Editor's Note: We at POPSUGAR recognise that people of many genders and identities, including but not limited to women, may or may not have female sex organs such as uteruses or vaginas. This particular story includes language from studies, organisations, and experts that generally refer to people with female sex organs as women.
Autoimmune diseases including rheumatoid arthritis, lupus [1], Hashimoto's thyroiditis, and inflammatory bowel disease affect more than 23 million Americans [2], or approximately 7 percent of the population — and the numbers only appear to be growing. Nearly 80 percent of autoimmune patients are women [3] and, although the exact reason for this is unclear, experts believe hormonal and chromosomal factors play a significant role.
Autoimmune disorders occur when the immune system mistakes healthy cells for a foreign invader and goes on the defence. The symptoms this can cause range from mild to severe, and they often ebb and flow [4], which is one reason autoimmune illnesses are difficult to diagnose. During "flares" or "flare-ups," a person's symptoms are at their worst. It's also common to have periods of remission when symptoms either improve or disappear entirely. Living with a chronic illness impacts every aspect of your life, which is something I've experienced firsthand. After five years and countless visits to doctors and specialists, I was diagnosed with lupus [5] in 2017.
By then, I'd already made significant changes to my personal life and my career. I began freelancing because the flexible hours allow me to strike while the iron's hot and get my work done when I'm feeling my best. Before I received my diagnosis and began a rigorous treatment plan that has significantly improved my symptoms, my exhaustion was so severe that simply putting on makeup and doing my hair required a Herculean effort. Every time I texted a friend to cancel plans I felt guilty, isolated, and afraid that they'd simply give up on me and stop reaching out. It took a toll on my mental health and the situation exacerbated the symptoms of my PTSD [6] and anxiety disorder.
My journey to a diagnosis was a rocky one, to say the least. Dismissive doctors told me my symptoms were most likely a side effect of my PTSD and encouraged me to focus on therapy, despite the fact that I was already meeting with a therapist twice a week. Many people are shocked to learn that it took five years and multiple doctors before I was diagnosed [7], but unfortunately, my experience is the norm. It takes an average of four years to be diagnosed [8] with an autoimmune disease. POPSUGAR spoke with experts about why these illnesses are so prevalent, why they're difficult to diagnose, and what to do if you suspect you're at risk.
Why Are Autoimmune Diseases So Common in Women?
There isn't a simple explanation for why autoimmune diseases disproportionately affect this portion of the population, but there are some theories. Magdalena Cadet [10], MD, a New York City-based rheumatologist who specialises in autoimmune diseases, told POPSUGAR that hormones likely play a role. "There are some animal studies that show testosterone is protective against autoimmune diseases [11]," Dr. Cadet said. "Women have less testosterone than men."
Researchers also believe that certain genes on the X chromosome [12] are linked to an increased risk of autoimmune illness. Because people with female sex organs have two X chromosomes, the risk of an autoimmune disorder would be increased. Melissa Munroe, MD, an autoimmune disease expert who works for Progentec [13] and the Oklahoma Medical Research Foundation [14] (OMRF), noted that studies have shown that males who have an extra X chromosome [15] are at an increased risk of developing lupus. Furthermore, some people with female sex organs have three X chromosomes instead of two — and they're also at an increased risk of autoimmune disease [16].
Some autoimmune diseases are also more common in communities of colour, for reasons that aren't entirely clear. For example, Black women are three times more likely to develop lupus [17] than their white counterparts, and data shows that Hispanic, Asian, and Indigenous women [18] are also diagnosed at higher rates [19].
Are Autoimmune Diseases on the Rise?
Markers of autoimmunity [20], as well as reported cases of autoimmune disease, do seem to be on the rise, and Dr. Cadet believes there could be several reasons for this. First, more people are aware that autoimmune diseases exist, because there's been a lot of advocacy and efforts to educate people about these disorders. Dr. Cadet also pointed out that, because more illnesses are being placed in the autoimmune category, an increase is to be expected. For example, type 2 diabetes, multiple sclerosis, and irritable bowel syndrome are now considered autoimmune diseases. But the rise in autoimmune disorders isn't simply because of increased awareness and an expansion of the definition.
