A problem with medical stereotypes

I recently saw a question on The Mighty asking people to share what others think their condition looks like versus what it actually looks like for them. It seems intended to be an empowering question about breaking out of stereotypes, but I think of something more dangerous when I think about this question: stereotypes about conditions that are used in a professional medical setting.

Sometimes, these stereotypes are backed up by scientific evidence, but sometimes, these stereotypes are perpetuated even though they may not be true. Either way, they can be harmful for people trying to find diagnosis and treatment.

For example, I have spondylitis, a type of arthritis where the immune system attacks my joints (particularly the spine). Ankylosing spondylitis (AS) is supposed to be a man’s disease, to the point that a doctor even admitted to me once that my sex was an impediment to diagnosis. Historically, doctors believed that AS favored males in an enormous ratio of 9:1, which resulted in studies being performed mostly with male patients. Newer estimates indicate that the ratio is probably somewhere around 2:1 or 3:1, but the damage has already been done: for years, studies of symptoms and treatments were done primarily on males with AS, and the diagnostic and treatment criteria are tailored to that half of the population.

In fact, new research is finding that women with AS have different symptoms than men, with women showing more arthritis outside of the spine as well as less damage visible on imaging. Could this affect how often AS is diagnosed in women, and also how effective recommended treatments are? Undoubtedly. Women typically have a larger delay in diagnosis, and multiple studies show that women have a lower quality of life with AS, even though men with AS typically have more extensive damage visible on imaging.

It took me years, and many doctors, to get the treatment that I needed for my spondylitis. And I’m not the only one. My mom’s ankylosing spondylitis went undiagnosed for at least ten years because she was a woman in her 40s-50s complaining of joint and back pain (AS typically shows up before 45). I know somebody who couldn’t get a diagnosis for his fainting because he had postural orthostatic tachycardia syndrome, a condition that’s supposed to affect women 5:1. I’ve heard doctors not believe that my uncle has type 1 (“juvenile”) diabetes, because he was diagnosed at 35 and it’s supposed to develop when you’re young.

Using broad categories (gender, race, age, weight, and other things) undeniably makes diagnosis and treatment faster in many cases. But when assumptions about who can have a condition are relied on too heavily, it can be harmful to patient outcomes, and even potentially dangerous. One condition cited a lot is heart attacks, which are more common in men and can vary symptomatically between men and women, resulting in a lower-than-actual rate of diagnosis in women. When it comes to the heart, that misdiagnosis can quickly be deadly.

Men can get diseases like rheumatoid arthritis and migraines, just like women can get ankylosing spondylitis and have heart attacks. Thin people can get type 2 diabetes, and overweight people can get type 1. Older people can get autoimmune arthritis just like they can get osteoarthritis.

Unfortunately, no single person has the power to change long-standing views about conditions. But if we share our stories, our experiences, we can create a narrative that shows the diversity of our conditions and allows people to recognize problems and advocate for themselves. And maybe more doctors will hear us: see us, and our symptoms, not a list of characteristics to check off.

-Bri

I love creating resources like this, but each one takes a lot of time and research. If you liked this post, consider supporting the site with a coffee! Thanks! <3