After being hospitalized for over a week due to mysterious symptoms, I was concerned about what health condition was making me sick, but was hopeful that the rheumatologist that I was going to meet with would help me figure out what was wrong. Instead, what came out of his mouth still makes me angry to this day.
“I think you’re just anxious.”
I didn’t believe him, and I knew that I had some sort of physical illness. After a year of being brushed aside by doctors, I had decided to leave my university to seek medical care elsewhere. Although I was not diagnosed by a doctor, I knew that my symptoms lined up with an autoimmune disease. I had to self diagnose myself with an autoimmune disorder, albeit one I didn’t know the name of, because it in part legitimized my symptoms and allowed myself to more firmly express my concerns to other doctors. And it turns out I was right – a doctor later confirmed that I have systemic urticarial vasculitis.
Self-diagnosing is not something that many people want to do, but it is something that some ill people, particularly women, may feel forced to do. A study published in February 2019 in Nature Communications found that on average, it takes women four more years to get diagnosed with the same condition.* That statistic basically screams that there are problems in medicine when it comes to diagnosing women with health issues.
Women cannot be expected to wait and suffer. For some health conditions, waiting too long can prove fatal, like my undiagnosed autoimmune disease nearly became due to lack of treatment. As Last Week Tonight episode “Bias in Medicine” points out, women are far too often seen as emotional by doctors for very real physical health issues, which greatly impacts the care we receive.
I had joined Facebook groups for people with various autoimmune diseases after getting sick to try and see how fellow chronically ill people, and particularly women, were able to get diagnosed with whatever disease or diseases they had. It soon became clear that many women in these groups were originally in my shoes and had to try and self-diagnose themselves because they too had been similarly brushed off by doctors.
I was eventually able to find a doctor who took my symptoms seriously and my journey of self-diagnosis came to an end. This doctor completely understood my desire to come to the conclusion that I had an undiagnosed autoimmune disorder, as my symptoms and inflammatory markers pointed to that. A biopsy was performed and my autoimmune disorder was formally diagnosed.
More than a year after getting diagnosed, I still question how long it would have taken to get diagnosed with vasculitis if I was a man, not a young woman. In a perfect non sexist world, self diagnosing would not have to exist, because women would not be brushed off as hysterical and would have their symptoms being taken seriously.
Until then, women like myself should not be faulted for wanting to find answers for their very real health problems, even if we do not have medical degrees.
*There are unfortunately no studies comparing the length it takes for nonbinary people to get diagnosed with health issues in comparison to men and women – which is an issue in itself.