I am disabled. It’s taken me a while to come to terms with that and, honestly, I still don’t think I fully have. In 2022 I was diagnosed with lupus (SLE), and in 2023 I started showing signs of fibromyalgia on top of that. Pain and fatigue are a part of my new normal. I grew up seeing my mom be diagnosed with lupus and struggle with her own health. Later my Dad battled cancer and had his ability severely impacted as well. Despite seeing my mom and dad struggle with their own health problems, I had no idea how challenging and infuriating it would be to live with my own invisible disability.
I have to plan rest around my play. I have to wear hella sunscreen and cover up. I have to take meds morning and night. And I still don’t feel good. I do my best to wear my mask, I’ll admit it’s gotten harder as less and less people are doing it, and I always wash my hands. I caught COVID 3 times. The most recent time, I suspect I caught it from a visit to urgent care for an ear infection (lupus makes me more prone to longer lasting infections) where hardly anyone in the waiting room was masked. Despite my conditions, I was made to wait for hours on end in the waiting room. Even our healthcare system has disposed of us.
When I went to the ER last night for excruciating muscle pain, armed with my KN95 mask, I did not expect to be told that I had COVID. I thought it was another lupus flare. I also did not expect for the 4 nurses and 1 doctor who helped me throughout the course of the night to all be unmasked. Even after they read me my positive test results. The doctor actually put on a mask to tell me I had COVID, but then was suddenly maskless again the next two times he came by to speak with me and get me discharged. It would almost be funny if it weren’t so fucked up.
We live in a society that disregards the disabled, despite the fact that anyone can become disabled at any moment. COVID has only made that more apparent. But instead of coming together as a society, masking, distancing, and supporting our disabled and sick community members, many chose and continue to choose to pretend that we - the immunocompromised do not exist.That we are disposable.
I’m tired of not feeling good. I am grateful for my body for so many things, but I want to feel healthy. I’m sad that I spent much of my summer at doctors appointments and blood draws. I’m sad that, because of COVID, now I’m going to have to go to more to keep checking on my liver functions and blood cell counts. At 24 years old. I’m sad that I’ll be spending the rest of the summer isolating. I’m sad that I’ll be going back to school and having to answer students asking me “why are you wearing a mask?” And I’m sad that our community doesn’t seem to care.
Thank you to the people in my life who remind me of what it means to be in community. To hold each other. To love. Community care is the only way we will get through this.
(written on 8/4/2023)