A healthy mixture of strategy and caution is no stranger in the life of many women. It’s often necessary for us in work, school and even the home. One would hope that if there were to be just one exclusion, it would be healthcare.
Over and over again, women are misdiagnosed, mistreated or turned away entirely due to a lack of research and deep implicit biases. Women were not even included in clinical trials until the 1980s, ostensibly to protect the reproductive health of women of childbearing age from the unknown side effects of new medications and treatments. This exclusion resulted in drugs designed for women being approved and prescribed to them after only being tested on men, and a lack of understanding regarding how many medical issues primarily affect women.
So, how does this affect us now?
Well, to be to quite honest — the unfortunate result is one we are too familiar with: we are overlooked. We and our health concerns are often brushed off, subdued and belittled. When we are actually heard, we are often misdiagnosed and subsequently pumped full of medication designed to treat something we don’t have. Sometimes this is simply gender bias, but too many times it’s actually because the illnesses that disproportionately affect women present themselves as giant question marks in our doctors’ minds.
Take autoimmune diseases as an example. Did you know the average time it takes to receive a proper diagnosis of an autoimmune disease is 4.5 years, with an average of four doctors being seen by the time of diagnosis? Did you also know that 80 percent of patients with autoimmune diseases are women?
This extends far beyond autoimmune diseases, though. While women are less likely to get sick with infectious diseases than men, they see much higher rates of chronic health problems. While chronic diseases such as heart disease and diabetes have seen loads of research, there are countless “rare” diseases that don’t see enough research to ever make it to the forefront of doctors’ minds — and women are the ones bearing the brunt of these knowledge gaps.
Instead of admitting, “I don’t know,” it seems as though many doctors would rather give these women a diagnosis that lacks sufficient proof. I’ve come across endless stories of women with chronic illness sharing their experiences of diagnosis: being told it’s all in their head, receiving a misdiagnosis of anxiety or depression (enter your choice of mental illness diagnosis here), and waiting years for answers are all too common.
I know that to be the case with my own experience.
At 14 I started having daily migraines, debilitating fatigue, brain fog, muscle pain, joint pain and hot flashes (yes, you read that right — a 14-year-old with hot flashes). I was poked, I was prodded, I was sent through machines that would trigger even the mildest of claustrophobics. I was a medical mystery.
The first diagnosis I received? Anxiety. Did I actually have anxiety? Absolutely. But not because of a generalized anxiety disorder that was causing all of the other symptoms. I had anxiety because my doctors wouldn’t listen to me. Cue the vicious cycle.
This is when I started learning how to play the game. I quickly understood that my perceived credibility as a high-school-aged girl was low. People (even doctors, unfortunately) assume school is stressful and girls are dramatic. From that point on, I was very careful with how I would present the order of my symptoms — especially when talking about panic attacks. Did the headache happen before the panic attack? Or did the panic attack trigger the headache? Even if the panic attack did trigger the headache, I would no longer admit it. I knew something beyond anxiety was wrong with me, and I was determined to make others know that, too.
Next up on the list? Hormonal imbalance. Seems like the easy answer for a young girl with unexplained health problems, right? Yeah, maybe… until the treatments regulated my hormones but didn’t take away my symptoms.
Eventually, I traveled halfway across the country for a nationally recognized practice that specializes in headaches. They also proclaimed me a mystery, but not before sending me over to their in-house psychologist for a quick mental evaluation (who, after meeting me while I was fasting all day for blood work, probably diagnosed me with a severe case of grumpy).
The order of appointments from then on out is pretty murky, but I’ll give you an overview: there was counseling for the anxiety, physical therapy for the joint and muscle pain, acupuncture for just about everything, infusions, chiropractic adjustments, medications and supplements just for the sake of supplements.
When I finally found answers, it took me explicitly requesting that I be specifically tested for postural orthostatic tachycardia syndrome (POTS) before I was actually diagnosed with it. Two years of being tested, then questioned, then doubted, and who ended up diagnosing me? Me.
You may not be surprised to learn, then, that 80 percent of POTS patients are female, and the average time it takes to diagnose is 5 years and 11 months. In the five years since my diagnosis, I’ve watched the Google classification of POTS change from “rare” to “common.” This isn’t because it was ever rare; it’s because, like so many other chronic illnesses disproportionately affecting women, it was rarely diagnosed.
So I repeat my initial question: What does this mean for us now?
Just like my diagnosis, my story isn’t rare either. I have been incredibly (albeit, oddly) blessed to have women very close to me diagnosed with the exact same problems, as well as women simply fighting alongside me. In fact, it was my best friend’s mother who originally suggested I request a POTS test — all because she recognized the same symptoms in me that she saw in her daughter daily. I also had and continue to have my own mother — my amazing, fierce, firecracker of a mother — who fought for me, flew me around the country for the best doctors, and never once gave up.
However, not everyone has such a unique and passionate support system. Therefore, there are two roles I believe we must take on:
1. We have to become our own advocates. We must educate ourselves to fill the gap that our doctors’ knowledge does not cover. We must stand firm in the symptoms we know are not all in our heads. We must push back when we aren’t content with an answer, demand tests we feel sure will be positive, and refuse to accept, “it’s a mystery” as a final conclusion.
2. We also need to become these advocates for each other. Be the parent who seeks out doctor after doctor until one of them listens to your daughter and actually hears her. Then teach your children to do the same. Be the type of person who actually believes your friend when they tell you how sick they are, no matter how sick they look. And then be the friend who actually takes the time to research their rare disease you don’t really understand.
We must be bold for ourselves and for each other, because if we aren’t willing to stick up for ourselves, who’s going to?