Too Many Women With Chronic Illnesses Are Disbelieved and Dismissed

For the longest time, years upon years, before I was ever diagnosed with an autoimmune disease and subsequently dysautonomia, I was told all my symptoms were related to being a female.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

My joint pain was explained by either growing pains or my hips being wider than where my knees set.
My chest pain was explained by telling me that I’m thin and my heart is closer to my chest wall, or that I am hyper-vigilant.
My tachycardia was explained by a diagnosis of anxiety.
My fatigue was diagnosed as depression.

All of this was wrong and I spent years in pain, confused and frustrated. I consistently reminded myself that it was “all in my head” and I was just overthinking everything. This inner dialogue has led to startling complications, even after receiving a diagnosis. Sadly, I am not alone.

Medical complaints brought up by women are regularly ignored or misdiagnosed, which frequently leads to extensive diagnostic delay. The problem is, if we advocate for ourselves, we are often seen as hysterical. If we challenge a physician’s knowledge and understanding of a physiological symptom, we are deemed uncooperative or “difficult.” If we flat out disagree with a physician’s treatment plan, we are non-compliant.

In the book “Doing Harm,” author Maya Dusenbery reviews the history of women being dismissed by medical professionals, from the start where “hyster” is uterus and “hysteria” stems from having a wandering uterus. In “Doing Harm,” Maya addresses this diagnostic delay problem. “In a 1986 study, for example, researchers looked at a group of patients with serious organic neurological disorders who’d initially been diagnosed with hysteria. They identified the characteristics that made a patient vulnerable to such a misdiagnosis. One was having a prior diagnosis of a psychiatric disorder. Another was being a woman.”

I speak to women daily who describe the exact same experience. In fact, a neighbor saw the same rheumatologist I did and also had her symptoms dismissed as “being female.” We both left his office in tears. We were both later diagnosed with  Ehlers Danlos Syndrome. I recognize that physicians tend to never look for the “zebra” coming, they take the symptoms and explore the most common diagnosis. However, like so many patients with Ehlers Danlos syndrome, the diagnostic delay is partially due to medical professionals not believing there is a problem, or if they do believe it, failing to continue investigating after preliminary results come back as normal.

To test my theory that I would not be taken seriously by my daughter’s pediatrician even though I was well-versed in her symptoms, differential diagnoses and had already spoken to multiple friends who are specialized in their fields, I took my husband with me to the appointment. I walked through what was going on with her — the symptoms, what we tried to resolve her symptoms, and what I knew from the specialists I had spoken with. The pediatrician told me that her symptoms were due to dehydration.

I sat in the exam room in shock for a good minute before I told him a well-known and well-respected physician in our area would disagree with that. He claimed that physician is a “completely different thing.” At that point, I allowed my husband to take over. Every concern my husband brought up about our daughter was considered and given a thoughtful response. We left with the referral I had asked for, but instead of the pediatrician giving it to me, he agreed to give us the referral based on what my husband had said (which was almost verbatim to what I was saying). I left infuriated and my husband left horrified at what had just transpired.

In Ellen DeGeneres’ interview on “My Next Guest with David Letterman,” she says, “What most women do is, we just — we just don’t feel like we have a voice… We just don’t feel like we are worthy, or we’re scared to have a voice, and we’re scared to say no,” in response to her personal story about sexual assault. This idea that women feel like they do not have a voice extends to all areas in our lives. It is a repetitive dialogue we receive from teachers, professors, doctors, family members, etc. – that the things we say are made up and it’s “all in our heads.” When we have concerns, we are not heard or taken seriously. We are labeled as hysterical or somatizing. This dialogue is dangerous. This is the dialogue that leaves us scared to speak up.

A factor in the way women are treated by the medical community starts with biomedical research. In a 2017 article published by Harvard Health Publishing titled “Women and pain: Disparities in experience and treatment,” author Laura Kiesel describes the gender disparity in biomedical research, “[On] the issue of chronic pain, 70 percent of the people it impacts are women. And yet, 80 percent of pain studies are conducted on male mice or human men.”

In a review published by BMB Reports in 2018, “Sex as an important biological variable in biomedical research,” the author outlines the many ways in which research carried out with only male subjects harms females. While progress has been made on this front, the author points out, “Recently, prominent funding organizations and scientific journals began to take more strictly enforced measures to integrate SABV [sex as a biological variable] in preclinical and clinical studies. However, accepting SABV in the study design, data analyses, interpretation of findings and reporting is still largely insufficient among scientists.”

I recently checked what the gender breakdown was for the drug trial prior to FDA approval for one of my medications: 4,970 males and 1,535 females. Yes, only 23.6 percent of participants were female. That’s alarming. I was further alarmed that only 1 percent of those study participants were African-American (the study results do not break down how many of that 1 percent were female or male).

What should be even more infuriating is not only the treatment of women by the medical community in general, but the treatment of women of color. If I as a white woman am scared to go talk to a physician about symptoms I know are real, I can not imagine how difficult it is for women of color to be heard and receive appropriate treatment. When it comes to the treatment of women of color, socioeconomic status apparently does not matter as even Serena Williams struggles to be heard when she knows something is wrong (as outlined by the Vogue article chronicling her medical ordeal after childbirth entitled, “Serena Williams on Motherhood, Marriage and Making Her Comeback”). That is shameful.

Maya Dusenbery writes in a 2018 article for the BBC, “How Gender Bias Affects Your Healthcare,” “A 2016 study suggested that healthcare providers may underestimate black patients’ pain in part due to a belief that they simply don’t actually feel as much pain. When 200 white medical students and residents were quizzed on a series of claims about biological differences between the races, like ‘blacks’ skin is thicker than whites’,’ a full half thought one or more of the false statements were true. And, when they later read case studies of two patients reporting pain, those who had endorsed more false beliefs thought the black patient felt less pain, and under-treated them accordingly.”

This issue of women’s health issues being misdiagnosed and not taken seriously is chronic and pervasive. We women with chronic illnesses all know too well the dread of meeting with a new physician. Will they believe us? Will we be taken seriously?

One of my favorite quotes, the one that keeps me going, is by Atul Gawande, M.D., the founder of Ariadne Labs, author of several books, and currently the CEO of Haven Healthcare. “Better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try.”

My challenge to all of my fellow female chronic illness warriors is this: When you are not being heard, rise, don’t shrink. Take a stand. Look at how healthcare can be improved and tell your healthcare facilities what they can do to improve. I implore my fellow female researchers to fight for adequate representation in all areas of research.  Together, we can make this better.