Aviva Romm, MD

Category: Thyroid and Autoimmune

  • Why Women Have More Autoimmune Diseases Than Men

    Why Women Have More Autoimmune Diseases Than Men

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    Fatigue, achy muscles, painful joints, brain fog, strange skin rashes…Could it be the flu? It’s possible. In fact, that’s what women are sometimes told!  But if it’s not flu season, and symptoms have been going on for a while, the flu is highly unlikely, and in fact, these can be symptoms of an autoimmune condition. 

    Not to be scary, but in my medical practice I’ve seen countless women who have struggled for years with autoimmune condition related symptoms, only to be dismissed, disbelieved, disregarded, and discounted. So please make sure to listen all the way through to make sure this never happens to you – and make sure to share this episode with as many women as you can – and practitioners, too, because as you’re about to learn, unlike in the past, autoimmune conditions are not uncommon at all – and they can have major consequences on our health and well-being and should not be overlooked!

    Autoimmune Diseases 101

    You’ve no doubt heard the term autoimmune disease, or autoimmune condition. But what are they, really? 

    We all have immune systems. These are the defense mechanisms, in the form of cells like T-cells, lymphocytes, and cytokines meant to protect us from infection, injury, and even high levels of stress. They are also involved in numerous other functions; for example, in pregnancy, our immune system shifts to protect a growing embryo from being seen by the body as a foreign invader! And as we learned in COVID, our immune system is a powerful ally that we want functioning in top shape! 

    But unfortunately, sometimes things can go awry, and that is the case with autoimmunity disease. Autoimmune diseases occur when the body’s immune system mistakenly attacks its own cells and tissues. This can lead to pathological changes and dysfunction of the tissue that is the target of the immune attack. It’s like friendly fire. Which isn’t too friendly.

    Over 100 different autoimmune diseases have been identified. They can be systemic or can affect specific organs or body systems including the endocrine (hormonal), gastrointestinal, rheumatological, and nervous systems. The most common autoimmune diseases include lupus, multiple sclerosis, rheumatoid arthritis, type 1 diabetes, celiac disease, Hashimoto’s thyroiditis, and  if you have one autoimmune disease, you’re more likely to develop another. 

    Autoimmune disease on the rise in the US and the developed world. In the US, it’s estimated that more than 50 million people have an autoimmune disease, while 8 million more have auto-antibodies, and approximately 25 percent of people with autoimmune disease have multiple autoimmune conditions at once. 

    While some autoimmune diseases are more common in men, most are more common in women. In fact, women account for approximately 80 percent of people who suffer from these conditions. The gender gap varies depending on the particular autoimmune disease: The ratio of women to men affected is 3:1 in RA, 6:1 in lupus, 10:1 Hashimoto’s, and 9:1 in Sjorgen’s disease.

    This is not a small or marginal issue: While autoimmune disease isn’t usually fatal, many are associated with a reduced life-expectancy, and in women under 65, they are now the fifth-leading cause of death and are a significant cause of disability. Further, delays in diagnosis and treatment, which are common in women with autoimmune diseases, can increase disability and mortality rates. 

    Getting diagnosed with an autoimmune disease can be difficult. 

    According to a survey by the Autoimmune Association, individuals eventually diagnosed with a serious autoimmune disease saw an average of four different doctors over a four-year period before being correctly diagnosed. Many were misdiagnosed with a variety of conditions that have no specific blood test to confirm the diagnosis. Some were told that their symptoms were “in their heads” or that they were under too much stress. About 45 percent of them had been labeled as chronic complainers or were told that they were overly concerned with their health in the earliest stages of their illnesses. 

    Believing women is an important first step in addressing the gender gap in autoimmune disease, and understanding the mechanisms that underlie this sex difference is important because it may lead to better prevention and treatment options.

    Why Do Women Have a Higher Risk of Autoimmune Disease?

    We’ve actually known for over a century that women are more likely to suffer from autoimmune diseases, but science is still figuring out exactly why this is.  So what are the leading hypotheses on why women are so much more susceptible to autoimmune conditions than are men? 

    As with so many medical conditions – particularly those for which medical science still says “We just don’t know” – the answers lie not in some ‘smoking gun,’ but in the multifactorial origins that underlie so many modern chronic diseases. With autoimmunity, research points to a combination of genetic, hormonal, and environmental factors that interact to trigger the onset of autoimmune disease. 

    And although the data in support of these hypotheses is mixed, partly due to lack of research attention to those conditions that do primarily impact women, there are several leading theories, and they may all play some role. Let’s take a look at each of these. 

    Our Immune System

    We laugh about ‘man flu’ but it’s not just a joke that we seem to ‘cope’ better with illness. On a biological level, women generally do have stronger immune systems than men. This serves us well in so many ways, including better outcomes and survival from infections, injuries, and sepsis compared to men. Women have generally higher levels of antibodies than men and also develop higher antibody responses to vaccinations than men. They also have lower rates of most cancers than men, perhaps because their immune system keeps cancer cells in check better. 

    But our stronger immune responses may come at a cost, when in the context of a modern milieu of potentially triggering exposures and factors associated with the development of autoimmune disease. Our more robust immune response may partly be responsible for our greater tendency toward developing autoimmune disease. But why? 

    The X Chromosome

    Another theory around women and autoimmunity centers on the X chromosome. Most women have two X chromosomes, while most men have an X and a Y chromosome. Cis women’s second X chromosome is usually deactivated, but we now know that as many as 30 percent of the genes on the inactive X are known to ‘escape’ inactivation. 

    As it happens, there are many genes involved in the immune response on the X chromosome. So the theory is that women’s immune response differs from men because we have multiple copies of certain immune genes, essentially telling our  bodies to make twice the amount of certain immune-related proteins compared with levels in men.

    Some animal research supports this theory. Mice with two X chromosomes develop autoimmunity more frequently than do XY mice, even when all the mice are engineered to have the same organs and sex hormones. And human research substantiates this: Men with a genetic syndrome in which they have an extra X chromosome develop lupus at rates similar to women. Some research has even identified a particular X-linked gene that might increase the risk of lupus when it is not deactivated. Meanwhile, women who have three X chromosomes are more likely than other women to develop lupus and Sjogren’s syndrome.

    Female Sex Hormones

    When it comes to X chromosomes, we naturally turn our attention to an associated factor: sex hormones. Indeed, some of the earliest theories to explain the sex differences in immunity- and autoimmunity –  have focused exactly on this. 

    Sex hormones play an important role in the immune system, influencing the expression of a number of genes involved in immunity. The actions of estrogen both improve and worsene autoimmune conditions, while progesterone and androgens (ie testosterone) are anti-inflammatory and immunosuppressive which is generally beneficial in autoimmune disease. 

    The idea that sex hormones are a key factor in autoimmune disease also makes sense given that for many women, autoimmune diseases often develop (or flare) during major hormonal transitions like puberty, postpartum, and menopause, when levels of estrogen, progesterone, and testosterone change dramatically. Women also report symptom exacerbation premenstrually. The use of oral contraceptives and hormonal treatments in response to menopause may also be exacerbating factors for some women. Some hormonal shifts also lead to an abatement of symptoms – pregnancy is a prime example. 

    The Pregnancy Challenge

    Pregnancy is an especially interesting area when it comes to autoimmune disease.. It’s a time in which changes in the immune system may protect against or reduce the symptoms of autoimmune disease. For example, rheumatoid arthritis and multiple sclerosis tends to go into remission during pregnancy, although there can be flare-ups postpartum. Lupus, however, often gets worse during pregnancy. Prolactin, which is elevated postpartum and during breastfeeding,  is pro-inflammatory effects, and this tends to worsen autoimmune disease.

    In 2019, researchers put forward the Pregnancy Compensation Hypothesis, which proposes that there is an evolutionary reason for these sex differences in immune response that’s rooted in the fact that women can get pregnant. 

    Cis women’s immune systems have a unique challenge that cis men’s do not: During pregnancy, we must grow a genetically distinct human in our bodies without our immune systems attacking it as if it were a foreign invader. So, the theory goes, perhaps women’s immune systems evolved differently to respond to these complicated immune requirements during pregnancy: to tolerate the fetus and placenta, while compensating in order to still fight off pathogens. 

    It seems that in order to do this, women’s immune system ramps up and down at different stages of pregnancy: during the first trimester, inflammation increases as the placenta grows new blood vessels, then immunity drops during the second trimester, and then increases again in the third trimester as birth approaches. 

    According to the pregnancy compensation hypothesis, women’s immune systems evolved over millennia to perform well in the presence of the fetus and placenta. But in modern cultures today, we are not pregnant as frequently as were our ancestors. The fact that we thus don’t have as frequent exposure to a placenta “modulating” our immune response, leads to an overactive immune system that’s at increased risk of tipping into autoimmune disease. 

    There’s another theory though. This one suggests that women’s ability to get pregnant raises the risk of autoimmune disease: during pregnancy, there’s an exchange of cells between mother and fetus. After birth, most of these are cleared, but we know that some fetal cells can persist in the mother’s body for years after pregnancy. And maternal cells can also persist in her children into adulthood. This phenomenon is called microchimerism. The theory goes that over time, these foreign cells can provoke an immune system, raising the risk of autoimmune disease. 

    This could explain women’s higher risk of autoimmune disease than men: While all of us, men and women, face the risk of retaining our mother’s cells when we’re born, women also face the risk of retaining their offspring’s during any pregnancies of their own, giving women more chances to develop microchimerism than men. 

    Environmental Factors

    Sadly, each of us is exposed to a plethora industrial, agricultural, and other environmental chemicals daily. The estimated number of such chemicals exceeds 80,000, and that doesn’t take into account the fact that those chemicals then also interact with each other within our bodies. PFAS and numerous other ‘forever chemicals’ have a well-established role on our immune and endocrine systems, which, as you’ve now learned, are both involved in the development of autoimmune conditions. 

    We know that exposure to various environmental factors plays a role in triggering autoimmune diseases in a variety of ways – including direct damage to cells in our immune system, and creating conditions for chronic overwhelming inflammation that may predispose us to autoimmune responses. And for so many reasons – from the number of body products we use to the number of household and industrial cleaners we handle – women have much higher levels of exposure to most of these toxins, which may also explain women’s higher rates of autoimmune disease compared to men. 

    You might not have heard this before, but stress is defined as an environmental toxin- and one that is associated with higher risks of developing an autoimmune condition because of the impact of stress on our immune response. And the data is clear: from greater emotional load to higher risks and experiences of workplace and also sexual trauma and domestic violence, hormonal changes throughout our life cycles, to greater burden from the bearing and care of children to the care of elders, women experience more objective stress than men. We may also react more significantly to stress on a biological level to stress. All of these also explain our increased susceptibility to autoimmune diseases. 

    Here’s another interesting fact that you might think of as nutritional – but is also environmental: Vitamin D deficiency. Deficiency in this nutrient, which is actually a hormone, has been linked to many autoimmune conditions –  and men generally tend to get more sun exposure than women! Despite the correlation between vitamin D deficiency and autoimmunity, and the high rate of autoimmune disease amongst women, checking Vitamin D levels to make sure they are adequate, is not part of routine women’s health screening! 

    The Microbiome

    The microbiome never ceases to astonish with its far reaching impact into so many aspects of our health, and immunity is one of the areas in which microbiome health plays a major role – possibly even before we’re born! 

    New research into the role that the microbiome plays in immunity suggests that sex differences in autoimmunity risk may arise from a complex interaction between sex hormones and our gut bacteria. While this research is still in its infancy, some rodent studies have shown that changing the gut microbiome of female mice prone to autoimmune disease could lower their risk. 

    Given that women experience so many more digestive problems than men, particularly Irritable Bowel Syndrome, which is a result of ‘dysbiosis’ or disturbance in the gut microbiome, perhaps this is yet another important clue into the origins in autoimmunity. In my medical practice, attention to the gut microbiome, and leaky gut as well, play central roles in my approach to my patients with autoimmune conditions, sometime I talk about at length in my book The Adrenal Thyroid Revolution, and which I give significant attention to in my online program, The 28-Day Gut Reset. 

    Women, Autoimmune Diseases and Diagnostic Delays

    Given that autoimmune diseases are such a common diagnosis among women, why is it that the medical system has such trouble diagnosing them? 

    There are a few factors that are so important to be aware of:

    1) Doctors don’t get enough education on autoimmune disease. According to another survey by the Autoimmune Association…

    • Nearly two thirds of family physicians said they felt “uncomfortable” or “stressed” when diagnosing an autoimmune disease.
    • Almost three quarters said the education they’d received on them had been inadequate.
    • 60 percent reported they’d gotten only one or two lectures on the topic in medical school.

    2)  Autoimmune diseases tend to affect the whole body but our medical system is very fragmented. Since many autoimmune diseases are systemic and many people have more than one, your symptoms may affect lots of different organs and systems in the body. Because there is no medical specialty called “autoimmunology,” it might be hard to even figure out what type of doctor to see. A rheumatologist for your joint pain? A dermatologist for your rash? A neurologist for your headaches? And those specialists will tend to focus on the symptoms in their area of expertise and might not see the bigger picture of all your symptoms together. 

    3) They often cause subjective symptoms. Many autoimmune diseases cause symptoms like pain and fatigue that are common to many conditions and can’t be objectively measured. In addition, autoimmune symptoms may wax and wane, complicating the picture even more. 

    4) Sexism. Thanks to the long history of gender bias within medicine, it’s especially common for these kinds of subjective symptoms to be dismissed or minimized in women. In fact, despite the fact that most autoimmune diseases affect more women than men, there’s evidence that it often takes women with autoimmune disease longer to get diagnosed compared to their male counterparts. For example, one study of patients with rheumatoid arthritis found that women were referred to a rheumatologist in 10 weeks, compared to just 3 weeks for men. While another survey found that women were diagnosed with Crohn’s disease in 20 months, compared to 12 months for men.

    For more on medical gender bias, check out my podcasts How to Protect Yourself Against Medical Gender Bias and  Eight Medical Myths Keeping Women from Getting Proper Diagnosis and Treatment.

    Tips For Getting Diagnosed with an Autoimmune Disease

    Knowing how to get a proper workup and diagnosis is tantamount to getting the care you need. Here are some top tips: 

    • Know your family’s medical history. Autoimmune diseases tend to run in families, so if you have a relative with an autoimmune disease, you could be more susceptible to developing one yourself. Note that it’s a tendency towards autoimmunity in general that runs in families—not a particular autoimmune disease. So one family member may have lupus, another may have Sjögren’s disease, while another may have rheumatoid arthritis. So be sure to understand what diseases are autoimmune diseases and share that information with your doctor. 
    • Keep a list of symptoms. People with autoimmune diseases often suffer from many seemingly unrelated symptoms. Keep records and be sure you tell your doctor about all of your major symptoms.
    • Ask around in your community to find recommendations for a doctor who is a good diagnostician. As mentioned, unfortunately there isn’t a speciality for autoimmunology, so an internist or primary care doctor might be the best place to start. Or consider seeing a specialist in the specialty that deals with your most concerning symptom.
    • Get a thorough examination, including laboratory tests. An autoimmune is usually diagnosed through a careful analysis of laboratory test results combined with a patient examination and history. But because autoimmune disease is just beginning to be recognized as the epidemic it is, many doctors don’t think to test for autoimmune diseases initially. And keep in mind that diagnostic tests can be uncertain. For example, rheumatoid factor and anti-CCP are two blood tests used to diagnose rheumatoid arthritis. While the majority of people with RA test positive on one or both of these tests, about 20 percent continue to test negative.
    • If a doctor doesn’t take your symptoms seriously, brushes them off as “just stress,” or refers you to a psychologist, find another doctor. 

