I talk a lot about the struggles I face living with disability. I especially don’t pull punches when I describe my symptoms, mostly because if I’d seen someone do the same I would have been diagnosed years sooner.
What I’ve talked less about are the upsides to living with my conditions. Because—surprise—there are
I think I’ve been hesitant to broach this subject for fear I’ll be seen as relishing my conditions. That people will think I’m enjoying “playing the victim”. What I didn’t realise, until very recently, is how essential disability pride is, not just as a survival mechanism, but also one that allows us to
If you have endometriosis, you’re gonna be on the receiving end of a lot of bullshit. And I’m not even talking about the symptoms and surgeries. I’m talking about everyone and their dog asking you if you’ve tried yoga, or giving up bread, or getting pregnant, or putting pearls up your vag.
One of the more pernicious pieces of endo misinformation is that a hysterectomy will “cure” us. Nevermind that doctors that peddle this (major, life-changing) surgery often neglect to properly remove current endo growths, leaving them to shed and spread as normal. The studies are conclusive: a hysterectomy is no guarantee against recurrent endometriosis growth.
So. With all that said. Why the fuck am I having one?Read More
Final Space dropped this year and it grew on me like a beautifully animated fungus.
For those not familiar with the show, IMDB describes it as:
“An astronaut named Gary and his planet-destroying sidekick called Mooncake embark on serialized journeys through space in order to unlock the mystery of where the universe actually ends and if it actually does exist.”
I describe it as Invader Zim meets Star Wars with a dash of found-family and a nice helping of pathological sincerity. It’s great. Which of course means I’m now going to critically rip it to pieces. It’s how I show my love.
Here are some lessons — good and bad — that we should all take from Final Space.
SPOILERS AHOY! (Also very slight spoilers for The Haunting of Hill House)Read More
In between ripping out the drywall of my website I totally forgot to plug this. I got Real Life™ published for the first time for an op-ed I wrote a few weeks ago!
In itself, this is kinda a big deal. I’ve never been mainstream published before. It’s a little bit surreal, like some sort of functional adult alien has taken over my body. But on top of that is the subject matter. Because this article details a lot of the shit I’ve been dealing with regarding being sick and having to rely on welfare the last couple of years.
I didn’t realise just how much my condition has taken over my life until I wrote it all down. And it’s not even just the health aspects, though that is, of course, still a steadily burning dumpster fire. No, it’s also the fact that when I’m not dealing with shitty symptoms, I’m dealing with shitty bureaucracy and shitty treatment from people in place to uphold it.
So yeah, that’s what this article’s about. It seems to have resonated with at least 10,775 people too. So that’s…rather depressing. But that’s a subject for another post.
For now: yay I’m published! Go read the thing!
PS: It’s under my legal name which is in the process of being changed so don’t get too attached 😎
Endometriosis is a chronic condition that’s chronically misunderstood. Unfortunately, those doing the misunderstanding are sometimes medical health professionals. When I say I’m lucky to have found my gynaecologist first-go, I’m not being flippant. I did my research — read patient reviews and investigated qualifications — but so do a lot of people who wind up receiving sub-par care for this shithole of a disease.
I’ve since learned a lot more about what endometriosis is and what the industry standards for treating it are. If I had to shop for a gyno now, I’d have a lot more questions. What follows is a bunch of them.
Quick caveat: I’m not a medical professional. The following advice is the result of living with this disease, talking to specialists, and a lot of painstaking research. I’d encourage you to do your own reading, talk to your own specialists, and educate yourself about endometriosis. If you’re unsure about a course of treatment being offered to you, get a second (or third, or fourth) opinion. Doctors aren’t infallible, especially when it comes to this trashfire of a condition. But neither are randoms on the internet (like me).
The following questions are ones I’d be asking if I were shopping for a gynaecologist right now. I’m hoping they’ll serve as a jumping off point that encourages you to be proactive in your own treatment. Because, unfortunately, that’s the current endo landscape right now.
Do your research, don’t be afraid to ask questions, and trust wisely. You’re Fox Mulder and the truth is in your uterus, pals.Read More