Wednesday, September 8, 2021

Invisible Illnesses and Covid-19

 It is terrifying to have an invisible illness during Covid-19. Mine is a fatty acid oxidation disorder (CPT2). I know of somebody with CPT2 who ended up on dialysis after catching Covid-19. His only Covid-19 symptom was a high fever (vaccinated, so asymptomatic other than the fever), but unfortunately high fevers and viral infections are well known and powerful triggers for CPT2 muscle breakdown (and loose muscle fibers are metabolized in the kidneys, up to the point of kidney failure).

The thing about CPT2 is that we look totally normal. Unless I'm having an episode you can't tell I'm a mutant no matter how hard you look. This means that when I ask somebody to please pull their mask up to cover their nose, I'm asking because catching Covid-19 means I'm almost guaranteed a trip to the hospital. Apart from my own suffering and injury, that trip to the hospital means that some other person who needs a hospital bed will be denied one. I'm not being paranoid. I'm not being selfish. I'm taking a reasonable precaution from a place of very high vulerability.

If I had a visible illness like ALS, I'd be far less likely to be yelled at or even violently attacked for simply asking somebody to follow the rules. But Fatty Acid Oxidation Disorders are not visible.

We need more awareness of invisible illnesses. I've been made to wait as long as 8 hours in the ER because I'm not visibly bleeding -- but when they finally see me and do a blood test for CK, the doctor inevitably says something like "wow, you shouldn't have been kept waiting, this is an emergency" and I get admitted. Unless you're bleeding or claiming heart issues, you are pretty much at the bottom of the triage list. This needs to change. Of course, for my fellow CPT2 patients, a quick tip: I've printed a card explaining what CPT2 is and carry it on me; I give it to the triage nurse and add "I'm really worried because I'm having massive muscle breakdown and my heart is a muscle". That at least gets me a quick blood draw, and during an episode, the blood draw results always bump me up to the top of the triage list.