    And never ever be afraid to speak up for yourself! Your health may depend on it! For more tips on speaking up and communicating with your doctor—especially if they’re gaslighting you—check out my podcasts Medical Gaslighting: What You Can Do To Advocate for Yourself and How to Talk to Your Doctor and Get the Health Care You Need.

  • On Invisible Illness: Living at the Edge of Medical Knowledge with Meghan O’Rourke

    On Invisible Illness: Living at the Edge of Medical Knowledge with Meghan O’Rourke

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    “It’s just anxiety”, “It’s nothing”, “It’s probably just your hormones”… These are just a few of the remarks that many women with ‘invisible illnesses’ hear from their doctors, and even their friends and family.

    Living with an invisible illnesses like long-COVID, post-Lyme syndrome, ME/CFS, Hashimoto’s, and even high-functioning anxiety or depression, means having symptoms that may not be obvious to others, even though you’re suffering, and for which conventional medicine may have little to offer by way of diagnosis, let alone treatment.

    Join me for a rich and important conversation on the topic of invisible illness, redefining identity, and finding solutions where you can, with my guest, Meghan O’Rourke, author of the New York Times bestseller The Invisible Kingdom: Reimagining Chronic Illness, also a finalist for the 2022 National Book Award in Nonfiction!

    In this episode, we talk about the disproportionate effects of chronic and invisible illness on women, the risks of medical gaslighting, the much needed bridge between conventional and alternative medicine, and what it means to be living on the edge of medical knowledge.

    Meghan and I discuss:

    • Her experience and story of living with an invisible illness, searching for support, and the internalized gaslighting she experienced from not being seen by her medical providers
    • The importance of seeing and validating the experience of people living with a chronic and invisible illness and making the Invisible Kingdom visible
    • The medical gender gap and how gender plays a role in receiving a diagnosis and being believed
    • How long covid is potentially changing the conversation around invisible illness
    • Why it’s so important to deeply trust your body and learn to discern what is — and isn’t — working for you from medical interactions to conventional and alternative therapies
    • Non-negotiables for living well and navigating work + motherhood, with a chronic condition
    • The need for a third path in medicine that bridges conventional and alternative medicine
    • Meghan’s advice on how we can advocate for ourselves to get the labs and support we need from our medical providers and so much more

    If you or someone you live is living with a chronic, invisible illness, I hope this episode offers you support, comfort, and compassion – and removes invisibility so that anyone struggling alone feels seen and heard.

    To LISTEN, use the player above or go to where you listen to podcasts, and please SHARE this episode widely so we can all better understanding chronic, invisible illness and support those who are facing them.

    This conversation has been edited for clarity and length.

    Aviva: My guest today, Megan O’Rourke, is the author of the New York Times bestseller, the Invisible Kingdom: Re-Imagining Chronic Illness, which was a finalist for the 2022 National Book Award in non-fiction. She is also the author of the memoir, The Long Goodbye, a book about grieving the loss of her mother as well as the poetry collection’s sun in days once and half life. Her writing has appeared in the Atlantic Monthly, the New Yorker and the New York Times and more. She resides in New Haven where she teaches at Yale University.

    In her twenties, Megan began suffering from mysterious symptoms ranging from crushing fatigue to rashes to strange neurologic symptoms. The search for a diagnosis which consumed a decade of her personal and work life led her from doctor’s office to doctor’s office where she was routinely dismissed by physicians who had no answers or if any it was to psychologize her and eventually to the world of alternatives and integrative therapies where she did find some lifestyle answers and understanding amongst others who similarly both struggled with a wide range of strange symptoms and who too often had also been marginalized by conventional medicine left to figure it out on their own.

    But this world had its own limitations, questionable practices, unrealistic promises, and its own shadow side of psychologizing and blaming the patient. Her experiences led her to not only be profoundly disturbed by the American medical system, but to have to redefine her beliefs about illness, healing and identity as she faced living with chronic disease, the loneliness of living with invisible illness. Those symptoms which may not be obvious to others, though you’re suffering and for which conventional medicine often has little to offer at least yet by way of diagnosis, let alone treatment, which she describes poetically the invisible kingdom. Her book written through the eyes of one, struggling with invisible illness and with the rigor of a research journalist is one of radical compassion and empathy and is a healing bomb for anyone struggling with chronic disease or who loves someone with chronic disease, which given the startling statistics about the number of people suffering with Long COVID only makes this book all the more important and relevant right now.

    Megan, thank you for being with me today and taking the time to share your story.

    Meghan: Oh, thank you for having me and thank you for that just incredibly beautiful introduction. It’s everything I hoped the book would be and everything I feared it might not be, so it’s really moving to hear your words.

    Aviva: It’s a joy. You wrote in the introduction to the book that you got sick the way Hemingway says “you go broke” – gradually and then suddenly. You describe yourself at one point as almost entirely unrecognizable to yourself. For listeners who haven’t read your book yet, can you describe your symptoms, their progression, and also how you experienced and ultimately coped with this new reality and this self-unrecognizability?

    Meghan: I will try to give the short version to that question because of course the book is a long version, but the short version is that I became invisibly ill or mysteriously ill in my early twenties right after graduating from college. I was 21 and I had had strange health symptoms my whole life. One question I often ask myself in retrospect is when did this begin? But certainly when I was 21 starting my first job with all the excitement of a young person setting out in the world, one day I was walking to work and I was beset by this sense of electrical shocks flickering all over my body, extremely severe, extremely painful, so much so that I had to rub my arms and legs or else they would just start spasming actually and twitching. And that heralded the beginning of a rollercoaster of ups and downs in my health and of symptoms that ranged widely, and included subjective ones that are hard to measure, such as fatigue or brain fog, pain – but also some pretty concrete ones like hives that I experienced every day, wrenching night sweats, I’d have to change my clothes in the middle of the night.

    What happened was that I started seeing doctors and no one could find anything exactly wrong. In retrospect, one of them said, actually you did have a positive ANA, which can be a marker for autoimmune disease. And she was like, maybe in retrospect we should have realized. But I think there was this sort of instinct or rush or unconscious pull to see my problems as being manifestations of anxiety or hypochondria or just a sort of neurotic young woman. And I internalized that for really a decade and it took about 10 years for me to start actively seeking more help. I haven’t said this often, but I mentioned it in the book, there was this clarifying moment where my mother who had stage four cancer and was on her seventh session of chemo. I was staying with her in Connecticut and one morning she woke up and was like, let’s go take a walk. And she had more energy than I did. I was 31 and I was not doing chemo and I did not have cancer. I was like, something is wrong, right?

    Aviva: You knew something was wrong and yet externally you probably looked fine to all the world.

    Meghan: Exactly.

    Aviva: I think a lot about this term, invisible illness. It has a lot of nuances to it and I have a lot of patients who come to me because of that going from doctor to doctor, and we know the more often you go to the next doctor, the more next doctor is likely to consider you neurotic, and the more next doctor and the next doctor and the next doctor start to add on these psychological diagnoses, this is well-documented in medicine. So you’ve got this situation where your symptoms aren’t seen by others and your symptoms aren’t seen by doctors. Many women who talk to me in this situation, and it sounds like you went through some of this, kind of become invisible in their own lives because they just don’t have the energy to show up and be out there in the world anymore. So there are all these nuances that I think about when I think about invisible illness. And clearly you have given some thought to this word because it’s the title of your book, the Invisible Kingdom. Can you talk about this experience of this invisibility and how you chose this title?

    Meghan: Yeah, I love everything you said. The invisibility really is so complicated, isn’t it? There’s the invisibility of your symptoms or the so-called invisibility of your symptoms, which is to say that again, often women with autoimmune diseases have post-treatment Lyme disease syndrome, Long COVID. If you’re experiencing problems with your autonomic nervous system, they’re not evident to others. But your life can be so challenging because you’re having trouble temperature regulating and generating enough blood to your brain when you stand up. We know that there’s fatigue and brain fog.

    So the symptoms were invisible, and then when I went to doctors, whatever was wrong wasn’t showing up on tests. And what became extremely clear writing this book, and as you well know, modern medicine is built on measurement. If medicine can’t measure it, your condition is rendered invisibile simply because it doesn’t fit into the known tools we have for measuring. If you think about it logically, just because something doesn’t show up on tests doesn’t mean that nothing is there. It may mean you don’t have the right tests.

    Aviva: We’re not using the right measurements. I always say to my patients, they’ll go to their doctor and they have every symptom of a thyroid problem. And I’m also really careful not to over-diagnose thyroid problems because this happens in the integrative-functional world all the time. But I’ll say to my patient, so the cutoff of the lab is 4.8, you have all the symptoms and your lab results show 4.6. It’s a little bit like water isn’t boiling technically until it’s 212, but at 210 something’s going on, right?

    Meghan: At one point I read about the statistics of the range and the range is designed that if you actually know the statistics scientifically, that statistically people will fall outside the range. And yet no doctor ever talked to me that way. No doctor ever said, well statistically there are people who fall outside the range and you have all the symptoms and you’re close to the range, so therefore that should be a clinical diagnosis. But the more profound invisibility you’re talking about is that one of not showing up. And that definitely happened to me where I was sick for so long that I started to internalize the idea that I was just this sort of anxious, overwhelmed person who maybe just was bad at living. Either I over-committed or just everyone else sort of soldiered on and I didn’t. I didn’t know if everyone felt this way.

    So the invisibility gets very complicated because it renders you invisible to yourself in some way. I mean, one of the reasons recognition is so important is that we’re social creatures and the judgments of others deeply shape not only our experience of disease, but our experience of our selfhood. And one of the deepest concerns I have is that when we don’t recognize these invisible illnesses and we don’t make room for them and we don’t take them seriously, we render invisible whole people, whole parts of selves, whole possibilities for future treatment. So the invisible kingdom, it was the last part of the book to write. I had a different title that I’d never loved and I was thinking about it and it wasn’t satisfying. Then I was talking to my husband, he was like, there’s something kingdom. And I was like, oh my God, it’s the invisible kingdom.

    Because the book was written out of my sense that I was incredibly lonely in this experience. I’m sure many of your listeners have felt lonely, but I remember clearly this moment where I had been patronized and met with kind of coldness by a new doctor. And I exited just like brokenhearted, weeping, leaning on someone’s dusty car in the street and suddenly thinking, if this is happening to me, this is happening to millions of other people. And that was the genesis of the book – it was just that moment. Indeed, starting to research, I interviewed about a hundred people. And then the research shows us, yes, then there is an invisible kingdom out there. And hopefully together we can be visible and change the way these conditions are thought about and talked about and treated.

    Aviva: So not to be cheeky, but every time I look at the invisible kingdom, my brain replaces it with the invisible queendom.

    Meghan: I love it. That’s an even better title.

    Aviva: Only because it’s not just that I mostly take care of women and children, it’s that statistically these types of symptoms – the fatigue, the brain fog, the pain, for thyroid the weight gain, for many autoimmune conditions the depression, these are symptoms that historically have been chalked up to names like hysteria and neurosis and have had all kinds of cures over hundreds of years and are primarily symptoms that show up in women, which historically we know from medical gaslighting and medical misogyny are more likely to be dismissed.

    You use this term. It is the summary of what I say to my patients all the time when they come to me looking for answers. And I’ll say, I’m going to do everything that I can to help you find an answer. And I believe you – I believe that all these symptoms are really happening for you. But what I know about reliable medical science and even some of the fringe testing that’s available is we still might not find an answer. And you say “living at the edge of medical knowledge.” So I want to swing back to that.

    Before we get there, do you feel like it wasn’t just the edge of medical knowledge that prevented you from getting a diagnosis? Do you feel like there was anything about the fact that you are female and that there was this, you used the word patronizing, how do you feel gender played into all of this and into how your symptoms were perceived?

    Meghan: It’s impossible for me to disentangle this from my gender. It just is, and in a number of ways, one of the ways being the ways in which I gaslit myself. I just wish I could go back in time and say, listen to yourself. I get asked all the time, what should I do? What should I tell someone? Listen to yourself.

    I had been acculturated and raised in a patriarchal culture that taught me not to listen to my own needs. I wish for everyone that we could listen to our own needs. That was number one. And your own instincts. There’s that kind of broader acculturation, which I was a young woman with vaguely disordered eating who would be like, well, I just ate some pizza and it’s all my fault. That’s why I feel sick today. Cause I did feel sick anytime I ate pizza.

    I had all these associations, but then when I went to doctor’s offices, I was entering offices in which the legacy of hysteria was as present as the stainless steel exam table or whatever it was. That legacy doesn’t mean that we’re all reading Freud and thinking about Freud or reading SW Mitchell and saying, oh, these things are the disease of nervous exhaustion. But it does mean that we have more than a hundred years of history in which medicine has been taught to think of women’s testimony about their own vague, so-called vague and subjective symptoms, as particularly unreliable, as often evidence of a hidden trauma or hidden truth that they’re unwilling to admit. And there’s even a moment in Freud where he sort of says something like, the more they insist – I’m paraphrasing broadly – but it’s like the more they insist, the more you know it’s not true.

    There’s this kind of gap in terms of being willing to listen to women and then we just simply do not know enough about women’s bodies. And we should say too, transgender bodies and what happens to bodies after medical transition because we don’t know enough about that either.

    You have this combination of distrust of women as reliable testifiers on their own behalf, plus a just basic lack of knowledge about how we metabolize things. Why is autoimmune disease on the rise and why is it mostly women? There are reasons, but why. We have hints but we don’t have conclusive evidence exactly. So absolutely gender is a huge driver of the silencing and the making invisible. And as you say it is, it’s not wrong to say that there is kind of an epidemic of medical gaslighting when it comes to these kinds of illnesses.

    Aviva: Absolutely. Even in medical school, so what, 17, 18 years ago – so I was a home birth midwife and doing out of the box things before for 20 years – we would have the patient who came into the emergency department with vague symptoms and I would actually watch an attending roll their eyes. Or you would hear the little acronyms like, oh, she’s a PIA (a pain in the ass) Or it would be “that kind of patient” with air quotes.

    Statistically conditions like what we’ve called encephalomyelitis, what we’ve called chronic fatigue syndrome, fibromyalgia. Even though these are now well established medical conditions with etiologies and diagnostics, even if some of those are clinical or symptom-based, some studies show that 70% of physicians in some hospitals, medical centers don’t believe that these are real.

    Meghan: Yeah. And I know that tickborne illness and Lyme disease is a really contested subject. The CDC itself now acknowledges that in, I think up to 20% of patients, there’s ongoing symptoms after an infection for reasons it doesn’t talk about or it’s not sure that that’s because of persistent infection. But they themselves are saying this is real. And I talked to doctors when I was reporting on Lyme disease who were like, that’s just bullshit. This isn’t real.

