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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.
