I remember reading some passages in a book that did a hilarious bit about philosophers, but now I can’t remember the source. The source was supposed to be an analogy for things people thought they knew, but didn’t, and were instead clinging to a useless ideal. It might have been Taylor Swift related—she’s my age yet the queen of reinventing and new perspectives in her career. No. Now that I’ve been revising, it was in Jenny Offill’s Weather.
How about we start here. A few weeks ago, a friend posted about National Eating Disorder Awareness Month in a way that helped me articulate some feelings that have been brewing in my mind. She asked people to think about how they perceive eating disorders. Frustrations I have about chronic illness clicked. I am not looking for you to say that I’m a warrior, or that this journey has made me strong. Having a chronic illness isn’t a special superpower. There are other, less devastating, ways to build resilience. How about something that has an end date? Instead, I want you to listen and think about your world view.
I’m looking at you to reflect on how you understand chronic disability, chronic illness. Think about how it shows up in the workplace, your social life, your response to the pandemic. Read 17 Facts About Endometriosis That Show Just How Horrific This Disease Is and think about what a good day with a chronic condition is like.
I want simple things. I almost wrote girly things, but that’s a way to soften and gender the language. I’m not really interested in softening when women have had to do that for centuries. So I want these things: healthcare coverage. Job security. A step back from the toxicity of the grind culture. Will anyone log off their work email? Sympathy is useless without systemic change.
Many advocates are doing an incredible job educating about endometriosis this month. I am thankful for them. They are the people that taught me where to look for care. Advocates teach people how to speak in a doctor’s office, and to trust that you can fire a doctor if the doctor isn’t listening. Speaking of moxie, the only part of Moxie I loved was how Vivian’s nomination for “most likely to follow the rules” spurred a zine-lead revolution.
Solidarity in the endometriosis community felt forced early in my journey. Most of what I saw was about fertility, rather than quality of life. Years of pain led me to disassociate from my uterus. I don’t associate fertility with womanhood. I just—have a meat sack and I can do things with it when I’m relatively well, like running and circus arts. Long hair and cat eyes are fun too. If you spend some time thinking about your gender performance, you may notice biology and gender are not truly connected.
More people are getting behind the queer community, behind the fact that equitable access doesn’t exist until everyone is involved. More people are yelling that ever about a disease that takes on average 8 years for diagnosis. More people are yelling that bipoc patients face greater barriers from systemic racism in medicine. I am so grateful for Cori Smith, Lara Parker, @endoqueer, @crampedstyleblog, @beelynnnyc, @endo_black, @southasianwarriors, and more.
Books I’m thinking about/recently read:
- Weather by Jenny Offill
- Stunt by Saida Agostini
- Fake Like Me by Barbara Bourland
Stay sweaty and glittery. Black Lives Matter.