    Aviva: And not only that, the CDC, I think it was last year or the year before, 2021 or 2022, said that they had underestimated the number of people with tickborne disease by at least tenfold. So where they thought it was 30,000, it’s probably more like 300,000.

    Meghan: I think they’re headed in the right direction there. One of the questions I take up in the book is, well why is that resistance there? Why in a medical system – and medicine is about helping people – why when people go in need, are they met with – especially women – “well, nothing’s wrong with you.” And I always like to offer an analogy which shows us, cause we’ve all gotten used to it, but just think about how strange it is. Imagine going to a restaurant, a really nice restaurant, sitting down at the table and your waiter, you know, have your napkin. You start to drink your water and the waiter comes over and says, what would you like? And you say, well, I’m in the mood for a steak today. And 10 minutes later the waiter has consulted with the chef and comes back and says, the chef doesn’t think you’re hungry.

    It’s just so weird. Medicine is there to help us. Why is medicine so skeptical of us? We’re the people it’s supposed to help? Sure, hypochondria exists, but actually the idea that there’s limits to medical knowledge and that some of us live at the edge of it – when we actually know that autoimmune disease affects X number of people and that there’s a sort of slow and oncoming of it and we don’t have great tests. I just don’t understand why the rational doctor doesn’t sit and think, oh, maybe this person has an autoimmune disease and I just can’t see it yet.

    Aviva: Yes. Studies show this, that as physicians were trained to know and have answers and when we don’t, it creates this huge resistance and anxiety and it’s easier to just psychologize the other person and give an answer than sort of admit lack of knowing and just say, I’m in this with you, I don’t know yet, but we’re going to figure this out. Or at least I’m on the journey with you even if we can’t figure it out yet. And I’m here. Believe me, I’m not justifying, I’m just explaining – the incredible level of burnout that physicians are under has really affected physicians’ personalities and the level of hostility, rage, and like in so many systems and cultures that tends to get taken out on the person perceived as most vulnerable – often women – in any culture women are the most likely to receive the abuse, lack of knowledge about testing and broader interpretations of testing. So doing a broader thyroid panel, always getting an ANA with a reflex. There are just things that can be done – getting an Epstein Barr virus panel. And then I think because some of these things have been done outside of medicine with citizen scientists, that’s how I like to say it. People who are trying to find the answers to themselves. Sometimes things swinging so far in a non evidence-based direction that physicians develop this almost reflexive, reactive, knee-jerk skepticism. I’ve had patients who have come to my practice who’ve had their doctor say, when they ask about a thyroid test or they ask about something for an autoimmune condition or an herb or a supplement, “oh, where’d you get your degree, Dr. Google?”

    And then as women, we feel unwell. So we’re already exhausted. We have these bad experiences. We’re taught not to make waves and speak up. And our mothers are sometimes still of the age saying, ‘honey, listen to the doctor.’ It’s complicated. So I love this I expression: living at the edge of medical knowledge. I think that for me as a physician, it’s a beautiful term to be able to share. So thank you for that gift because I will really be using that more and more with my patients. It’s how I explain it, but now I have that sentence.

    Meghan: This describes it. Because I’ve spent years trying to be like, what’s going on? And then I was finally like, no, I’m just at the edge of knowledge. It doesn’t mean I’m making anything up.

    Aviva: And for physicians they should look at that as an opportunity for curiosity.

    So with your symptoms, you’re coping to be a functioning human being. I’m imagining as for so many people with these unusual symptoms, you had some waxing and waning, sometimes you felt okay, sometimes you didn’t. Better days, worse days. How did you write a book and have a deadline with all of that going on?

    Meghan: I couldn’t write the book until I was much better, a word I like to put in air quotes. So you can see, and I’m saying that so our listeners can hear, because I’m not better in the sense that I thought I would be when I first got sick. I’m not a totally well person. I’m a person with chronic illness. But I always like to let people know, I really could not have written this book when I was at my sickest. And in fact, it grew out of a piece I wrote for The New Yorker in 2013 during a kind of period of remission where I wrote at my sickest. I would’ve been able to write these sentences, but I would not have been able to make paragraphs of them.

    Which is to say that I could have thoughts, I could put things down, but the brain fog and fatigue were so severe I couldn’t do the synthesizing deep intellectual work that this book required. And I say that because I think it illustrates too how profound the impact of these diseases are like. Because they relapse and remit, because you look okay, people often think it can’t be that bad. I think they think it’s just being a little tired now and I want to say no, I couldn’t do the things that I loved and that gave me meaning and that also brought in income. I just couldn’t do them. That’s how sick I was. It wasn’t tiredness, it was cellular fatigue.

    Aviva: Can you read that passage that we talked about earlier before we hopped on the interview – on page 48 – where you talk about this debilitating fatigue?

    Meghan: Definitely. So I think one of the things that’s hardest for all of us is that this word fatigue gets used. It’s a kind of a lay word and it’s a word we use to mean sleepy or tired from just a long day. And as anyone listening to this knows who experiences it, it’s something altogether different. I was actually explaining it to my four-year old this morning as like if there’s little furnaces in your body making energy, all of them suddenly went out. So walking down the street, you just didn’t have that furnace to keep you going.

    Aviva: I ask my patients, when you talk about fatigue, are you saying you have that feeling in your head and you want to put your head down? Is it the feeling like, I didn’t get a good night’s sleep, but a cup of coffee’s going to make a difference? Or is it just bone-weary? Just that bone-weary and you’re talking about that.

    Meghan: And fuzziness in the head that sometimes it felt like coffee would help, but then the coffee never helped.

    Aviva: Yeah. Not the best solution necessarily.

    Meghan:

    Oh, okay. So I’m going to read from a passage where I’m talking about the ways in which when you’re chronically ill and you’re searching for answers and you don’t have recognition, part of what you’re doing is impersonating the self you think others want you to be, the self the world wants you to be, the self you might want to be, right? So I write…

    There is a loneliness to illness, a child’s desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if no one has any grasp of what it is you suffer from and the symptoms wax and wane? How do you describe a disease that’s not always there? The hardest thing to convey to doctors or friends with the debilitating fatigue, which many other patients I knew experienced as well. Complaining of fatigue sounds like moral weakness. In New York City, tired is normal, but the fatigue of physical dysfunction I came to recognize is as different from normal sleep deprivation as COVID-19 is from the common cold.

    It was not caused by needing sleep I thought, but by my body’s cellular conviction that it needed to conserve energy in order to fix whatever was wrong. The feeling erased my will, the sense of identity that drives most of us. The worst part of my fatigue was the loss of an intact sense of self. It wasn’t just that I suffered brain fog. It wasn’t just the loss of self that sociologists talk about in connection with chronic illness in which everything you know about yourself disappears and you have to build a different life. Rather as I got sicker that winter, I no longer had the sense that I was a distinct person. On most days, I felt like a mechanism that moved arduously through the world simply trying to complete its tasks. Sitting upright at my father’s birthday, dinner at a quiet restaurant required a huge act of will.

    Normally absorption in a task, an immersive flow, can lead you to forget that you feel pain. But my fatigue made such a state impossible. I might at the nadir of my illness have been able to write any one of these sentences, but I would not have been able to make paragraphs of them. To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick the act of living is more act than living. Healthy people have the luxury of forgetting that their existence depends on a cascade of precise cellular interactions. Not you. “Farewell me, cherished me, now so hazy, so indistinct.” [Alphonse Daudet, a 19th century French novelist.] That was a line I now often thought of. My mental sensation of no longer being a person had a correlating physical symptom. My eyes no longer seemed like lenses onto the world.

    They seemed rather to be distinct parts of my body as perceptible as fingers, oddly distant, protuberant, like old-fashioned spectacles. My face was a mask I was conscious of at all times. It made me feel categorically fraudulent. I could feel the fat in my cheeks and the weight of my bones as I spoke. I experienced a mounting anxiety. Everything was wrong and that wrongness was inside me, but I wasn’t sure anymore who that me was or how to express what was happening. As Virginia Wolf testified in On Being Ill, “English, which can express the thoughts of Hamlet and the tragedy of Lear has no words for the shiver and the headache. The nearest schoolgirl when she falls in love has Shakespeare or Keats to speak her mind for her. But let a sufferer try to describe a pain in his head to adopt her and language at once runs dry.”

    Aviva: People experience loss, unexpected adverse events in their lives that shift their lives, and also beautiful things that shift their lives, change their identity. I don’t know why, but winning the lottery comes to mind, right? Things happen, both sides of the coin, but there’s a start and stop to them and then there’s a healing. With chronic illness have you redefined yourself as someone with chronic illness? Have you resisted defining yourself that way? How do you integrate that? This is something you have better days, worse days? Tell me what your recreation of your identity has been.

    Meghan: Oh, it’s such a good question. I do both. I have integrated, am integrating, working on integrating my identity as a chronic illness person and have resisted it. I think that the book, the Invisible Kingdom, it was a challenge to write because chronic illness resists tidy narratives. We like to tell stories in this country of radical overcoming of illness. Just do it. Whatever doesn’t kill you makes you stronger. We like there to be a big outcome. And I was telling a story of this kind of messy, I got sick, I got better a little bit. I got sick again, I got a little better. I got sick again. I got COVID. I got sick in this way. One problem we all have is that the world doesn’t know how to listen to that story. Not that we feel we don’t know how to tell the story, but actually the world doesn’t know how to listen to that story.

    Aviva: Well there’s kind of a perception too, right? If you complain to your friend once about something, fine, but you shouldn’t keep coming back with the same story. Right?

    Meghan: Exactly. So I was really interested in how do I make a story out of this? What’s the story? And I’m getting to your question in a sense that what I realized was that the story was the story of my own trajectory from getting sick, getting online, Dr. Google, reading everything, joining patient groups which were instrumental to my getting a diagnosis and thinking, I’m going to get better. Just do it. I’m going to do everything. I’m going to do all the things and I’m going to be okay again. I’m going to be myself again.

    Okay, life had other plans. That’s not what happened. But what happened was that I learned to become a different person who lived with my illness. But I could only learn to do that once the world recognized the reality of my illness. Because before that, I spent all my energy trying to get the world to recognize the reality of my illness, all my energy trying to persuade my doctors this is real or my colleagues or my friends.

    And so that’s something that’s I think really important when we think about chronic illness, identity and experience, is that the reason we need this invisible kingdom to become visible is that we need to have the dignity as patients of being able to focus on our own adjustment to our new reality without having to say in the first place, this is a reality. For me that meant I am a really driven person. Like so many of us, I like to do things really well. I like consistency, I like control. I’ve had to accept a near total loss of control. I’ve had to accept pretty intense physical limitations.

    But once I’ve done that with adequate medical care, taking antibiotics for my tick-borne disease, getting the right diagnoses, getting the right PT, I now live this really full life. I have kids I didn’t know I’d be able to have kids. I wrote my book, I travel, I can take long walks, in the right conditions – not too cold, not too warm. Which is a long way of saying I have to work every day to use my life hacks, as I put it, and not overextend myself. And then sometimes out of nowhere, a really bad flare comes. This happened a couple months ago and I then have to resist the urge to blame myself. Maybe some of you are more enlightened, but when this recent flare happened, I kept like, well, I did that wrong. And I stayed out too late at this one. I had a work dinner and I stayed out too late and then I didn’t do this and didn’t take my whatever…. I just was full of self-recrimination and I had to really stop and be like, you know, you got unlucky. There are sociopolitical reasons you have an autoimmune disease and you have neglected tick-borne illness.

    Aviva: I think that’s my biggest message when people ask me about my book Hormone Intelligence. I keep coming back to, yes, it’s all about the hormones, but my biggest takeaways, you are not broken, and it’s not your fault. There are really complex total ecosystem reasons.

    Meghan: Right. And we’re like the canaries in the coal mine.

    Aviva: Exactly. So you mentioned a few things that I’m really curious about and want to explore a little further. You said that online groups were instrumental in your getting a diagnosis. And then you do mention that you were diagnosed ultimately with tick-borne disease. It’s not always easy to get doctors to run those tests. I kind of want to encapsulate this into a bigger global question and storyline that we move into.

    So many people who don’t get answers in conventional medicine have to go far outside the box. And also I think it’s really unfortunate. People who are already sick and exhausted now have to figure it out for themselves. That’s a lot of work and a lot of trial and error. It can be a lot of expense, it can be a lot of sometimes people recommending not so safe things. So at what point did you say, okay, I’ve got to go down this kind of, I’m going to call it alternative medicine road. There are lots of names – integrative, functional medicine, all the things, wellness. And also did you have to override your rigorous journalistic mind to go down that road?

    Meghan: Yeah, definitely. Since I had basically been sick since my twenties – but in this self-gaslighting where I was like, it’s just on my job to be a better human. I then had a big downturn when I was about 32. Interestingly, right after my mother died, which is something I think about a lot, I caught a virus the day she died or it manifested the day she died. And I just never got better. And I was going to doctor after doctor. Interestingly, my insurance had changed. That wasn’t really talked about. So my longtime GP, who had been pretty great actually, I couldn’t see her anymore. And I saw this man and he was like, I think you’re just tired because you get your period. And I was like, well, no. I’ve always had my period. I’ve never felt like I’m dying before. So I was like, I got to do something.

    I just started a journalist asking around, asking friends in New York, what should I do? One friend recommended this amazing conventional doctor at Weil Cornell who saw me, and she was the one who was like, I highly suspect you have an autoimmune disease. She gave me the diagnosis of autoimmune thyroiditis and she is incredible and open-minded. And she said, some patients find they do better when they’re not on wheat or gluten. The evidence isn’t clear yet, but I’m giving that to you. And that led me to Google and patient groups. And pretty much with that diagnosis I started reading. What I really quickly learned is that even though she’d framed it as an autoimmune problem, we were still talking about it mostly as a thyroid problem. And my reading was leading me to think, oh wow, actually this might be a systemic problem and it might explain other things that are going on, like my bad digestion, my headaches, my joint pain. Maybe autoimmune disease is a kind of unifying, and microbiome disorders is a kind of unifying theory here.

    That led me to alternative medicine. I think one thing I like to always say is, look, in my view, both conventional medicine and alternative medicine/integrative medicine have their downsides. And even conventional medicine has its kind of quacks – the people who just have to make the money. People who will just do a C-section because it’s easier and not because it’s better for your body. Let’s not forget that we intervene when we don’t need to. And that is a problem, a non evidence-based approach that conventional medicine definitely takes. But what conventional medicine does have is the idea of evidence-based medicine. And where I think it’s risky with alternative medicine is that we’re not working in that same territory because most people are trying to help people at the edges of medical knowledge. The great tragedy here is that all of the work is put on the patient in terms of discerning what is trustworthy and what is not.

     So I’ve thought a lot about this. We could talk about it for an hour, but basically what I came to is we need a system in which conventional medicine and alternative medicine are talking to each other more. And there’s some kind of national board, and there is a way in which we rate, we need a rating system for what interventions are the least risky to the most risky, so that patients can be informed and say acupuncture, not very risky, possibly beneficial – in my case it was – versus… I did some pretty risky treatments. I think if we stopped arguing about the relative and had more of a holistic conversation on a national level about there are things we don’t understand about the body’s response to care and empathy and being treated as a whole that are really, really important and have to do with individualized care that can’t easily be replicated in those randomized controlled studies, we could start to get somewhere more productive.

