I have Long Covid. I recently got in with a cardiologist who used exactly that word—“deconditioned.”
Maybe my resting heart rate spikes to 180 bpm because I’m just “deconditioned.”
She told me many of my problems could be resolved if I “just start exercising.”
I very, very slowly and painstakingly explained (for the third time in just this one appointment) that I am a marine biologist who, prior to having Covid (and then until three months after my infection), maintained a level of daily physical activity that would be impossible for most people. Even with severe Asthma that was sometimes disabling, I lived a more active life than most.
I told her that in July I was hauling in salmon nets by-hand, hiking 10-30 miles a day, commuting on a bike, transporting hundreds of pounds of equipment on-foot in the backcountry, and I’d recently begun training as a free-diver. I was diving in a 7mm cold water wetsuits in difficult currents between small islands with relative ease.
By October, going up and down the stairs could spike my heart rate to 200 bpm and I began experiencing fainting spells for the first time in my life. I tried to dive one day and nearly fainted in the water. I hadn’t even begun a breath-hold. I was just swimming. My diving partners had to rescue me and haul me to shore, where it took me an hour to recover.
It was like night-and-day.
She said, “you could start slow.”
I said, “what exercise is slower than using the stairs? I’ve read that exercise might actually harm me rather than help…”
She finally said, and this is a verbatim quote, “look, many of the women who come in here complaining about tachycardia are whackjobs. But you seem serious. I don’t know much about POTS—which I think you probably have—so I’ll refer you to my colleague.”
I was astounded that she 1. Outright called suffering patients “whackjobs” and 2. That she felt the need to specify that these “whackjobs” were women.
Presumably, men are perfectly sane and to be believed. Not like those silly women.
I could only be relieved that I somehow triggered her bias in a way that made her believe me.
What might have changed that? If I were fat, if I were a person of color, if I simply hadn’t lived such a rigorous lifestyle before that convinced her that now I’m “really” sick.
Until I stated my case, multiple times, this cardiologist I waited months to see simply decided I gave up my entire lifestyle for—what?? Presumably no reason?
She heard, “I’d do anything to be active again,” and her response was, “have you tried being active again?”
And then she gave me dangerous advice. My only saving graces were that I did extensive reading before I saw her and that I matched whatever patient profile she has arbitrarily decided to respect.
Healthcare for people with new and long term dysautonomia and fatigue is a nightmare!
Unfair as it is, you must do your own research and be prepared to self-advocate—tooth and nail. And even then, it may not be enough. But do what you can.
janainaart
theartofmadeline
blakekathryn
titsay
jbbartram-illu
izzy806
stormborns
