Engaging with Internalized Ableism
I think about time as a game of rush hour. I can move things around and make things fit as long as I have an empty square that allows for the shifting. There are so many things I love to do and I jump into everything I do a little too wholeheartedly. I am constantly shifting things around to fit in a day and try to meet my needs.
An image of the game “Rush Hour”
For as long as I can remember, I have felt chased by time. I play this rush hour game because I am looking over my shoulder, trying to outrun becoming further disabled. Even though logically I know that even if I run forever, deeper disability will likely still catch up.
In December, I got COVID for the third time. The acute infection wasn’t terrible — my main symptoms were shortness of breath, chest pain and fatigue. I took 10 days off, rested as hard as I could and went back to work. But the chest pain lingered. One night, it was bad enough that it woke me up in the middle of the night. After a trip to the ER, I learned that COVID had induced pericarditis, meaning the sac around my heart was inflamed.
The looming deeper illness was creeping in at my edges, but I had a lot of other things I wanted to do this winter. I was covering for a colleague at work and I was finishing graduate school, while trying to cure my pericarditis by taking the maximum dose of Advil every day for weeks. I was no stranger to new health things just becoming part of my life, I didn’t think this one had to be different.
I did the first round of treatment and thought everything was fine! But 3 days after finishing the medication, my symptoms returned. And I started over. My rush hour empty square was filling and I didn’t have much wiggle room. And then 6 weeks into the second round of treatment, it failed again. My option became a long course of prednisone. My cardiologist told me that it would be not a great time, but probably the worst side effect would be that I gained weight.
That is not how it went.
In the first week of prednisone, my spine became incredibly unstable, I experienced every new stimuli as anxiety and anger, my autonomic nervous system was deeply dysregulated and I was not sleeping. But I was still working. My rush hour game pieces burst off the board as I tried to squeeze them back into place.
Thankfully, I have built an excellent care team and my therapist very directly named that I was not doing okay and that despite what my cardiologist said, prednisone was really intense. She suggested that I meet with my primary care doctor to get care for the side effects and get additional support, including potentially taking medical leave. I went into the appointment hoping to take a week or two off and get a hold of myself. My primary care doctor said I needed to take five weeks minimum.
My first thought was how hard that would be for my team at work and what they would think of me, instead of the fact that I needed to change something so that I could move forward. This comes from internalized ableism — the sneaky ways that the ableism in the wider world has wormed it’s way into my subconscious. Internalized ableism says that seven years of work don’t matter if I leave my team in the lurch suddenly for five weeks. Internalized ableism says if I’m well enough to spend time with a friend, I’m well enough to work full time. It is a constant judgement on how I’m spending my time and energy, especially in ways that don’t advance capitalism.
These are not based in logic! They are based in ableism! But they still felt real as I was experiencing these thoughts.
I have found myself feeling almost frantic, trying to figure out what to do with myself without being on the computer all day and trying to quiet the loud, judgmental voice in my head. In trading voice notes with another disabled pal, she said “when you’re drowning, the best thing you can do is float blissfully on your back. Even though it feels like frantically fighting is the right idea, it’s not.”
Blissfully floating on my proverbial back is literally just what the doctor ordered for my heart. But it’s also what I need to move through some deeper internalized ableism. Four weeks into my leave, I had a big enough symptom set back that my doctor asked me to take more time, for a total of ten weeks.
For the next six weeks, my aim is to blissfully float on my back. I’m leaning into long breakfasts reading on my outdoor couch, time with friends, following what I want to do while building stamina through PT and exercise for the things I need to do. I will be noticing the internalized ableism logic and taking the time to engage with it.
Working against internalized ableism will be a lifelong endeavor for me, and this feels like a turning point. Moving forward, I still want to jump wholeheartedly into the things I love, but I want more than one free space on my rush hour board to meet needs as they emerge.
If internalized ableism is feeling especially loud for you this summer, I would love to work together. Check out the scheduling link in the top right to find time to talk!