    Aviva: I’m a hundred percent with you. I feel like I call it the third path.

    Meghan:

    Yeah, the third path.

    Aviva:

    It’s like we know that there are things that we need from conventional medicine, not just for acute urgent things, but for chronic things. We know that the wellness model of care and looking at all of our ecosystem and our food and our stress level, all those things are important. There is a lot that could be done with the evidence that we do have in conventional medicine. Simple thyroid testing, simple EBV testing, Lyme testing, that isn’t being used. And I think the tricky part with some of the not conventional therapies is that we don’t know what is safe and isn’t safe all the time because the research isn’t there. So it’s so marginalized, but I couldn’t agree with you more. This conversation of what we can learn from each other is so important.

    Meghan:

    It’s really important for chronic illness care. And I think it’s actually another way in which we’re neglecting chronic illness care. Because in the book I talk about this, and I’m sure you know this, but I was fascinated as I did research to find out how many studies over and over in different kinds of chronic illnesses showed that having an empathetic doctor did as much to help the body’s function for the patient as the most powerful medicines we have. So like in IBS an empathetic doctor was as effective as the best medication we have. So there’s something, not to get too mystical about it all, but there’s something about our bodies that the biology is social. Our biology responds to… we know it responds to trauma and stress, so why wouldn’t it respond also potentially to warmth and joy and empathy. So anyway, I’m really fascinated by this area of research and hope that a lot more gets done and that we sort of shift to thinking about chronic illness care as including alternative medicine or practitioners who can help with the lifestyle changes that we know can really help.

    Aviva: You mentioned a few things that I’d love to circle back to also. So in your opinion what is the balance, if you will, between, okay, yes, we know that certain foods for certain people, may be triggers versus, oh shit, I ate that and this is why I have this flare. I teach in the intimate partner violence class at Yale – it’s for the medical school – and the data on the trauma of intimate partner violence leading to autoimmune disease, chronic migraines, joint pain, sleep problems, actual measurable physical diseases is significant. So we also know that trauma, stress, all these things can contribute or cause. And yet there is that tendency to psychologize. So what’s the middle place where we can hold both things as true without blaming the patient, without becoming nuts about everything you put in your mouth so that life doesn’t become unpleasant or everything you do or think, how do you walk that balance?

    Meghan: As I talk about in the book, there was definitely this period where I was in that state of everything I’m exposed to or eat is potentially harming me. And I was really focused on it, which is one reason it took me a while to realize that I also had a tick-borne illness, by the way. So I think what that taught me and what I think about daily is that when we live with these complex chronic illnesses, we have to stay alert to the depth of the complexity. And that when we pin too much on any one thing, we usually are going to end up telling ourselves a kind of reductive story about cause and effect. And that’s been really liberating and helpful for me because I’ve had to truly lean into uncertainty.

    I talk in the book about this great quote from the poet, John Keats, the 19th century poet, where he had watched his family members die of tuberculosis. His brother would soon die, he would soon die. And he’s writing to his brother and he says… he’s trying to think about what makes a great artist and what makes a merely good artist. And he says, I think it’s his quality of what he calls negative capability, which is not irritably reaching after fact and reason. And I thought, oh wow. Of course. It takes a poet who’s sick to articulate this. Because what he’s saying is that to actually be present for the dimensionality of human life and to be able to write or reflect it, you have to allow radical uncertainty into your life. And you have to let go of control.

    So how do we balance that with, if I do control things, I feel a little better? I think that’s a dynamic. It’s not an answer. Control can’t be the answer. It’s too static. So it has to be this searching for a dynamic in every day between control and going with the flow, between rest and the things that bring you joy. That’s how I think about it every day, I’m going to spend energy, I’m going to need to conserve energy. I’m going to need to control, I’m going to need to go with the flow. And that changes for me daily, depending on if I’m in a flare or if I’m doing well.

    Aviva: How did you reach a point for yourself of truly, deeply trusting your own body-knowing? Because even in wellness, it can be like this diet, these supplements, and you can feel like you have to do all of it, but if you actually stop… it doesn’t always make a difference for that person as an individual. So how did you also discern which things were and weren’t working for you, both conventionally and from outside the box?

    Meghan: That’s a great question. I think the frustrating answer is it takes a lot of time and it’s just the pace of knowing, acquiring knowledge is slow. And so it really took me years. And trust me, there were months where I was like, I need the answer now. And it changes. So I think I was lucky and that there were a couple really clear things. It was very clear that gluten made me very sick, and it just became not worth it. And so I think once you find one of those big pieces, it starts to help you identify the smaller pieces. It took me years though to realize that eggs also made me sick. For example, I kept thinking I was having a Lyme flare, but it was just that I had started eating eggs again. So I think it’s patience and keeping a really good journal and diary and just knowing it’s not going to be perfect. And if you can figure out some stuff also. I don’t know if people will resonate, but I found over time as I did that, that I started having a kind of intuition. It’s going to sound really weird. it’s true.

    I would have an intuition that certain supplements were good for me. Cause I would almost start craving those. I would be taking 20 supplements and I’d be like, Ooh, I really want to take that curcumin today. Or I really want to take the glutathione. And glutathione and curcumin are what I still take. And those I think for me are really, really helpful. Doesn’t mean I’m taking all the other things I should take, but I kind of just have this feeling that these help me.

    Aviva: For those listening who aren’t familiar with them, they’re anti-inflammatory. Do you have any non-negotiables for living that you’re just like, these are things that I won’t not do or won’t do?

    Meghan: I don’t eat gluten ever. Just not worth it. I used to be an avid runner. I just can’t anymore. I will treat myself occasionally to a “run.” It’s like I’ll run three blocks and be like, Woohoo, I did it. I really prioritize sleep. And I am really careful about if a friend is sick I don’t see them because viruses knock me sideways for a month or two, even mild ones now. My kids are constantly sick. So I’ve had to just be flexible. They’re going to get sick. They’re kids. I just have to plan less. And I don’t handle the cold well. So it was really hard in the pandemic. Speaking of these choices we all make, my kids could have play dates only outside. And I would really have to choose between my kids having a play date and my health. And I would know and I just sometimes would do it. I’d sometimes take ’em and I would just plan that, okay, I’m going to be in bed afterwards cause I’m going to have this whole crash from it, which I do. It’s like my body just, all the energy drains out and it’s like my batteries went out.

    Aviva: I have a lot of mamas who I work with who have autoimmune diseases and they are a little more common at hormonal shifts in our life. So postpartum or menopause. And I think one of the most sad things that I see happening with autoimmune diseases or chronic illness in new mamas or mamas in general, at any point in being a mama, is just this incredible guilt that they don’t have the energy to run around and play all the time or can’t always go to the event. How do you cope with that piece of motherhood and how does your partner weigh in on all of this too?

    Meghan: It’s hard for him. It’s really hard. I feel a lot of guilt. I’ve had to just accept that. I’ve come to accept that some days I like six o’clock, I’m just done. Or sometimes three o’clock or four. I feel lucky that a lot of days I do have the energy. But no, my kids will definitely be like, you’re not playing with us enough. You’re not playing with us enough.

    Aviva: Every kid says that too. So you can just release that guilt from yourself right now. So many mamas are just done at four o’clock or six o’clock.

    Meghan: Maybe this is the wrong strategy, so don’t quote me on it if it’s not right for you. But I’m pretty explicit with my kids. I say to them, I have this, this is why it means this. It doesn’t mean it every day, but today I don’t have energy. And I make a joke a little, I’m like, you have all the baby energy and you need this, but I would need 1,200 coffees to play with you. And that would make me sick. I try to make it not threatening to them, but I’m pretty explicit. Like I have this stuff and it means this and daddy’s going to play with you now. It’s hard on my partner. I mean, it’s hard on him. I don’t know that he’s a hundred percent, he doesn’t have the lived experience.

    I get asked all the time about partners. How do we make it clear to them? Well, you know what? I think they just can’t understand if they don’t have the experience. But I think we can ask really explicit things. And so I’m like, I need you to do bedtime and bath and do the bed. And I’ll say goodnight. And then he can even grumble about it. I don’t care. It took me years to get to the place where I was like, oh, he might not be the person I go to for exact understanding. It might be one of you who are listening who’s gone through it. You might be the person who understands. And what I need from him is the stability and the help when I really need it. It’s hard to let go of that desire for total understanding. But I think that’s something I’ve tried to bring into my life is to realize that I go to different people for different things.

    It’s been liberating. Cause then I’m like, not all my friends have to be great about my illness. Maybe they’re great about other things, but I have these friends who are great about it.

    Aviva: Do you think Long COVID is changing the narrative? As soon as Long COVID started being a thing, I remember just being in the car with my husband and hearing the first kind of reports of it and saying, oh, this is finally going to change the narrative and understanding and research for people with chronic fatigue, fibromyalgia, post Lyme, all the things. What are your thoughts?

    Meghan: It changes daily. Yes, it’s going to change things. It has to change things. We all have to band together in this moment and make sure it changes things. There is amidst this tragedy, which is a tragedy just beyond my ability…. It’s just an epic tragedy. We have to come together and we have to say the scope and the visibility is there. I do think it’s changing things. I think it’s going to, the secondary tragedy, the knock-on tragedy is that it’s going to take a lot longer than it should because people just… it’s hard for physicians, it’s hard for the government. It’s hard for lay people to take in the reality of these diseases. But I’m working on a long piece about Long COVID right now and reporting. And I will say, on a note of hope here, I was up at Harvard meeting with all these researchers and it was so cool and so amazing. And what they’re doing is paradigm changing, I think. And I think the answers are going to come. I do.

    Aviva: I think it’s going to provide some insights too. I remember when I was first hearing about Long COVID symptoms, I was like, well this sounds a little bit like POTS or mast cell symptoms. And I’m like, maybe low-dose naltrexone, maybe anti-inflammatories.

    Meghan: Totally. And I think there’s a lot of work around micro-clots that’s really interesting. I have a bit of Long COVID. Unsurprisingly, when I got COVID, I just didn’t handle it all that well. And so my health took two notches down last summer. It’s taken a lot of work to get back to closer to where I was. One really interesting thing has been thinking about this idea of micro-clots that are coming out in research and this idea that your blood flow is slowed. So there’s these paradigms, which even if not, that’s not the one. Something is being really seriously explored that could be at work.

    Aviva: It’s even just allowing the question in a bigger way – something is really happening. This is not mass hysteria as people were kind of leaning to at one point. There’s this sort of mass psychosis – no, something is really happening and we are living on the edge of medical knowledge.

    Meghan: And let’s get that knowledge. Also, look at funding on a really practical level. It’s getting funded. So I think that’s going to help.

    Aviva: Before we go, if you could tell your younger self anything, how old would she be and what would you tell her? Would you add to anything about listening to yourself and really trusting yourself?

    Meghan: I do wish I could go back in time and say, trust yourself listen to yourself. I think I would also add be compassionate to yourself, and it’s funny but that’s going to turn out to be one of the hardest things for you, for many of us who live with illness. And when you are having trouble compassionate to yourself, imagine for a moment someone you love and they’re going through what you’re going through and ask what advice you would give them.

    Aviva: One thing that was critically important for you was finding that place that worked for you between getting conventional testing and also the wellness integrative world. How can people in your experience, in your opinion, advocate for themselves to get these tests from their providers and also explore the integrative wellness world in a way that also doesn’t take them down a rabbit hole that may not be safe for them?

    Meghan: Absolutely. I’ll take the first part first, which is I have come to strongly feel – this would also be advice I’d give my young self – that if you’re seeing a doctor who’s really resistant when you ask for labs or when you would ask, could this be this or should I think about diet, you should just move on. I mean, in my experience it’s really hard to get a resistant position partner to become suddenly accommodating. And I spent a lot of time trapped in these relationships that aren’t working. So as hard as it feels and there’s more legwork involved, move on. There are a lot of really good conventional doctors out there who are very open-minded and great also about saying this, I’m comfortable with, this is not for this reason, and my doctor is like that, she’s awesome.

    How do we navigate integrative and alternative medicine is so much harder because it’s a more varied and complex terrain. Using your own gut check and just remembering not to just believe things you read, but to try to, as a journalist my training is to always have multiple sources confirming, but also to always ask, what if this is not true? And that training comes in really handy because it doesn’t mean I’m not going to do the thing, but I’m like, okay, well what if this is not true? And I sort of pursue, what can I find about this that’s would contradict this finding? The other thing is there’s people out there like you, who are really interested in these areas of overlap but are going to say, well, this, I’m skeptical of this for this reason, or this myth is going around, but it’s not true for this reason, but this is helpful. Luckily there’s an emerging group of people who help us do that, and I try to listen to a lot of podcasts and not always believe every comment online, but actually listen to podcasts and inform myself and bring healthy skepticism.

    Aviva: So your book was a finalist for National Book Award. Were you surprised? How did you feel when you learned that?

    Meghan: Oh my god, I screamed out loud.

    Aviva: Did you? I would too. That’s amazing. Congratulations.

    Meghan: Thank you. I was so excited. I was surprised. I mean, I’ll tell you, it goes to the heart of what we’re talking about. I was terrified to put this book in the world because I do talk about exploring alternative medicine, and people have really deep feelings. Conventional medicine is like, no, don’t do this. And some people in the wellness world are like, oh, this is great. I try to bring this, I try to be your best friend on the illness journey. Here’s what I’ve done. This is what’s helped. This is what’s not, here’s how I think about it after years. But it felt really scary, right? It’s like this is kind of uncharted territory.

    Aviva: Did you worry about being judged or losing credibility?

    Meghan: Absolutely. And I also talk about, I have tick-borne illness that hasn’t gone fully away after antibiotics, partly because I didn’t get treated for 20 years. It  doesn’t seem so wild to say that maybe that left some stuff in me that for whatever reason is making me not feel great.

    Aviva: Or just changed your immune system in ways that we don’t know how to measure yet.

    Meghan: You know the fundamental message of my book is there’s too much incuriosity and too many supposed answers where there’s still deep questions. And that felt terrifying to say out loud. I mean, it did. Who am I? I’m just a journalist.

    Aviva: We are also celebrating a paperback coming out, so can you tell everyone where to find you and where to find your book?

    Meghan: You can find your book on Amazon, barnesandnoble.com, at Bookshop.org, and hopefully your local store asks for them. If they don’t have it, they’ll order it for you. You can find me. My website is MeganORourke.com and I’m on Twitter and Instagram @Meganor, that’s M E G H A N o r. And I’d love to hear from readers. I don’t always have time to respond to each, but I read every email and we are trying to get slowly caught up. Many of you’ve been writing me. I’m trying to slowly respond to everyone.

    Aviva: You’re such a lovely human to talk with. Thank you for being here. Thank you for pushing beyond pushing the energy you had to bring this book to birth for so many people.

    For everyone listening, please get Megan’s book. But also if you have the resources, consider ordering a copy for your local library. Consider bringing a copy even if you don’t have a chronic illness or invisible illness to your primary care doctor’s office and give it as a gift because each of us making these little changes can actually change the shape of conventional medicine so that people who are sick and tired and struggling don’t only have to be the only ones doing it. Thank you everyone for listening. We’ll see you next time. And Megan, thank you again for joining me.

