Invisible in Plain Sight
I’m starting to think that I have a black cloud that has been following me around for a while. There was the accident in 2015, and the really slow recovery that followed. The accepting that things would be ok, but very different from how they had been. The seeing a path forward and hope that there would be a future. That sort of hope hurts now and feels like a disappointment every time that I let myself believe that it might be possible.
I, like many other people, caught covid in January of 2022 and was unlucky in what followed. By March of that year it become clear that something was very wrong - it is very not normal to have a heart rate of 180 just because I stood up - I wasn’t seriously out of shape, I still walked my very old (read slow) dog every day for at least 30 minutes, but here I was struggling at times to walk to the kitchen or washroom…and don’t get me started on standing long enough to cook properly. A Cardiologist diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS) shortly after. I felt hope slipping away and that my time of life being on hold wasn’t ending, but starting over again.
It’s been 18months. Medication and a ridiculous amount of salt help, but I struggle every day to try and get simple tasks done (why is showering so freaking hard now? Why!). There are very few people who know what I am going through - not because I am embarrassed, or that I don’t want to share, but because the reaction I get from people when they learn that this happened because of covid is a real mixed bag of emotional heaviness that I can’t take on. There’s the people who are sure that it must have been the vaccine even when I tell them that the symptoms happened after covid, but months after the vaccine. There’s the people who are sure that it happened because when I had covid I didn’t do some magical thing that they read about on facebook that would have saved me. And then there is the worst of the worst - the people who outright call me a liar, tell me that I am just lazy, that I am not trying, and that I “seem fine” in that moment.
That is why I am invisible in plain sight. I go through days when I don’t leave my condo - when I’ve either passed out or almost passed out so many times before noon that I worry about it happening if I go to get groceries. There’s the days that just staying on my feet long enough to make soup takes so much out of me that eating feels too hard. The days I get so worn out that getting words out seems impossible. The days I sit on my floor trying to muster enough energy to get up and not pass out but hear people walk by in the hall going about their lives. People see me on good days forgetting that they used to see me every day.
The end of virtual doctor’s appointments were cheered by some but loathed by people like me. Transit is hard. Will I get a seat or have to struggle to stand? If I use the accessible seating is someone going to start screaming at me because I “don’t look like I deserve it”- I’ve seen it happen to others and worry about the day it will happen to me. Multiple days worth of energy getting to one appointment where no one had to physically touch me. But I push forward and get there and try thing after thing hoping for things not to get better, but just get easier. The most simple task of medical care takes so much and ends with very little gain.
All this I say not for sympathy, but to let people know, when you look at me, you don’t really see me. There are a lot more of us than anyone wants to admit so I ask this - be open to seeing people. Know people. Accept people. Let go of the fix and the blame and just see us.
