My Illness In Numbers

I saw a thread on Twitter a few months ago where people stated the number of doctors they had to see to get their final diagnosis. This month marks my four-year anniversary with POTS. I recently sat down and considered my time with chronic illness with regards to numbers. Here’s what I came up with:

Total number of years: 4

Number of doctors: 18

Number of nurses: 11

Number of scans: 16

Number of other tests: 2

Number of medications tried: 5

Number of other treatments: 2

Financial cost (inc. loss of income): £ 65,000

Of course, these numbers are approximate and the time I had to wait for a diagnosis of POTS is well below average (the average waiting time is currently 5/6 years). Why not consider your illness in numbers, your results may surprise you.

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  1. lavenderandlevity

    I’m 9 months after actively seeking treatment for dysautonomia (POTS/OH) and 6 doctors, but only because I did my own research and figured it out when they couldn’t and demanded my own tilt test. It took another year and three more doctors (who then, of course, initially felt they had to reconfirm the dysautonomia in the process, because doctors don’t seem to take each other’s words for it) to add EDS, also reduced substantially because I figured it out first! And, I’m pretty sure half the reason I could work it out for myself that quickly was because I’m also guardian for a non-verbal sibling who is pretty much ignored by the medical community and I’ve pretty spent my entire adult life learning to be a pseudo doctor from medical journals to ensure his care. If the question is how long it took *him* to get diagnosed with the same EDS/dysautonomia that are known to run in families even *after* I got diagnosed as a first-degree relative, the answer is…how many doctors have to believe it before it counts? Because every new doctor still initially insists on calling his symptoms “behaviors” no matter what is written on his chart. Those same doctors seem fine with believing that *I* have a rare genetic illness, but somehow still not that my *first-degree* relative does, because stigma makes them insist any expression of pain is psychiatric or just how “those types” are. By that standard, I’ll probably be continuously fighting for his diagnoses to “take” for years after them…maybe the rest of his life…and Beighton Criteria be damned.

    Liked by 1 person

  2. Nubiancooki

    I don’t know that I’d have the energy to do this, but seeing yours gives me a little motivation. What always strikes me is that everyone has always had a period in YEARS before diagnosis. That’s infuriating to me, that we spend so much time going back and forth to Docs before they ever figure out what’s actually happening. It’s exhausting.

    Liked by 1 person

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