    Meghan: Oh, thank you so much. This was a true delight.

  • Being a Good Girl Can Be Hazardous to Your Health

    Being a Good Girl Can Be Hazardous to Your Health

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    Wonder Woman Act I

    The first time I recall exercising my personal power, and realizing it could have an impact – even on adults – was in 3rd grade.

    Mrs. Akron, my 3rd grade teacher was a bit of a tart. Always pinched, always stern. But I was smart and one of her ‘pets’ nonetheless. She loved my artwork, and requested – or more accurately, insisted – that several paintings I’d done be displayed in the glass cases lining the halls of PS 201, my elementary school. Mrs. Akron had promised me that I could take my artwork home at the end of the school year. But on that fateful day in late June she flat out refused to give my paintings back, saying they belonged to the school, not me.

    I was outraged. OUTRAGED. I planted my 3rd grader hands on my 3rd grader hips, feet hip width apart (my first ever, though unintentional, invocation of the Wonder Woman pose) in her classroom and refused to leave until she handed over my paintings. I mean I wouldn’t budge and was ultimately escorted, somewhat forcefully by the elbow, to the principal’s office down the hall. My single working mom had to leave work to fetch me from the principal’s office. When she arrived, nearly an hour later because of her commute, she asked the now very disgruntled Mrs. Akron, still at work because of me, if the artwork was, indeed, mine. “Yes, said Mrs. Akron, she painted those pictures.” “Did you tell her she could have her paintings back at the end of the school year?” my mom asked. When Mrs. Akron said yes to that, my mom said, matter of factly, “Well then, give them back to her.”

    I was heard, validated, and justice prevailed. I left school that year both with my artwork and the value of being a badass when needed, as well as the importance of validating other girls and women.

    Wonder Woman Act II

    As a home birth midwife, my self-efficacy served me well. First of all, where I practiced, in Georgia, home birth midwifery was illegal. Yet where one births and with whom is a fundamental right, and to this day Georgia not only remains the state with the worst maternal and infant outcomes at birth, but has 78 counties with no OB/GYNS  – none! So I chose to go where – well – no men were willing to go.

    Further, the disenfranchisement of home birth from the medical system, especially pronounced in when there was a transfer from home to hospital, at times required me to protect my clients from unnecessary medical procedures or tough interfaces with an historically home birth averse medical community.

    Tina was one such mom. Tina medically needed to have her baby in the hospital due to a serious condition called Rh-isoimmunization that had developed as the result of a previous fetal loss (that had occurred in the setting of conventional care and was largely unpreventable) and asked me to be with her for labor – and moral – support. Because of this complication, she’d required numerous tests and interventions throughout the pregnancy, which she graciously and gratefully underwent to protect this baby. But she didn’t want interventions she didn’t need – including an episiotomy – when she gave birth. At that time, episiotomies were done to 90% or more of women birthing in hospitals — and as midwives knew then, and the obstetric world now acknowledges,  they are – and were then – almost never necessary.

    When Tina was moments away from pushing her baby’s head out, after a peaceful 8-hour labor, the obstetrician, now sitting on a low stool at the foot of the bed, his 6’6″ frame taking up the entire space between her stirrups legs,  picked up his episiotomy scissors from his instrument tray and prepared to cut her perineum. I quickly and gently reminded Dr. Green (when I’d previously asked the nurses his first name, one nurse curtly replied, “Doctor,” such is the protected medical hierarchy) that Tina had requested no episiotomy, at which time he looked me squarely in the eyes, scissors in hand right there at her perineum, and said “Miss, I’ll do one if I damn well please.”

    My inner Wonder Woman spun into action faster than I could think.

    Immediately, instinctively, and decisively, I put my hand, like a warrior shield, right over Tina’s perineum, blocking the path of the scissors, and looked Dr. Green resolutely back in the eyes, and said, “Well, then you’re going to have to cut through me to get to her.”

    It was like a she-bear with threatened cubs possessed me. He visibly gulped, dropped his eyes, and put his scissors, neatly,  back onto the tray. Tina  birthed her beautiful, healthy 8 pound plus son moments later –  over an intact perineum. I was told that weeks later Dr. Green was so impressed by my grit and protectiveness, that he was hiring midwives to join his practice.

    Why I Won’t Stand Down: A Painful Lesson

    As a medical student, things changed. At first. I  hid my fierceness, tried to fit in,  and not make waves. I was polite, at times even contrite – not my MO as a brassy New Yorker, and didn’t openly question my professors’ and attending doctors’ decisions. I simply watched, learned, and made mental notes on what I would – or wouldn’t  do – with my own patients. After all, I wasn’t a fully-fledged doctor yet, and I was taking care of patients who were ultimately their legal responsibility. I was already different – the older, hippie midwife-herbalist in medical training. So  I remained generally quietly respectful, as if I were a guest in someone’s home.

    But it was more than that, too.

    Medical training – and medicine as a whole- is a culture in which fear is used as a tactic to get people to comply – medical students and patients amongst those people.  In the scheme of fight-flight-freeze-fawn, the common range of stress response patterns,  fawning is the expected response of medical students to the system. If you’re a woman, and even more so a woman of color, the pressure to remain silent is great – we are still expected to be seen and not heard, and to never fulfill someone else’s biases of women or Black women – being loud, shrill, difficult, or ‘a bitch.’ 

    Een with all of my knowledge and experience as a midwife, I was unprepared for just how many medical errors really do happen in the hospital and doctor’s offices and  just how many re overlooked because because nobody wants to be the one to point a finger, to make waves, to stand out, to be the messenger that gets blamed. It can be a toxic culture, and doctors in training, nurses, family members, and patients are discouraged from the “if you see it, say it” motto – even when one’s patient’s – or personal health – is  in jeopardry. 

    For example, there was the time I went to round in the morning and found that my patient’s note, hanging on the door of the room, and which I read before I entered, said my patient’s chemotherapy IV had been started that morning. But here’s the thing: My patient didn’t have cancer and or any condition for which she was scheduled to receive chemotherapy. Much to my relief, the error was in the note, not in the actual delivery of the medication. My patient was comfortably tucked in bed, no IV, while her neighbor had the appropriate treatment running into her fragile veins from an IV bag hanging just above her on its silver metal pole. Someone had just entered the medication into the wrong chart, not given it to the wrong patient. I exhaled. Whew, crisis averted. I let the team know know. “Well, all’s well that ends well,” I was told.  That time.

    In my last year of medical school, all of that compliance changed irrevocably for me. I learned, in the most painful way, that it doesn’t always end well, and that we can never remain silent, can never place fear of repercussions over getting loud when needed, of putting on our Wonder Woman crowns and unleashing our lassos of truth, when someone else needs us to advocate for them.

    Akiko was one of the loveliest women I’ve ever met. A gentle, soft-spoken but strong woman Japanese woman, in her 50s, she raised orchids, had 2 sons in their early 20s who adored her, and a tender relationship with her husband. Akiko had been in the hospital for weeks after a  bone marrow transplant for the cancer that was being successfully treated. On strong immunosuppressive medications, she was weaning off and was to finally be going home at the end of the week.

    But on Monday afternoon  of her hospital discharge week, which the family was excitedly anticipating, Akiko spiked a high fever. Her oncologist, a world famous liquid tumor specialist who has more recently assumed a major government position in COVID-19 strategy and response (no, not Dr. Fauci), said it was from her treatment and that I  just should’t worry about. My instincts and clinical judgment told me otherwise. My gut was screaming, in fact.

    On Tuesday morning Akiko again spiked a fever and was started on antibiotics, but they did nothing. She also began reporting upper right abdominal pain. I told my supervising resident and the oncologist that I’d like to order an ultrasound of her gallbladder, thinking she had a gallbladder obstruction or infection in the tubes that enter the gallbladder. They said no, and when I pushed it with the resident a few hours later, when Akiko’s temperature was 104 degrees, the resident told me that if famous oncologist thinks nothing is wrong, then nothing is wrong and I should back down.

    This scenario went into Wednesday, with fevers spiking and falling and the abdominal pain worsening. Akiko was now coughing and having difficulty breathing so I ordered a chest x-ray when neither my resident nor famous doctor were on the floor. I sat at her bedside, held her hand. She was no longer telling me about her orchids. She was listless, tired, waxing and waning in and out of consciousness.

    The results came back: She had developed Acute Respiratory Distress Syndrome (ARDS), a severe, sudden injury to the lungs caused by a serious illness – the one we are now familiar with as a result of it also being common in COVID-19, and though this was nearly two decades, it was the same deadly complication.  In her case it was caused by a necrotizing infection in her gallbladder that was also seen at the edge of that x-ray — and that was causing the abdominal pain and fevers. It wasn’t her chemotherapy or anything else. She was now life-threateningly ill. Life support with mechanical ventilation was needed. I was patted on the back (literally) by famous oncologist, who said, “Good catch, Doctor” to me. Akiko was taken to the ICU. She never left the hospital. She died the next day.

    Her family later sent me the most loving letter, thanking me for my loving support. I have it still, reread it every couple of years, and remember Akiko, and remember to never be silent. My inner Wise Woman, my Wonder Woman, became my inner guide as a result of Akiko’s unnecessary death,  and she’s my most trusted personal advisor. when I need help speaking up, she’s who I channel, my version of Beyonce’s Sasha Fierce. 

    The “Bad Girl” and the Brain Hemorrhage

    Just weeks later, on the same hospital rotation, and with that same attending oncologist, my patient – a put together even in the hospital, pixie cut- silver-haired English professor in her mid-60s, being treated for cancer – noticed that she’d been slurring her speech very slightly for the past hour or so, which she reported to me on my morning rounds, I did a routine neurologic exam at her bedside, noticing a subtle but definite deficit in what is called the rapid-alternating motion test on her left side. This can indicate a problem in the cerebellum of the brain.

    I immediately notified her oncologist – my attending – and told him I felt she needed urgent imaging, and he said, “Oh, it’s just the chemotherapy probably causing her to have a little brain fog – we call it chemo-brain.”

    Deja-vu. 

    “I don’t think so,” I said, “it’s a definite change – she and I both notice it.”

    He said it was nothing and just looked at me as if I were an irritating child.

    Wonder Woman took hold. Like I did in third grade, I stood there, hands on hips, feet firmly planted and said, “Look, just a few weeks ago a patient died here because her symptoms weren’t explored quickly enough. I’m sorry, but I am going to have to go on record that I think something serious is wrong and you’re refusing a test.”

    As a medical student, I couldn’t authorize the test without his consent.

    He looked at me shocked and barked, “Ok, get an MRI.”

    I ordered one STAT and quickly received an emergency page from radiology – radiology calls only come back that quickly when something is really wrong. The radiology resident at the other end of the line said “Hey, I just want you to know that I’ve alerted the neurosurgery team about your patient – they will be on the floor in minutes to bring her to the OR – she has a hemorrhage in her cerebellum.”

    My patient had a bleed the size of an orange in the back of her brain. Emergency surgery saved her life and her brain, and she recovered beautifully. Tears still spill from my eyes as I write this and can’t help think how different it might have been for Akiko. And so many others, if they had someone to fight for them when they’re most vulnerable, and how important it is to speak up for ourselves, even if we’re perceived as being a squeaky wheel. Because it’s not just these potentially life-threatening diagnoses that are missed, it’s the everyday stuff that women are living with – Hashimoto’s and other autoimmune conditions that can take years to get diagnosed, endometriosis which takes on average 7 to 9 years to receive a diagnosis for, and the list goes on, and it’s mostly conditions that primarily affect women that are missed and for which women are dismissed. 

    Why It’s Good to Be A Bad Patient – and a “Bad Girl” 

    This article is not about how clever I am as a diagnostician. Or how fierce I am. It’s about how not speaking up can cost someone their life – and less extremely – can leave us feeling victimized and incompetent.

    From our earlier years we’re taught to be “good girls.” We’re told to be polite, to be nice, to not interrupt, to say thank you and fake appreciation even when we don’t like something, to be pleasant. We’re taught that when boys bully us it’s because they like us. We’re told to give Uncle Charlie a kiss on the cheek even if we don’t want to. We’re directly and tactily taught to not make waves, to be seen and not heard, to not question authority, not stand up for our rights, not be bossy, not show our power, to dress down except when we’re supposed to dress up, and to say yes to everything – including unwanted work advances from people in authority, to not take it too personally, too seriously, to smile…

    The list of how we’re taught to “be good” is endless. I’m not saying we shouldn’t be decent citizens with good manners, but as I’ve taught my own daughters, there’s a difference between nice and kind. Being kind is respect for humanity, bring nice is all the rest of it. I like how Brene Brown says, “Clear is kind.” Not speaking up  and accepting what just feels wrong is also unkind to ourselves. 

    Our inner “good girl” usually starts at home, follows us through school, and stays with us for our whole lives until we free her. 

    She comes with us into the doctor’s office and the hospital.

    She’s with us in our jobs, in our workplaces and business dealings, and often even in our most intimate personal relationships. She keeps us from being fully clear and honest, and she keeps up playing small. And in healthcare, she can keep us from getting proper diagnoses and care. 

    And that’s what I’m talking about here today.

    You see, the good girl trope translates into being a good patient. Good girls don’t question authority, don’t challenge the need for the test, the diagnosis, or the treatment,  don’t say “No, I don’t want you to examine me.” Or “Thank you, I’ll just leave on my own clothing on top for the Pap smear and I’ll cover with a drape,” rather than wearing that insulting paper gown with my rear flapping in the wind. They don’t say “I think I’ll labor for a bit longer, thank you – we can revisit the epidural later. And while we’re at it, I’ll be walking around to help my labor move along” rather than being strapped into this bed by a fetal monitor and an IV. Or, “No, this symptom is definitely all ‘in my head,’ it’s not ‘just’ depression; I really am tired, losing hair, and am gaining weight for no reason.”

    Many a good girl has suffered for months – even years – with symptoms of depression, weight gain, hair loss, low immunity, dry skin, constipation, and postpartum problems – because she didn’t know she could insist on further testing or another opinion or a different medication that might reveal or improve a thyroid problem.

    Doctors and nurses, just like parents and teachers, favor the good girl patients and they dread those that are known in common medical parlance as “difficult patients.” “Compliant” is the word used to describe cooperative patients who do what the doctor tells them.

    And I promise you, it comes out in how patients are treated. Eyes quite literally roll and groans are audible when a “difficult” patient comes into the office or hospital. Difficult translates as the mothers who question whether the antibiotic is really needed for the ear infection, the pregnant women who asks her doctor was his or her cesarean section rate is, or who comes into the hospital with a birth plan. Or any of us who even question the need for a test, medication, or surgery. How many of you have been bullied into a test or procedure you didn’t want or feel was warranted by a doctor or a dentist? Made to feel you were silly, difficult, childish, stupid, irrational, overreacting? 

    These things happen every day in medicine. It’s bullying, and we get victimized because we’re afraid to speak our truth and hold our ground, which yes, is hard  – but must be done if we’re ever going to change the culture of healthcare of ourselves, our mothers, sisters, friends, daughters,  and those most vulnerable to medical mistreatment – those who are gay, trans, overweight, Black, Brown, disabled? It can be done politely, but often needs to be done firmly and definitively. Nice and kind are different. 

