Our Point of View: Understanding Women’s Experiences of Chronic Illness

by Ariela Paulsen
Our Point of View: Understanding Women’s Experiences of Chronic Illness

I was in therapy. Again. 

I was having trouble making it through the workday and had started having such horrible GI symptoms each morning that I was often late. I’d get home in the early afternoon and lay down on the couch. I wouldn’t get up for hours. I knew the signs of depression and assumed it must be the culprit. And surely my heart rate suddenly spiking over 100 BPM, my random sweating and shaking, and inability to sleep were anxiety. After all, I’d seen doctors and specialists, and they all agreed it was all in my head.

Yet, my therapist disagreed. I hadn’t lost interest in life. I desperately wanted to paint and sing and teach! I just didn’t have the energy. “I don’t think you’re depressed,” she admitted, “I think you’re sick.” I was dumbfounded. The truth I’d been screaming for years, the truth that I’d buried over the last several months because no one believed me, was being reflected back at me. 

My therapist directed me to a provider in the area who had diagnosed some other patients who had come to therapy with supposedly psychosomatic symptoms. Excited and terrified, I went.

After two hours of being thoroughly heard, I had a diagnosis of a connective tissue disorder and potential comorbidities and complications to look into further. I just couldn’t believe it! On my way out, I asked why, after years of research and specialists, was I just getting this diagnosis?

“Well, there hasn’t been widespread understanding of these diseases and, historically they haven’t been well researched.” She then leaned in, almost conspiratorially, and added “I think it’s because the vast majority of patients with these issues are women. We’ve been brushed off or diagnosed with female hysteria. Now that women are getting into medical research, there’s actually work being done to help.”

I was floored. My symptoms — sudden weakness and faintness, a “delicate” stomach, fatigue, brain fog, pain, mood swings… I could picture women being ushered to a fainting couch, or administered smelling salts, and then patted on the head. 

But the reality of how this disparity continues to play out today is chilling. Even with this diagnosis, I continued to be brushed off, disbelieved, and labeled a chronic complainer. And I’m not alone.

In the US, 60% of the population has some form of chronic illness, and more than 40% have multiple. The majority of these people are women. The chronic conditions that affect women tend to also be less understood and/or more complicated to diagnose. In fact, 75% of autoimmune disease patients are female-bodied, as are 90% of Lupus patients. It takes years for women to be diagnosed, on average. Ehlers-Danlos Syndrome — a condition that is now understood to not be rare but, rather, rarely-diagnosed — takes an average of 12 years of searching before diagnosis. That’s 12 years of not being believed. And, yes, 75% of EDS patients are female-bodied.

So why is this happening?

Bias in doctors and patients

As we explored in “Bias in Medicine,” implicit bias is being studied more in medicine as it becomes clear that physicians are not above our brain’s normal process of creating biases! The long history of considering women a biologically weaker sex has left a lasting residue. What was one called hysteria has been reclassified under many names, including conversion disorder, psychosomatic, medically unexplained symptoms, or the brutal “it’s all in your head.” Doctors rarely admit when symptoms are puzzling or may be out of their scope of knowledge. Ascribing unknown symptoms to the psyche (especially disproportionately to women), takes away that person’s agency. Instead of charging forward with the symptoms they believe have a physical cause, patients are being told it’s just psychological. This creates a bias within the patients themselves, until they no longer trust their own experience. 

Lack of research

As stated in our previous post, women have been largely excluded from medical research. Around 70% of patients with “medically unexplained symptoms” are women. Perhaps this is because diseases prevalent in female bodies are not being studied by medicine, and therefore truly cannot be explained by medicine — at least until they start including women in research. This research will not happen, however, without acknowledging that these symptoms are not solely a result of the psyche.

Lack of representation

It is naturally easier to feel empathy for, and believe in, people who are similar to you. That is why it is so important to have representation! Only around a third of doctors are female, so two-thirds of the doctors we see are more attuned to male patients.

Women tend to be sick younger, and expected to not show it

Statistically, men tend to experience chronic illness later in life, or as a result of age and lifestyle. Women, on the other hand, are more likely to experience chronic illness when younger and perceived as “in their prime.” Young women are associated with fertility and health, expected to be vivacious. Women who open up about illness can meet resistance from jobs and social groups. So, they learn to not show it. Yet, when presenting as young and healthy, patients are more likely to be met with skepticism.

What can you do about it?

This discourse is starting to pick up steam! Share your experiences with friends and coworkers (and in the Friends in the Fight facebook group!). Be honest when you feel dismissed by a doctor and ask that they look into the medical guidelines for the symptoms you’ve presented. Seek second opinions. Connect with other patients who understand and can validate your experiences. And trust yourself!

Check out our 5 Tips to Self-Advocate for more!

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