"Stress in general is a factor," Dr. Cadet said. "We know that as time goes on, our lives become more stressful, and it may be triggering more disorders of the immune system." She also noted that environmental factors could play a role. "UV sunlight can trigger the onset of lupus," Dr. Cadet explained, referring to the increase in UV exposure [21] over the past several decades. She added that certain medications can cause drug-induced lupus [22], and we know that toxins in the environment have increased over time, which could put people at greater risk of developing an autoimmune disease.
When Do Autoimmune Disorders Typically Surface?
Dr. Cadet told POPSUGAR that autoimmune diseases are most often seen in people of childbearing age — which is another reason experts think sex hormones play a role. Technically, childbearing age is defined as when a person gets their first period, but Dr. Munroe noted that illnesses typically develop later in life. "It can take time," she said, adding the average age is 35.
Studies have found that some autoimmune disorders emerge earlier than others [24]. Sixty-five percent of systemic lupus patients begin exhibiting symptoms between the ages of 16 and 55, while rheumatoid arthritis typically peaks between the ages of 30 and 55. However, this doesn't mean children are immune. For example, Dr. Munroe said children do develop lupus [25] and should be treated by a pediatric rheumatologist. "There's a genetic predisposition [26] [to autoimmune illnesses]," she explained. In children, genetics may play a larger role in the development of an autoimmune disorder than in adults.
Why Are Autoimmune Diseases So Difficult to Diagnose?
Autoimmune diseases are often referred to as "the great imitators," because the symptoms overlap with a number of both physical and mental illnesses. "Many times women get dismissed as having depression or experiencing psychosomatic symptoms," Dr. Cadet told POPSUGAR. For particularly at-risk communities, racial bias in medicine [27] may make it even harder for patients to feel that their voices are heard.
Dr. Cadet noted that, even when these symptoms are taken seriously by a doctor, autoimmune illnesses can sometimes go undetected the first time a person seeks a diagnosis. "If you do get blood tests done, they're not necessarily always positive in the beginning," she explained. "If I suspect a patient has an autoimmune disease, I'll have them come back in six months to recheck blood work and antinuclear antibody (ANA) tests."
What Should You Do If You Suspect Something's Wrong?
"Start with your primary care physician to rule out other diseases," Dr. Cadet told POPSUGAR. She recommends being evaluated for heart disease and thyroid disease and then having an appointment with a rheumatologist. "They know more about what specific tests to order," Dr. Cadet said. "Even if you don't have an autoimmune illness, they can rule it out."
Unfortunately, many of us have experienced doctors who dismiss our symptoms. Studies have consistently shown that women's pain is taken less seriously than men's [28] in doctor's offices and emergency rooms, with greater disparities reported in marginalized communities, and particularly among Black Americans [29]. Furthermore, although 70 percent of chronic pain patients are women, 80 percent of chronic pain studies are conducted on men or male mice.
In my own experience, a primary care physician refused to run an ANA test when I suggested that I had symptoms of lupus. "You'll be upset if the results come back negative," the doctor told me. At this point, I'd seen approximately five doctors in New York City and Seattle, all of whom had chalked up my illness to anxiety despite the fact that I spiked 103 degree fevers on a regular basis.
We're generally conditioned to believe that doctors know best, but that's not always the case — it's important to remember that you know your body better than anyone else. If you sense something is wrong, don't be afraid to speak up and advocate for yourself if a doctor is dismissive and refuses to answer valid questions. In my case, this meant refusing to leave the doctor's office until she ran the appropriate tests. But the ordeal shouldn't have gone on for five years, during which I spent up to thousands of dollars on high copays as I went from one dismissive doctor to the next and then paid them despite the fact that they'd failed to do their due diligence.
Once a diagnosis is finally secured, it can also be difficult to find the right specialist who is equipped to prescribe the correct medications and put you on a treatment regimen that will ease your symptoms. "[Autoimmune illnesses] are heterogenous, so you could have five patients with the same illness who look different clinically," Dr. Munroe told POPSUGAR. "Even if they all talk to each other, they'll often be talking about different symptoms. It's systemic, so it can affect any part of the system." When you're seeking a specialist, it's crucial to outline your most severe symptoms, so you can ensure that you get treatment with the right specialist as soon as possible.