    The Wonder Woman Pose and Other Power Tools for Girls and Women

    Learning to say “No,” and doing so without apology or explanation,  or insisting on something we really feel we need (thyroid tests, to eat during labor, to wait 24-hours with a common, unilateral ear infection in a toddler before starting an antibiotic)) isn’t easy. It takes practice. It’s uncomfortable. People might not like you. Your doctor might seem irritated. You might sweat or feel nauseated before you say no or have to insist on something the first few times you do it. 

    But remember, fear is a primal reaction that’s meant to keep up safe, both as warning system and as a source of adrenaline that can fill us with energy, strength, and courage. It is a survival mode – and can save our lives. We sometimes learn to be good girls very young, before we even consciously know what we’re doing. In many family settings this default mode keeps us safe – which is common when there is an emotionally or mentally unwell parent, sometimes an alcoholic, or one with a personality disorder. Keeping the peace, being good, playing small, complying – all of these behaviors may have kept savage beasts calm or kept the peace, or may have been what gained praise or even love. It may have also been a way of self-differentiating in a family system with multiple siblings – often one takes the role of ‘the good child,’ of the good girl. It may also be a way we vicariously fill our parents dreams – we’re so good in school, at work, in every setting – and this becomes a means to success. Of a sort.

    So when you feel fear rising, rather than feel, freeze, or fawn, try the following to transmute the fight energy into applied power:

    1. First, quickly notice the feelings in your body, and how they want to make you react (run, fight, etc.).
    2. Then, take several deep breaths. Breathe deeply into your belly, letting your belly rise and fall with the in and out breaths. Close your eyes if you need  and can. Calm your racing heart by using your breath to get into parasympathetic mode. Yup, right then and there. You can do it subtly, but do it.
    3. Now, ease into Wonder Woman Pose: Amy Cuddy’s groundbreaking research on power poses has shown that the Wonder Woman pose is associated with increased confidence and courage. Consciously feel your feet on the floor. Put your hands squarely on your hips. Feel the strength of the Earth and the power of all women on the Earth rising up in you while you simultaneously find your center and grounding. If you’re sitting you can stand up, or take the position in your mind if you’re in a chair or for example, on an exam table in the doctor’s office (as in you want to say no to something during a pap smear but can’t just jump into Wonder Woman pose). If Wonder Woman doesn’t resonate with you, that’s cool. Find what does. Beyonce has Sasha Fierce, her powerful, not so good girl alter ego. Find your inner badass and learn how to invoke her when you need her. This is great to practice anytime you have to speak up,  before public speaking events, or applying for a job or asking for a raise – anytime you’re about to have a difficult conversation. And the more you do it, the more the power association grows – what’s wired together, fires together. 
    1. Next, take a big deep breath and say what you need to say. Strongly, clearly, firmly. Easing into icy water is never as effective as just jumping in. so imagine you are taking the plunge – and just do it!
    2. Decompress from the intensity of using your power in this way by calming your heart rate with some slow, deep breathing and congratulate yourself for speaking your truth and having courage. 

    Practice with small stuff, for example, speaking up about overly salted food that you really want to send back in a restaurant, or honestly telling the person giving you the pedicure that you’d love a quiet moment rather than hearing about her love life, or saying no thank you the next time you’re invited to something that you really don’t want to go to rather than going and wishing you were anywhere else.

    It takes practice telling the truth, speaking up for ourselves, to truly be in alignment with what we feel, what we say, what we accept. It means you have to let your inner good girl grow up into a badass woman- and that good girl has probably been with you for a long, long time. So it takes some relearning how to walk in big girl shoes. But doing so just might be transformative for you, and could be life saving for someone in your life. You’ll get there. We all will. It’s easier if we make the mutual commitment to all do it – together. In doing so, we will change the medical system, which is in bad need of a makeover. And we will change our culture. Clear is kind. 

  • Women’s Top Thyroid Questions, Answered

    Women’s Top Thyroid Questions, Answered

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    Welcome to my exciting new feature of On Health – Your Questions, Answered. 

    It’s a spin off of my super popular live Q&A sessions on Instagram. Today I’ll be reading and weaving your thyroid questions together so they form a narrative that gives you a deep dive into thyroid health – and I’ve got a special announcement. Stay tuned for the end of the show, when I tell you how you can get your Q’s – and your voice – onto the show! 

    Why thyroid? Because about 1 in 8 women will experience a thyroid problem in her lifetime. And of those who do suffer from a thyroid condition, at least 80% are women. Thyroid issues can have a significant impact on both our health and our well-being, from low mood and low energy, to poor sleep, to weight and metabolism problems that stick no matter what you do, to hormone, fertility, and menopause symptoms and problems, to long- and short-term cognitive problems from brain fog to dementia, and even bone and heart disease. 

    It’s also one of the top conditions for which women are likely to be dismissed by their doctor as “just stress,” in our heads, normal (as in “you’re postpartum, of course you’re tired”), or for which women may actually be insulted – as one of my patients’ who was fat-shamed by her doctor after gaining 30 pounds in 3 months, shared, “He told me that if I just controlled my ‘fork-to-mouth problem’ I’d not have gained the weight and I’d be able to lose it.” Let’s just say that’s all kinds of wrong and I’ll be talking about that in an upcoming episode on medical gaslighting that I’m working on. And let me add that lab tests I ran on this patient revealed she had florid Hashimoto’s – that’s why she gained that weight. 

    Finally, it’s one of the conditions that’s very hard to get your questions answered about, because on the one hand, conventional medicine is dismissive, while on the other, the functional medicine world profoundly over-diagnoses thyroid problems, and many providers in this camp will even put women on thyroid medication to help with weight loss, energy, and mood – even when there’s no detectable medical thyroid problem.

    And finally I’ve seen so many women turning themselves inside out restricting this and that because they’ve read online that gluten, dairy, grains, legumes – and pretty much everything under the sun can cause Hashimoto’s – and just end up over restricting but not necessarily getting better – or the proper treatment that might really be transformative for how they feel. 

    It’s important to me that you get the information you need – but also that you can trust. 

    So today, in answering the real questions that were sent to me,  I’m going to be doing a deep dive on thyroid health, and hopefully dispel some myths, while providing helpful guidance – and a dose of empowerment that you’ve got this should you need it now …  or later. 

    This is not meant to replace medical care – but it does cover how to figure out if you do – if you have the symptoms – and I talk about how to get your healthcare provider on your side to help you get the answers – and treatment you need. My book, Adrenal Thyroid Revolution is also an important resource, and I do see new patients in my practice, too! I’ve included bulleted points below so you can 

    And make sure to stay tuned to me through Instagram and my newsletter so you know how you can call your questions into me – LIVE – for the show! 

    Now – let’s dive into real thyroid Q’s that were sent to me on my socials – by listeners like you!

    Thyroid Overview Questions

    • Dr. Romm, I know this is basic, but what is the thyroid, anyway, for us not in the know? 
    • How do I know if I actually have a thyroid problem? 
    • What are the different types of thyroid problems?

    Thyroid Testing and Result Questions

    • What tests should you request from your doctor if you suspect a thyroid issue? And what levels are optimal? It seems to differ from practice to practice. 
    • How do I convince my doctor to do thyroid testing? What do you do to get drs to do testing if they are saying you don’t need it – or if they say your insurance won’t cover it? Or they say they won’t do it? 
    • What if my insurance really won’t cover more in depth tests?
    • Why did my doctor tell me my thyroid labs were normal, but I still have thyroid symptoms? 
    • Do I need to fast and skip my thyroid medication before getting tested? I’ve been told yes – and no – what’s the correct testing practice? 
    • Does the timing of tests matter in my menstrual cycle?

    Thyroid Antibody Questions

    • Do elevated antibodies always mean Hashimoto’s? 
    • Can TPO antibodies drop? My doctor said no, but mind did after I tried 6 months of a GF diet and taking selenium. 
    • My thyroid antibodies are always high on labs, but my TSH and other labs are  normal. What does this mean? 
    • My endo says he doesn’t want to treat anything but I have the symptoms you talk about for hypothyroid and had a miscarraige in April.
    • Are high antibodies a problem long-term? What if all other labs are normal? 
    • What is the key to lowering TPO antibodies? 

    Part 2 Coming Soon!

    Stay tuned for Part 2 – coming soon – where I’ll answer your questions about thyroid medications and integrative therapies. 

    Until then, to your health!

  • Eight Medical Myths Keeping Women from Getting Proper Diagnosis and Treatment

    Eight Medical Myths Keeping Women from Getting Proper Diagnosis and Treatment

    medical myths

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    Myths serve as powerful and inspiring stories and metaphors for life. They’ve also been used throughout history to reinforce political, religious, or other power structures – as cautionary tales of what happens when we mere mortals go up against the gods. Medicine is, without a doubt, a cultural institution and power structure, and like other systems it has perpetuated myths that keep us believing in its power, while disbelieving in our own.

    When I started on my path to becoming a midwife in 1981, it was, in part, to make a difference in the over-medicalization of birth that was already rampant at that time. I had no idea that my journey would be filled with women’s stories of how they’d been mistreated, insulted, and demoralized by encounters with medical and healthcare professionals. It was these stories that provided the intense amount of energy it took to become a medical doctor as the working mom of 4 children, and along the way to becoming a doctor, I saw far too many doctor-patient (and sometimes nurse or other provider to patient) encounters that reinforced just how difficult a road it can be for women to navigate the health care system given the many myths, biases, stereotypes, and attitudes about women and women’s bodies that remain operational modern medicine, driving so many women away from the answers and care we may desperately need, or forcing us to ‘play nice’ – to behave in ways that are inauthentic in order to get our basic medical needs met.

    In this article (and corresponding podcast) I break down 8 prominent medical myths – from ‘It’s All in Your Head’ to ‘It’s All Your Fault’ – that are alive and well, and are profoundly – and sometimes dangerously – affecting women’s health, preventing countless women from receiving important diagnoses and timely treatment – sometimes for conditions that have proven life-threatening or worse. These myths have even led to women reporting symptoms of a heart attack, sometimes different than the typical chest pain men experience, to be sent home with anti-anxiety medication – the heart attack completely missed, to women with autoimmune diseases being told their fatigue and aching are ‘just stress,’ to women doubled over with severe endometriosis pain or a ruptured ovarian cyst to be asked in the Emergency Department, “Are you sure it’s not just that time of the month?,” and frighteningly, has led to many deaths, including, notably, several recent cases in which Black pregnant women reported symptoms to their doctor, and had those symptoms minimized, dismissed or ignored. In fact, Black women are much more likely to be affected by the very conditions that are most likely to be missed and misdiagnosed and are less likely to have pain taken seriously,

    My hope is that this will help you to spot these medical myths in action, will help you see that it’s not all in your head and it’s not your fault, and help you  break free of these myths right now. And I give you tools to get more health empowered so that before these myths never prevent you from getting medical care you might need.

    Medical Myth #1: It’s All in Your Head

    If you’ve been made to feel – or have been told – that your symptoms could be all in your head, whether just stress, anxiety, or overwork, you’re not alone. Medical gaslighting is now a well-documented phenomenon in women’s medical care, and a topic I will be devoting an entire episode of my podcast to.

    Well into the 1970s, many common women’s symptoms were attributed to personality types and women’s emotional ‘whims’ or described as hysteria, a term that not only dismisses women as emotional, but which persisted literally from Ancient Greek times into the modern medical era as a diagnosable condition – appearing in the Diagnostic and Statistical Manual of Mental Disorders (DSM) until the 1980s. Hysteria, stemming from the Greek root work for uterus was originally believed to arise from a ‘wandering womb’ – that is the uterus losing its moorings in the pelvis and wandering around the body, causing everything from melancholy to madness. For the record, the uterus does not do this; it is nothing but an insulting, outdated medical term with no basis in reality.

    Common women’s gynecologic symptoms, for example, PMS, period pain, and menstrual migraines have been part of a long history of psychologizing women’s conditions. A few common examples of how very real medical conditions have been conflated with women’s personalities and behaviors, particularly when these do not conform to those expected for women, and for which women therefore did not receive a medical, but a psychological or personality diagnosis include:

    • Women with migraines were described as a having a “migraine personality,” meaning “neurotic,” ‘frigid,’ and unable to accept their ‘womanly responsibilities.’
    • Chronically painful periods were considered a symptom of a personality disorder.
    • Endometriosis was referred to as ‘the career woman’s disease,’ because it was thought to affect women who were “intelligent, compulsively perfectionist, anxious, and willing to place personal achievement over having children.” n fact, one of the treatments recommended for endometriosis even into the late 1990s was getting pregnant.

    These attributions remained in the medical literature – and wended their ways into diagnoses – and patient charts – also into the 1980s.

    Further, women have been viewed as using reproductive symptoms for personal gain – as an excuse to miss work or ditch out on our perceived “womanly responsibilities” as they were called, from housekeeping and childcare to sex!. It was also thought that we’d go from doctor to doctor until we got the diagnosis that suited our ulterior motives.

    The belief that women are hysterical – that our conditions are psychogenic in origin – persists today. Doctors far more commonly default to a diagnosis of psychologic origin in women than in men. However, instead of being told directly that ‘it’s all in our heads’, we’re now told it’s depression, anxiety, stress, or we’re given the latest diagnosis – “medically unexplained symptoms.” And if you happen to tell your doctor that that you’re under stress or that you’ve had a mental health challenge in the past, this dramatically increases the likelihood that your doctor will chalk your current symptoms up to being psychogenic. There’s even a name for this: it’s called a “meaning shift.” Women who have a mental health diagnosis in their chart – anxiety or depression, for example, which is now the case for about 1 in 4 women – are significantly more likely to have their physical symptoms written off as psychological in origin.

    On top of that, going from one doctor who didn’t find anything wrong with you, to the next doctor, has been associated with an increased likelihood that this next doctor will also consider your symptoms psychological. This is compounded if you tell that doctor that you were frustrated by the previous doctor’s lack of ability to diagnose you.

    Further, when the cause of a condition is unknown, as remains the case with PMS, endometriosis, and even most of women’s pelvic pain syndromes, it’s common for doctors to shrug these off as psychologically based. But lack of medical evidence for a condition doesn’t mean it’s not happening – it may just mean someone’s not doing the right testing or asking the right questions.

    In a recent study of women with endometriosis, one in ten women was overtly told ‘it’s all in your head” and 20 percent saw 4 to 5 doctors before receiving a diagnosis! In another study of women with endometriosis, many had struggled for at least 3 years before their condition was medically confirmed, and 50% had previously been told nothing was wrong by at least one doctor. In yet another study, 70% of teenagers with severe menstrual pain “for no apparent reason” were eventually found to have endometriosis. This problem is not specific to endometriosis (though it should be noted that at least 1 in 10 women have this condition – so it’s a major issue in gynecologic health that’s being overlooked). It is endemic in medicine. For example, when it comes to autoimmune disease, in the US, 75% of those affected are women, and it takes an average of 4.6 years and five doctors before getting a correct diagnosis – and along the way, many women are led to feel that their symptoms are not as serious as they are making them out to be, that there’s ‘nothing wrong’, that it’s just stress, that they are difficult patients – or commonly, some combination of all of the above.

