This piece will be short with a more venting tone. I’m not editing this much or letting anyone proof it, so it might be a mess. But, stick with me, because I am angry and I need someplace to put this.
As I’ve covered quite extensively in a few previous pieces (like How I Knew I Had Arthritis, Not “Just Cerebral Palsy“, My Journey to Disability Pride, and New Diagnosis), I have spondyloarthritis with sacroiliitis. It’s a specific type of inflammatory disease in which my body attacks my hip and sacroiliac joints because it misreads them as foreign. To stop my body from misreading the joints as foreign, I have to be on immunosuppressants. Without them, my condition is unmitigated and I run the risk of my joints fusing together which would make my body rigid and cause (even worse) pain. So, do I really have a choice?
Some would argue yes because I can choose to not mitigate my condition. They would say it’s up to me to pick between managing my condition by suppressing my immune system or not suppressing it and letting it fester unmitigated. They would call that my right and say I have to live with the consequences of whichever path I choose as if it’s a choice. And, while that’s technically true, I do have a choice, I don’t have a meaningful choice.
I didn’t choose (I literally had no choice) to allow my body to attack itself, but I am stuck dealing with the repercussions of it. Could I choose to stop taking my immunosuppressant medications? I could, but again, the consequences would be catastrophic. So, I can’t, knowing what I know about how my condition works, choose to stop taking them. Stopping them would kill me (either by my joints fucking together too much or the pain being too much to bear).
Because I don’t have the choice to stop my meds, there are also more repercussions. If I get sick, with any virus/acute illness (not just COVID), I run the risk of significant adverse effects (like the time strep turned into pneumonia in less than 48 hours) that could kill me. So, I am a virtual student taking courses at home. I stay in mostly. I wear masks and test when I do go out, the whole shebang. Contrary to popular belief, I don’t like being stuck at home. I don’t like missing vital information and getting sassed at when I ask for a fill-in (“This is what happens when students are virtual or not at school.” It might be, Deborah, but what should be happening is you doing your damn job to fill me in.) I wish I could go out with my friends, or at least see them during the day at school. It sucks sometimes, but the important thing is that I keep my head up.
If you feel this way too, I am with you, and we are in this together. This piece kind of took a curve in the middle of it, I feel, but I just wrote what was on my mind, the whole word vomit, and I’m about to hit publish here at 11:18 am Central Time.
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Derek I. Schmitz 