I have Long Covid. I recently got in with a cardiologist who used exactly that wordโโdeconditioned.โ
Maybe my resting heart rate spikes to 180 bpm because Iโm just โdeconditioned.โ
She told me many of my problems could be resolved if I โjust start exercising.โ
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 Iโd 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 hadnโt 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, โyou could start slow.โ
I said, โwhat exercise is slower than using the stairs? Iโve read that exercise might actually harm me rather than helpโฆโ
She finally said, and this is a verbatim quote, โlook, many of the women who come in here complaining about tachycardia are whackjobs. But you seem serious. I donโt know much about POTSโwhich I think you probably haveโso Iโll refer you to my colleague.โ
I was astounded that she 1. Outright called suffering patients โwhackjobsโ and 2. That she felt the need to specify that these โwhackjobsโ 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 hadnโt lived such a rigorous lifestyle before that convinced her that now Iโm โreallyโ sick.
Until I stated my case, multiple times, this cardiologist I waited months to see simply decided I gave up my entire lifestyle forโwhat?? Presumably no reason?
She heard, โIโd do anything to be active again,โ and her response was, โhave you tried being active again?โ
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 ๏ฟผarbitrarily ๏ฟผdecided 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๏ฟผโtooth and nail. And even then, it may not be enough. But do what you can.