    Chalking symptoms up to psychological causes not only causes women to feel self-doubt, but it often stops further inquiry into the real causes of the symptoms. It also pushes us toward trying solve physical, medical problems solely with therapy, relaxation, antidepressants or anti-anxiety medications, preventing or sometimes dangerously forestalling appropriate diagnosis or and earlier treatment.

    When a woman who has been dismissed eventually comes to me for medical care, and I’m able to confirm or provide a diagnosis, her relief fills the whole room. “I knew something was wrong,” I’ve heard so many women say. The validation that she’s not “crazy” is often the first step in her reclaiming her power and confidence. As one woman said, “If just one doctor had listened to me, I wouldn’t have lost 20 years of my life to this.”

    Bottom line: When we say something is wrong, our doctors must have enough respect to trust and believe us. If you’re being ignored or dismissed, and need tools to be more empowered in medical encounters, please listen to my podcast or read my article Being a Good Girl Can Be Hazardous to Your Health, and grab a copy of my book Hormone Intelligence which has an entire chapter on being medically empowered.

    Medical Myth #2: It’s Normal for Women to Suffer

    Who among us didn’t grow up thinking that period pain was par for the course of being a woman? Perhaps that PMS was just the way it is? Or maybe that sex is supposed to be painful?

    We’ve been taught to think it’s just normal to need to curl up with a hot water bottle and Netflix, pop Ibuprofen and call it a day (or two, or more) – on the sofa, doctors tell women women painful sex to just relax more or have a glass of wine first (not kidding here – this is a common ‘prescription’), and at best, we’re given an anti-depressant for our PMS symptoms.

    Doctors not only reinforce discomfort, suffering – and outright pain pain – as normal for women – they may be some of the biggest myth-makers. According to a recent study by Healthy Women, 1 in 3 women who were later diagnosed with endometriosis were initially told by their health care provider that her pain was “a normal part of being a woman.” Women in pain are significantly more likely than men to receive a prescription for a sedative for their pain symptoms, suggesting that we just need to relax, rather than the pain medication that might be indicated and women wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, 16 minutes more than men – which can feel like a lifetime if you’re in severe pain.

    This assumption of ‘normal’ keeps the medical profession – and us – from digging deeper when we have pain, and leads to countless missed diagnoses of endometriosis, adenomyosis, autoimmune conditions, and under-treatment of a wide variety of pain syndromes in women, including even the severe pain that accompanies sickle cell disease, which is overlaid with racism – a medically-based perception that Black women tolerate more pain, a myth perpetuated by slavers to justify abusive physical conditions, combined with the belief that Black folks are drug seeking.

    Gender biases in how pain is approached in our medical system can have serious, even fatal consequences. A study published in The New England Journal of Medicine in 2000 found that women are seven times more likely than men to be misdiagnosed and discharged in the middle of having a heart attack than men, which also explains why women in most age groups  have higher rates of death during hospitalization for heart attack than do men.

    Why isn’t this better understood? Though 70% of the people affected by chronic pain are women, 80% of pain studies are conducted on men (or male mice). Few studies have looked at gender differences in the experience of pain, but one that did found that women tend to experience more severe pain, and pain more frequently than men.

    Bottom line: If you’re experiencing pain, don’t worry about being considered a pain in the ass by your doctor – be persistent and get a proper diagnosis and treatment. Your real pain is more important than their ass!

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    Medical Myth #3: Women are Complainers

    Being stoic and ignoring our symptoms doesn’t come from nowhere. From the time we’re little girls, we’re taught not to complain. Then as teens and adults we learned that voicing our needs, expressing our dissatisfactions, our discomfort, our pain, is whining, is complaining, and is unacceptable. So, we don’t complain; instead we tough it out. We tend to make our health and well-being the lowest priorities in our lives, putting our partner’s, children’s, parents’, friends’, and even co-workers’ needs before our own. This aversion to what is considered complaining is so ingrained that studies show we even judge other women who complain harshly in the setting of support groups.

    Many women delay getting help because they worry that they’ll sound like they’re complaining, and instead, they assume they’re overreacting, or even blame themselves for their symptoms. I’ve heard many stories from women who discovered that bringing their husband, boyfriend, or father with them to appointments resulted in their symptoms being taken more seriously by their medical provider. As much as these patients find it frustrating and infantilizing to need a male presence in the exam room, they’re doing whatever is takes to get help in a system with terrifyingly little accountability.

    As much as we may recognize that the medical industry is dismissing us and we’d often prefer to avoid it, we sometimes want or need the diagnosis that will validate what we know, and feel is going on in our own bodies, and the care that ensues. So we endure the vulnerability and mistreatment, playing the good patient game, in the hopes of answers and care. We avoid seeming like we’re complaining by going silent, sucking it up, putting on a brave face. We learned somewhere along the line that voicing our real needs, expressing our dissatisfactions, our discomfort, our pain, is being too demanding.

    Further, we may intentionally downplay our symptoms and dress to appear ‘credible’ as a patient. The problem is that studies show we can’t win. If we downplay our symptoms, we run the risk of not getting any diagnosis; if we look too put together, we couldn’t feel that unwell; if we look too disheveled, we’re thought to be seeking pain killers or an excuse not to work!

    Bottom line: We lose our inner compass when becoming hyperaware of how we appear to others – a strange form of self-objectification we too often internalize as part of our socialization as women, and as part of interacting with the medical community. We’re already darn tough enough – we should have to put up with pain, fatigue, doubling up maxi-pads, or any other discomforts.It’s really important to quiet the voice of doubt in your head that starts to believe that you are ‘just complaining’ or ‘overreacting.” Not sure how to use your voice or too timid to do so? Check out my article How to Talk to Your Doctor and Get the Health Care You Need or listen to my podcast episode What’s Sasha Fierce Got to Do With It?

    Medical Myth #4: You’re a Difficult Patient

    “Where did you get your medical degree, Google University?” is a comment at least a dozen women in my practice were asked by a doctor when they presented their thoughts on what might be going on with them. The opposite of the chronic complainer myth, this is the “difficult patient” myth.

    Difficult patient is a real label, articulated commonly by doctors (or nurses), given to “that kind of patient” a.k.a. the woman who exerts herself in the doctor’s office, labor room, or in any medical encounter. The one who challenges medical authority – or simply asks ‘too many’ questions.

    She’s often a woman who has:

    • Done her own research
    • Has formulated a hypothesis about what’s going on
    • Has her own opinions
    • Wants to be pro-active in her health care
    • An interest in trying ‘alternative therapies’

    Again, medical racism adds a layer of intersectionality: any woman of color, and especially a Black woman, who express herself with any force, power, or a raised voice, may be stereotyped into the trope of a loud, Black woman – yes another way to dismiss, invalidate, and intimidate women of color from speaking up – and which keeps too many women of color from receiving not only respect – but needed medical attention.

    None of us should be accused of being difficult when actually what we are is confident, intelligent, involved, and engaged in our health. And the reality is that sometimes we do have to be what might be considered difficult – pushy, persistent, assertive. It has been statistically demonstrated that women who have had their conditions repeatedly dismissed may have to become confrontational or aggressive to advocate for themselves. It’s what saved Serena Williams’ life when she had symptoms of a potentially fatal blood clot in her lungs, told her medical team, and they told her to relax – that it was normal. Further, women with ‘medically unexplained disorders’ are far more likely to be dismissed, met with skepticism, and have negative experiences during medical encounters.

    Bottom line: While I know you’ll be walking a tightrope between pushing for the care you need and trying no to antagonize your medical provider – you have to advocate for yourself. Again check out my article/podcast Being a Good Girl Can Be Hazardous to Your Health.

    Medical Myth #5 Medical Solutions are the Only Safe and Reliable Options

    It would be nice to believe that medical practice is based on the most current, accurate, and reliable information. But that’s not always true. I can rattle off at least 10 practices, medications, or procedures that medicine was “sure” of – that turned out to be major medical whoopsies – just in the few years of my residency training!

    We don’t have to look that far back in history, either, to find examples of some major medical mistakes – Thalidomide, DES, the Dalkon Shield, and the Essure Device are examples. The scary part is that each of these products was used before it was properly researched in actual human women, and some remained on the market long after it was clear that they were causing serious harms.

    Hormone therapy is another area that has shown us just how uncertain medical knowledge can be. By the 1970s, estrogen was being taken by over 30% of women in the US, , in the form of hormone replacement, thanks in part of to a bestselling called Forever Young. – which promoted just that. Yet the first full studies of its safety and effectiveness weren’t conducted until 1991. A major study conducted in 2001 found that risks of hormone therapy in women, particularly estrogen alone and estrogen and progesterone in combination, were far greater than anticipated – causing the study to be halted prematurely.

    These examples aren’t just relics of the past. Women’s health remains big business as our expense. Two of the top income producing surgeries done in the US are hysterectomies and cesareans. One in three women will undergo one or the other – or both – in her lifetime. Yet at least 20% of both are are considered medically unnecessary and increase a woman’s risk of complications, infections, hemorrhage, and even death. And hysterectomy, when done before natural menopause occurs, increases a woman’s risks of bone loss, heart disease, and possibly dementia. In a study of the medical records of several thousand women, over a third were never informed about reasonable medical alternatives to hysterectomy, including women in their 30s, though it’s in recommended medical guidelines to do so.

    We all know people whose lives were improved or saved by a medication or surgery, but medicine’s primary credo of “first do no harm” is not necessarily what’s driving health care today, and not everything being offered to us is ‘good medicine. Diagnostic and treatment errors are a major problem women face disproportionately to men and in worrisome numbers. According to a 2015 Institute of Medicine report, diagnostic errors are a serious silent problem and a major blind spot in medicine, yet there is little to no accountability for misdiagnoses despite medical error being the third leading cause of death in the United States.

    Though we have the most expensive health care in the world, we’ve ranked amongst the most abysmal for health outcomes in the world in terms of safety and quality of care. Too often, conventional medical practices leave us trading one set of symptoms or risks for another – often unnecessarily – and sometimes the new set has more serious consequences!

    Despite our abysmal stats, we are perhaps the most arrogant medical system in the world. Most other nations acknowledge and even include a wide range of therapies in what patients may be offered or guided in using – from herbal medicine to acupuncture – yet Western medicine in the US not only has an extremely limited toolkit to offer us that includes primarily drugs and surgery – but those seeking options that are outside of this box may be mocked, disparaged, and discouraged – even when those therapies may have strong evidence behind them.

    Bottom line: A good medical provider discusses the risks, benefits, pros and cons of all medical interventions with you, informs you of alternatives, and listens with an open mind when you ask for help and information about alternatives that she/he might not be knowledgeable about. That’s the heart of what I’m here to offer you – a third way – which is a balanced approach to knowing when you need medical care, when more natural approaches are a reasonable option, what’s safe, effective, and how to be empowered in making the choices that are best your health.

    Medical Myth #6: It’s Your Fault, Especially if You’re Overweight

    As women, we’re culturally hardwired to assume we’re doing something wrong or causing our own problems, reinforced by the way we’re spoken to in the doctor’s office. We’re told it’s our diet, our lack of exercise, we’re too stressed, we’re working too hard, or it’s simply that our female bodies are – well – sort of lemons that are just going to break down – especially if we don’t care for ourselves optimally.

    Women who are overweight are especially likely to be told it’s because they’re fat – even if barely above what would be medically considered a healthy weight – which is a far wider range than convention medicine has led us to believe. Fat shaming and fat blaming are common – and aren’t even necessarily subtle or hidden. A 2003 survey of 620 primary care physicians found that more than half viewed obese patients as “awkward, unattractive, ugly, and noncompliant.”

    A 2014 study found that 53% of women interviewed had experienced fat shaming by a medical doctor while a 2016 survey found that 45% of women cancelled or delayed medical care because they feared being fat-shamed. This is a very common problem in women with PCOS, which affects up to 10 percent of women. Many go undiagnosed for years because doctors view them as “just fat.” Physicians blame these women’s excess weight on over-eating and lack of exercise rather than looking at the root cause – which in the case of PCOS is a metabolic imbalance leading to an imbalance in our sex hormones. In fact, we know that BMI is an overrated assessment and further, has been used as a medical weapon against women and people of color – blaming and shaming about weight, rather than looking at the actual condition at hand, and also ignoring social and cultural aspects that can lead to weight problems – instead, blaming the individual.

    One important step you can take when going in for a medical appointment is to join the movement of women across the country who are requesting that they be weighed routinely in the doctor’s office. You can learn more about this campaign and even download cards that read here: “Please don’t weigh me unless it’s (really) medically necessary,” adding “If you really need my weight, please tell me why so that I can give you my informed consent” that you can bring to your appointment. The cards are available in English and Spanish.

    The alternative medicine world can also make us feel that our health problems are our fault – that if we just ate ‘cleaner,’ did the right yoga class, took the right supplements, and had all the right thoughts, we’d feel great all the time. While there are practices that really can make a difference in your health, that’s a far cry from all of this being your fault!

    Bottom line: Your symptoms, your conditions, your diagnoses are not your fault and your weight may have little or nothing to do with your symptoms! So put internalized shame and blame down, and get the diagnosis you need – and if your doctor (or any provider) is blaming or shaming you, you can point out that you don’t appreciate their bias.

    Medical Myth # 7: We’re Just Small Men

    The pharmaceutical industry exerts significant influence over medical practice. In 2004 Richard Horton, the editor of one of the premiere international medical journals, The Lancet, said, “Journals have devolved into information laundering operations of the pharmaceutical industries.” It is these same medical journals that most doctors use to keep abreast of latest diagnoses and treatments that are then handed to you on a prescription pad!

    Yet when it comes to pharmaceuticals, which we should be able to assume are properly tested, safety is a major issue. Most medications have never been tested in women; before 1990 only 13% of all pharmaceuticals were studied in women at all, and the situation has improved only slightly. Yet 70% of all pharmaceuticals are prescribed to women, with half of all women over 50 are on at least two and some on as many as ten drugs for daily use. Ninety percent of women are prescribed a medication during pregnancy, however only 10% have been tested for safety on the developing baby, and 50% of those prescribed have actually been associated with fetal harm.

    Differences in how we metabolize medications puts us at major risk for adverse events compared to men. Yet research in women’s health remains a low research priority. While women in science are trying to change the research agenda to include more women conducting and participating in studies, it doesn’t change the risks of the existing medications we’re using. Even common pharmaceuticals we’ve relied on for common symptoms, ibuprofen for menstrual cramps and migraines, for example, has been associated with a significantly increased risk of heart attack in women users, and just 10 days of use has been found to reduce fertility temporarily. The track-record of safety for most pharmaceuticals may be less robust than we’d like to think. However, side-effects and risks are universally downplayed while benefits are strategically exaggerated by pharmaceutical companies and then unwittingly by our prescribing practitioners.

    Bottom line: We’re not just small men. If you start a medication and have symptoms or side-effects, remind your prescribing physician of this. And before you start one, make sure you know what the risks are.

    Medical Myth #8: “We Just Don’t Know What’s Causes That”

    If you look in any conventional medical textbook you’ll find the phrase “we just don’t know” a whole lot. We just don’t know what causes endometriosis, we just don’t know what causes PCOS, we just don’t know what causes Hashimoto’s, we just don’t know what causes Fibromyalgia, we just don’t know why women are experiencing higher rates of chronic disease than ever in history.

