the long one about childhood illness

03 Dec, 2025

I've been thinking a lot lately about my experience with a weird, rare childhood illness again. I'll go many years without really thinking about it at all. In my Psychology of Gender class (which I hate lol)¹, the textbook we've been reading talked about how women tend to 'self-report' illness more often and go to doctors more often, despite the fact many of us have a lot of negative experience with doctors not taking our concerns seriously.

When I was in third grade, my elementary school was an old, tall building. My classroom was on the third floor. I was a very active kid, obsessed with the monkey bars and swings, always running around. One day on the way back up the stairs to class, I just... suddenly couldn't. I could not lift my leg and bring it up another step. My teacher thought I was being funny. I didn't know how to explain to her that I was being serious and I was terrified.

My mother picked me up from school and brought me to the hospital. The physician essentially told her I was being dramatic, I probably had runner's knee, and sent us on our way. In a twist no one could have predicted, it did not get better or go away! We went back again and my mother borderline verbally abused this man to demand they do bloodwork on me. He literally laughed at her, but finally put the order in.

I'll never forget this: he called her himself just a few days later and apologized profusely. I didn't have runner's knee, as we already knew, but instead had a rare autoimmune muscular dystrophy. It only affected young girls and no one had any idea what caused it. I had to start seeing a specialist - immediately.

The other thing I'll never forget: my specialist repeatedly told me I was "lucky" and that we had "caught it early." I couldn't imagine catching it any later! I mean, I literally couldn't go up the stairs anymore. How many other young girls like me were being laughed out of their doctors' offices, told they had runner's knee, and had their concerns ignored and met with derision?

Women and girls are so frequently met with skepticism in the medical field, it's a wonder any of us feel comfortable seeking help. I have avoided doctors for most of my adult life because of my experience, and I know for many others it's so much worse.

I'm lucky that the one thing my mother did right was stand up for me in that doctor's office and demand the tests to find out what was actually wrong with me. I am lucky we caught it "early," I am lucky there was a specialist in town with experience with my specific illness, and I am lucky the steroids and the chemotherapy worked on me. I have been in remission since the sixth grade, which again, I am so lucky for. Don't get my wrong, I am incredibly grateful things happened the way they did.

But women shouldn't have to get lucky to get the help and treatment they need and deserve. No one should. I wish so many of our doctors weren't so focused on profit and being 'right' that they let it cloud their ability to actually help us.