I’m struggling a bit. I had that week of good days in a row– the first I’ve had in almost 2 years- and then returned right back to my normal Long Covid baseline of exertion intolerance, oxygen desaturation, insomnia, poor and unrefreshing sleep, poor concentration, and a hard-to-describe but overwhelming sense of energy conservation and malaise. This is the normal I’ve been negotiating for 20 months and, largely, I can function inside of it (if I don’t have to work) but it’s really hard to land back here after 8 of the best health days you’ve had. Kind of a “the higher they fly, the harder they fall” kind of feeling.
One of the things on my mind through this whole process is that the nature of Long Covid (and all the other chronic, complex conditions people have that go dismissed) seems illegible to those who aren’t dealing with it directly. There is a bodily sense of exertion intolerance that is clearly a warning system and a knowing inside me that just refuses explanation. So my doctors don’t get it. My family and friends (those who aren’t also disabled by a condition like this) don’t get it. The masses don’t get it. And I keep swinging between a deep need to be seen and understood and explicable (frankly, this was my core wound before covid, too) and a deep deep sense that the energy it costs to attempt legibility is not worth it. Disabled people shouldn’t have to be legible in their illness or injury to have autonomy over their bodies, get the care they need, and have access to the world.
And yet I want to be understood. I want you (whoever you are) to understand because you most certainly have someone else with a chronic illness or condition in your life even if you don’t know it or don’t register it. (There was this incredible tweet thread about how invisible illness is only invisible to abled people and that, actually, if you know what to look for, so-called invisible illness is actually quite visible. I can’t remember anything about the author or how to find it but wanted to cite the lineage of the thought anyway.) I want you to understand the Long Covid or ME/CFS or MCAS or fibromyalgia experience because you, too, will become disabled or debilitated or both at some point. It’s not simply that you’re abled and someone else is disabled; it’s that you are pre-disabled.
But today, explicating my experience feels too hard. The post I thought I was going to write- much more rigorous in it’s citations, much more formed, much tidier delivery of concepts- requires more than I have in cognitive function today. So I’ll have to write it another day, if it comes back to me. Today is a day where I have nested all the things I might need for the day around my designated spot on the couch so I don’t have to move much. Today is a day where I’ll probably play Two Dots on my phone for hours but not actually win any levels. Today is a day where I might return to Supernatural, the show I watch when I am the most crashed and can’t do anything else. Today is a day where we’ll probably order DoorD*sh even though there’s food in the house. (I got a mean-spirited comment on a previous post about how I should have my partner go get me healthy food instead of eating junk and… let’s talk about that sometime because there is certainly nourishing food in this house; that’s not the barrier.) Today is a day where it’ll be unlikely that I respond to any messages even though I’ll spend over 7 hours on my phone. I slept over 12 hours last night and might still nap this afternoon. An illegible day.
An email interview I did back in November is part of this Yahoo Finance article about Long Covid out this week. I also borrowed my parents’ Washington Post subscription to read this deeply reported piece about Long Covid where 30 long-haulers were interviewed and definitely recommend reading it.