    The list of what we just don’t know goes on and on. And while it’s true that most doctors don’t know, because they’re not taught how to is how connect the dots on women’s health and our environment, sense of safety, trauma, socioeconomic status, racism, etc., we do know that fewer than 20% of all medical conditions are caused by genetics – and at least 80% are due to preventable or reversible lifestyle causes.

    That doctors “just don’t know” it isn’t that surprising – first of all, we’re not looking for answers in the right places, and second of all, it’s a well know statistic that it takes, on average, about 17 years for medical practice to catch onto what science knows.

    I’ve been unable to accept the answer ‘we just don’t know’ for over three decades now – and I’ve never stopped looking for deeper answers. If we were simply to look at the list of symptoms that can arise from trauma or being the victim of domestic violence – you’d see exactly what I mean. Nearly four decades of practice in women’s health has shown me that there’s a lot we do know about the root causes of many women’s health conditions – and that science strongly validates that there’s complex web of factors that influence our health – and that we can do a lot about.

    Bottom line: There’s actually a ton that we do know, with literally thousands of published scientific studies that explain exactly what these reversible lifestyle factors are and just how they’re impacting our health as women. Just because doctors don’t know it, doesn’t mean that the answers aren’t there. While answers may not always be right at our fingertips, we can look to a wider variety of reliable resources as citizen scientists and take ownership of lifestyle factors within our reach to improve our well-being.

    Breaking the Myths that Bind Us

    Until now we’ve carried a legacy of silence, marginalization, dismissal and embarrassment over our bodies, and when it comes to reproductive health issues, it runs deep. This has done wonders for the medicalization of our bodies serving the bottom lines of the medical industry, but it has done a great disservice to our health as women, and to furthering much needed research in women’s health more broadly.

    We’re never taught a good comprehensive lesson on what’s normal and what’s not, and then when we visit our doctors we feel unheard and unseen. For so long we’ve been encouraged to distrust our bodies and ourselves and that distrust has only been enforced by the medical industry. The message that we get about our bodies is that they’re unreliable and that we should quiet and ignore as much as possible. The harm done by medical biases against women, and medical ignorance about women’s bodies has led to millions of women having had medical conditions dismissed as stress, anxiety, depression – or as normal, with tremendous opportunity loss to make an early diagnosis and prevent suffering, loss, and harm.

    The truth is that we’re not complaining when we tell our care providers about our symptoms, and we’re not difficult when we advocate for our health. We’re not fabricating symptoms to get a diagnosis, and we’re not just fine when we say we’re not. But breaking the myths requires us to reject “We don’t know” as an acceptable answer, or simply accepting a diagnosis and medical treatment and moving on. Our health care providers should trust us when we say we’re sick. 

    But we have to do our part, because it’s not gonna’ happen otherwise. We have to: 

    For tips on exactly how to do all of this see my article/listen to my podcast episode How to Talk to Your Doctor and Get the Health Care You Need  and grab your copy of Hormone Intelligence to go deeper.

    Your health may depend on being a bit of a badass.

  • What New Moms Need to Know About Thyroid Problems

    What New Moms Need to Know About Thyroid Problems

    postpartum thyroiditis
    Photo credit: Maxim Vakhovskiy / @maximushka

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    I met Cynthia when she was pregnant with her second baby. It had taken her 6 years to decide to get pregnant again because she had such a devastating experience of postpartum depression after her first baby was born – all because of a missed diagnosis of Hashimoto’s thyroiditis.

    Within 6 months of giving birth to baby number one, she’d gained 25 pounds on top of the 50 she’d gained in pregnancy. She was exhausted all of the time, and felt terrible that she was often too depressed to truly enjoy her baby. Everyone told her, “Oh, it’s just normal. You’re a new mom.”

    After a year of suffering she started to wonder if she was crazy – and if she was ever going to recover. She finally found a doctor who appropriately diagnosed her with hypothyroidism, got her on medication, and her life was once again hers. But the trauma was so great that she was terrified to have another baby for fear that she’d go through that again.

    Cynthia’s story may be on the extreme in terms of the 75-pound weight gain, but I’ve heard some version of this story hundred of times.

    Hypothyroidism, which primarily affects women, is a notoriously under-diagnosed condition. The fact that the symptoms are so similar to what a woman might feel in the postpartum period – fatigue, overwhelm, hair loss, trouble losing baby weight, anxiety, and trouble sleeping, makes it even more likely that the diagnoses will be overlooked, with symptoms chalked up to “it’s normal to feel that way when you have a baby.”

    Know the Symptoms

    If you test positive for this in the first trimester or early second trimester, you are at a 40% to 60% higher risk that you could develop postpartum thyroiditis, which is why, in my opinion, it’s so worthwhile for all women to get checked for this antibody in their early pregnancy labs. If you know that you have this elevated antibody, you can start to do things to improve your antibodies.

    Postpartum thyroiditis is going to show up in one of 3 ways:

    • Hyperthyroidism
    • Hypothyroidism
    • Or hyperthyroidism that lasts for a few weeks and then turns into hypothyroidism

    Therefore, knowing the symptoms of both ends of the thyroid function spectrum can keep you alert to the possibility that you might be having a thyroid problem. It helps to think of your thyroid as the gas pedal on your car. Indeed, it is your thyroid that controls the rate of your energy use and metabolism, body temperature, heart rate, sex hormones, cognitive function, and it impacts mood and even cholesterol storage.

    [ctt template=”8″ link=”z9fXt” via=”no” ]When your thyroid is not working properly, it has an impact on pretty much every system in your body. @avivaromm[/ctt]

    Hyperthyroidism

    Hyperthyroidism is like having your foot pedal to the metal. You’re in overdrive. You’re amped up. And that explains the symptoms:

    • Nervousness, anxiety and irritability
    • Rapid heartbeat and palpitations
    • Intense appetite – famished, hungry all the time
    • Weight loss
    • Sweating
    • Difficulty sleeping
    • Fatigue
    • Frequent or loose stools

    Hypothyroidism

    Hypothyroidism is exactly the opposite. It’s like you can’t even make your foot press down on the gas pedal – your foot just won’t do it because you’re just too tired, you’re so run down, you’re so fatigued or exhausted. That explains the symptoms, too:

    • Fatigue or downright exhaustion
    • Depression
    • Decreased milk volume
    • Unexplained weight gain, inability to lose the “baby weight”
    • Constipation
    • Carpal tunnel syndrome, tendonitis, joint or muscles aches
    • Puffy face
    • Increased sensitivity to cold
    • Muscle weakness
    • Heavier than normal menstrual periods
    • Dry or brittle hair and nails, hair loss (can be confused with telogen effluvium by doctors)
    • High cholesterol

    Moms tell me that postpartum hypothyroidism is like taking care of a baby with one hand, and pushing an 18-wheeler up Mount Kilimanjaro with the other. Impossibly exhausting.

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    The Classic Postpartum Thyroid Patterns

    Approximately 20 to 30 percent of women with postpartum thyroiditis have the characteristic sequence of hyperthyroidism, which usually begins one to four months after birth and lasts two to eight weeks, followed by hypothyroidism, which lasts from approximately two weeks to six months, and then the thyroid recovers. About 20 to 40 percent have only hyperthyroidism, and the remaining 40 to 50 percent have only hypothyroidism, which begins two to six months after birth. For some women, hypothyroidism becomes chronic, especially likely if symptoms and labs haven’t resolved within a year of onset.

    The Thyroid Lab Testing You’ll Need

    While I’m firmly opposed to medical over-testing, in the case of autoimmune thyroid disorders my motto is “test don’t guess.” When you get your standard first trimester prenatal blood work done, ask to have your TPO checked. If you test positive, you can both take preventative steps during pregnancy, which I’ll share in a minute, and you can be more prepared so that if you do have symptoms, you can get appropriate treatment ASAP.

    If you’ve already had your baby, and experience any symptom of hyperthyroidism or hypothyroidism, go to your primary care provider and ask her to check your TSH, Free T4, Free T3, and your thyroid antibodies (this time get TPO and Anti-thyroglobulin antibody). See my article here on what your lab values should be.

    I always recommend that when you’re getting checked for thyroid issues, also get checked for other things that can make you feel really exhausted. For example, iron deficiency anemia, especially if you lost a lot of blood at the birth or if you had heavy postpartum bleeding. That can make you feel really tired. It can make you feel depressed. It can make it harder to lose weight. You can also get checked for vitamin B-12 and vitamin D at the same time. Vitamin B-12 deficiency can make you very tired, and typically if you’re deficient in iron, you may also be deficient in B-12 and also vitamin D. Treating all of those at the same time is a good idea and bumping up your nutrition and using the appropriate supplements.

    Be forewarned – what is recommended in conventional medicine is drastically different than what I think is optimal for women. In conventional medicine, the recommendation is frequently to hold off on treatment, and then retest in 6 or 12 weeks or so and see if the levels are still off.

    A lot of doctors are also taught that you don’t need to treat new moms until the TSH is above 10. In my practice, I treat if a woman is symptomatic above 2.5. We’re talking about a fourfold difference right there. It’s really important to push that with your doctor; there is good evidence for treating “subclinical hypothyroidism” for everything from improving cognitive function to lowering cholesterol

    In my experience, not treating aggressively leads postpartum women to have basically 6 to 12 weeks of hell and then some because it can take weeks to get on the right medication at the right dosage for you. I am very low on the medication prescribing scale. I don’t even have a prescription pad. But when it comes to Hashimoto’s, particularly for new moms, the inability to produce enough breast milk if you’re trying to breastfeed, if you are unable to connect with your baby, if you’re depressed, if your body image is down because you can’t lose the weight or you’re gaining weight, not only to mention the potential for high cholesterol, I personally recommend starting low-dose medication and titrating up until the TSH and FT4 normalize. Proper treatment is life-transforming for new moms.

    I talk more extensively about how long to stay on thyroid medication, and specifically when and how to try to wean off, in this article and podcast. Most women who develop autoimmune thyroid disease in the postpartum will have a remission within a year; however, if at one year you are still hypothyroid, which is the most common problem to persist, there’s a 54% chance that you will remain so.

    [ctt template=”8″ link=”5q2K1″ via=”no” ]Moms who are struggling with Hashimoto’s on top of the normal stresses of taking care of a baby – it’s a whole new magnitude. @avivaromm[/ctt]

    Prevention Starts During Pregnancy

    The one therapy that has shown consistently good results for preventing postpartum thyroiditis in women with high antibodies during pregnant, whether or not they have been diagnosed with Hashimoto’s disease, is giving selenium during pregnancy, which seems to act as an anti-inflammatory in pregnant women with autoimmune hypothyroidism. It can actually reduce the chances of developing postpartum thyroiditis after baby is born. The typical dose is 200 micrograms daily, and you can start it in the first trimester.

    You can also start an anti-inflammatory diet, removing common triggers of thyroid autoimmunity including gluten and gluten cross-reactives, and dairy. You can actually do an elimination diet while you’re pregnant as long as you’re making sure to get plenty of protein, vegetables, and good quality fats at each meal.

    There are also other inflammatory triggers. Stress in itself is a big inflammatory trigger, but so are things like environmental toxins, particularly plastics from drinking out of plastic water bottles or storing or heating our foods in plastic containers, so be as thoughtful as you can. You don’t want to go drive yourself crazy, but really, truly being as thoughtful as you can with your cosmetics and your body products is important. Have them be BPA-free, phthalate-free, and paraben-free, particularly if you’re at risk.

    Going Forward

    If you are pregnant and you know you’ve had Hashimoto’s or postpartum hypothyroidism in the past, it’s really important to get tested and possibly be on medication from the get-go with the next pregnancy. If you do find that you stay hypothyroid indefinitely after baby, then you want to work with your primary provider to find the right medication for you so that you can live your life optimally without struggling with miserable exhausting symptoms that also keep you from being the mom you want to be.

    American Thyroid Association, Thyroid in Pregnancy. (n.d.). Retrieved March 28, 2016, from http://www.thyroid.org/professionals/education-research/pregnancy-and-hypothyroidism/

    Azizi F. The occurrence of permanent thyroid failure in patients with subclinical postpartum thyroiditis. Eur J Endocrinol 2005; 153:367.

    Beardmore KS, Morris JM, Gallery ED. Excretion of antihypertensive medication into human breast milk: a systematic review. Hypertens Pregnancy 2002; 21:85.

    De Groot L, Abalovich M, Alexander EK, et al. Management of thyroid dysfunction during pregnancy and postpartum: an Endocrine Society clinical practice guideline. J Clin Endocrinol Metab 2012; 97:2543.

    Landek-Salgado MA, Gutenberg A, Lupi I, et al. Pregnancy, postpartum autoimmune thyroiditis, and autoimmune hypophysitis: intimate relationships. Autoimmun Rev 2010; 9:153.

    Mazokopakis EE, Papadakis JA, Papadomanolaki MG, et al. Effects of 12 months treatment with L-selenomethionine on serum anti-TPO Levels in Patients with Hashimoto’s thyroiditis. Thyroid 2007; 17:609.

    Negro R, Greco G, Mangieri T, et al. The influence of selenium supplementation on postpartum thyroid status in pregnant women with thyroid peroxidase autoantibodies. J Clin Endocrinol Metab 2007; 92:1263.

    Nicholson, W.K., Robinson, K.A., Smallridge, R.C., Ladenson, P.W., Powe, N.R. Prevalence of postpartum thyroid dysfunction: a quantitative review. Thyroid 2006;16(6):573–82

    Nicholson WK, Robinson KA, Smallridge RC, et al. Prevalence of postpartum thyroid dysfunction: a quantitative review. Thyroid 2006; 16:573.

    Premawardhana LD, Parkes AB, Ammari F, et al. Postpartum thyroiditis and long-term thyroid status: prognostic influence of thyroid peroxidase antibodies and ultrasound echogenicity. J Clin Endocrinol Metab 2000; 85:71.

    Premawardhana LD, Parkes AB, John R, et al. Thyroid peroxidase antibodies in early pregnancy: utility for prediction of postpartum thyroid dysfunction and implications for screening. Thyroid 2004; 14:610.

    Stagnaro-Green, A., Abalovich, M., Alexander, E., Azizi, F., Mestman, J., Negro, R., Nixon, A., Pearce, E.N., Soldin, O.P., Sullivan, S., and Wiersinga, W. Guidelines of the American Thyroid Association for the Diagnosis and Management of Thyroid Disease During Pregnancy and Postpartum. Retrieved from http://thyroidguidelines.net/pregnancy

    Stagnaro-Green A, Schwartz A, Gismondi R, Tinelli A, Mangieri T, Negro R. High rate of persistent hypothyroidism in a large-scale prospective study of postpartum thyroiditis in southern Italy. J Clin Endocrinol Metab 2011, 96:652–657

    Stagnaro-Green A. Approach to the patient with postpartum thyroiditis. J Clin Endocrinol Metab 2012; 97:334.

    Stagnaro-Green A, Abalovich M, Alexander E, et al. Guidelines of the American Thyroid Association for the diagnosis and management of thyroid disease during pregnancy and postpartum. Thyroid 2011; 21:1081.