Do you know what one of the starkest thing about Covid for me is?
The sheer number of physicians who now know what MCAS is.
Just over a year ago I could say “MCAS” or “mast cell dysfunction” and most doctors/nurses would either blink at me and ask “what’s that?” or roll their eyes because it’s another one of those “yuppy” illnesses that they suspect everyone is making up because surely the body can’t do that. Surely your mast cells which regulate nearly every facet of your immune system can’t just go rogue and start killing you. Right? I mean... what... what could cause that? A virus? Haha. Yeah, right... Oh.
And now I can mention it off handedly at a pap smear appointment and the OB/GYN looks at me with profound sympathy and asks “did you get that from Covid too?”
My PCP who was always compassionate but didn’t really know much about it beyond “it’s a thing that exists” now knows what a cytokine storm is and winces with sympathy when we talk about my lungs attacking themselves.
My neurologist sympathetically clucks her tongue and sends me follow up emails about the new research coming out about the effect of mast cell dysregulation in migraines. That this research is frantically being churned out because of the number of people getting sick with covid and developing debilitating migraines in the aftermath is politely glossed over.
Every time I’ve walked into the ER since the pandemic started and uttered the words “mast cell activation syndrome” everyone knows what it means. Everyone. I mean, fuck. I had blood drawn, and I reacted to the needle, and the phlebotomist asked me if I normally break out from hives from needles, or if I started experiencing mast cell problems since getting covid.
And no. It wasn’t covid that gave me this. It wasn’t covid that gave me POTS either. Something else did. Something on par with an illness like covid that ripped my body to shreds while countless doctors looked the other way and tutted under their breath about anxiety and “if you hear hooves, look for horses not zebras.” And yes, I’m bitter and so full of rage that it took a global pandemic for illnesses like MCAS, POTS, ME/CFS and Fibro, etc. to finally gain research funding and recognition. I’m so fucking gutted and angry at the state of the world because more people are suffering and I hate it, I hate all of it. And I hate that I’m also relieved because after years of battling for help I can say the words “I have a mast cell dysfunction disorder” and the attending physician replies “oh, you know, I’ve heard of that...”
So for the love of yourself and those around you, if you’re one of the people who reads my blog and knows the absolute hell my life has been over the last few years and you’re still undecided about getting the vaccine: Get the Fucking Vaccine. You don’t want this aftermath.
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