How I've Experienced Medical Sexism

Early in 2016 I found myself strapped to a table waiting to be tilted until I passed out. It sounds like a medieval torture device but it was something called a Tilt Table Test, the closest thing there is to a definitive test for POTS. The doctor who was overseeing the test, let’s call him Dr. Cardiology, had only met me a month or two prior. He had run a few other tests and I’d had two office visits with him. I wouldn’t say he knew me well at that point. As I was laying there waiting for the test to begin he started to go over my current medications which included anxiety and depression meds.

I want to clarify that Dr. Cardiology is one of my favorite doctors. He has been incredibly helpful and he diagnosed me with POTS within 2 months of meeting me, after I’d had 14 years of symptoms and been to countless other doctors. But every now and then he says something stupid and this was one of those times. He said, “You don’t look like someone who has anxiety and depression.” A number of sarcastic answers popped into my head in response to that but what I actually said was, “I’ve had 5 years of therapy and several medications helping me out with that.” He kind of shrugged and moved on.

My response was a carefully cultivated one. I had learned by that time how to make sure whichever doctor I was seeing saw the specific symptoms I needed them to help me with. I didn’t need Dr. Cardiology to sort out my psychological symptoms. What I needed his help with were my physical symptoms. So I responded in a way that neither disavowed my psychological symptoms, nor emphasized them.

What Dr. Cardiology doesn’t know is that showing a medical doctor my anxiety and depression symptoms most often means that I don’t get the care I need. At that point I had spent 5 years with debilitating IBS symptoms. IBS was my first foray into the world of chronic illness and I didn’t know the ropes yet. My first gastroenterologist ruled a couple of things out and then told me I had IBS and good luck. The only advice he gave me about managing my symptoms was that I really needed to control my stress levels. Never mind the fact that my stress levels were heightened considerably by my debilitating physical symptoms.

After that I struggled through for another 2 years trying in vain to figure out a diet that would allow me to function somewhat normally. I started counseling around the time I was seeing my first GI doctor but that didn’t seem to be making a huge impact on my digestive tract (although it was helpful for my actual anxiety and depression). I wouldn’t go on to find a diet that worked for me until I saw my 4th GI doctor a full 5 years after my symptoms started. In those intervening years I was gaslighted into thinking that my symptoms were my own fault because I couldn’t control my anxiety.

I actually convinced myself that there must be more mental illness lurking in my subconscious and so I would go looking for it. Effectively that meant that even when I wasn’t feeling any anxiety or depression I went looking for it. It turns out if you spend most of your time thinking, “What could I maybe be anxious about” you are bound to find some things to be anxious about that weren’t on your mind before. So in actual lived experience, my anxiety was made worse as a result of this gaslighting from my GI doctors.

I learned through those experiences that if I showed a medical doctor any signs of psychological distress I would not get the help I needed. They would assume my symptoms were a result of either anxiety or depression and they would tell me to see a psychologist. By the time I got to the Dr. Cardiology who was administering my Tilt Table Test I knew to keep that sh*t locked down. And I did.

I do legitimately have anxiety and depression so seeing a psychologist was not a bad idea for me, but I also needed help from my medical doctors for my physical symptoms. It was not one or the other for me (and I would venture for most people). One of the many helpful things that came out of my therapy was the confidence to start telling my doctors, “No, this is not psychosomatic. If you don’t believe me I’ll happily have my psychologist call you and you can discuss it with her, but we have gone over all of this numerous times and what is happening to me now is physical.” That confidence to advocate for myself was invaluable in my hunt for the right diagnoses. That alone would have been worth doing the counseling, even if I wasn’t getting other benefits from it.

I have yet to meet a woman with a chronic health condition that hasn’t been blown off at least once by a doctor based on the idea that “it’s all in her head.”, I understand that there are lots of doctors who do not do this. Unfortunately though there are enough that have this unconscious bias for most women with chronic illnesses to quickly learn to hide any and all forms of psychological distress from medical doctors. My policy has been that if they ask me a direct question like, “Do you experience anxiety?” I will not lie to them. But I also make sure that while I’m in that appointment I am not manifesting any physical ‘tells.’ I keep my breathing regular, I don’t let myself cry, I don’t fidget. Since learning how to curate my symptoms like that I have gotten much better care from my doctors.

In an ideal world it shouldn’t be the patients job to conceal certain symptoms in order to get treatment for other symptoms, but this is not an ideal world. I generally have to be the one to decide what symptoms to talk to a specific doctor about. I have to know what exactly I am there for and what I want them to pay attention to. I essentially have to triage myself, a role for which I am immensely under qualified but for which there is no one else available. I think this role could be filled with trained patient advocates someday. Perhaps it is the job of primary care physicians but at the moment they are mostly stretched too thin to be able to do that job. I don’t know what the best solution to this problem is but in the meantime I will continue to curate what my doctors see in order to get the best care I can.