Strange as it seems I don’t usually worry about my health or test results too much; test results usually come back normal & for the most part I seem to know how to manage my health to keep it at it’s best given everything that’s going on. I worry more about having the tests than the results of them! It’s also unusual for me to hear worry in a doctor’s voice when they speak to me; confusion is common because lets be honest my body seems to be a bit of a mystery to most doctors. But worry isn’t something I usually hear.
So you might be able to imagine how worried I was when I received a phone call from my General Practitioner (GP) the day after an ultrasound scan; the scan was arranged to see if we could find a cause of the bladder pain I keep experiencing. However what we discovered was something of a surprise: my bladder appears fine in the scan. But it showed one of my kidneys is swollen, which sparked something of a panic (or at least the most concerned I’ve heard my GP sound in a long time!).
Urgent blood tests to check my kidney function had to be done that day, and I tell you it was a long weekend wait for the results which thankfully came back normal on the Monday morning. But it’s not the end of it, an urgent referral to urology has been made and we wait to see what they have to say.
The thing is though, is it time to worry when my GP sounds worried? Or should I be more worried in general?
My health throws up so many obstacles and the odd anomaly now that I don’t go to the doctor when most people would. I wait and see if it passes because nine times out of ten it seems to be related to flares in my existing conditions rather than anything else. With this I’ve actually had no real noticeable symptoms, unless they’re muddled in with my usual stuff. The things I worry about most are the tests (more fear of the unknown, or of fainting than anything else) and also meeting new doctors and having to explain my health. I’ve experienced so many different attitudes towards my symptoms, diagnoses and the way I manage over the years that I am genuinely scared when I meet a new doctor. I half expect to be dismissed as imagining my symptoms, or them just being a result of deconditioning, told to push myself to do more and stop using the aids which make life liveable. Attitudes towards my diagnoses vary, from understanding to utter confusion, since so many doctors still haven’t heard of hEDS and POTS.
I try not to worry about specific symptoms that much, because if I did I’d end up in a right state. There are far too many to worry about, and then there are things I’ve not realised are symptoms until a doctor tells me that’s not actually normal (for one thing I never knew it wasn’t normal for knees to bend backwards because mine always had done!) But my experiences with the medical profession has left me unable not to worry when seeing new health professionals, granted I now have some great ones treating me but I can’t forget what has gone before and to be honest I’m not sure I ever will be able to.
For now though it’s a case of more tests and more appointments with new medical professionals, and all the anxiety that now comes with that, along with the wait for test results. But fingers crossed for positive news soon!