My blog is followed by various medical professionals and when I posted my Blood Test Results this morning I received a pompous reply from a GP telling me the post was inflammatory, being a “demanding” patient gets people nowhere and I didn’t have a clue what I was talking about. Not one to shy away from criticism I thought I’d post a reply.
1. I’m sick y’know
Possibly this GP doesn’t realize the monumental effort it takes for someone with M.E. and a brain injury, who suffers from dyslexia, to write an entire blog post. Seriously, I am fucked for hours afterwards. The fact I now feel the need to write a second post in the same day is going to make me feel shit until tomorrow. That all my efforts to share my experience in the hopes of helping other people in the same boat as me is met with such lack of understanding is hugely saddening.
I am not inciting other people to act. I’m simply sharing my thoughts and experiences. If anyone else finds my experience helpful brilliant. If not feel free to jog on.
2. Doctor knows best
Until he/she doesn’t. I was born with Ehlers-Danlos Syndrome. My hypermobilty had been commented on by dozens of medical experts over the years, all of whom didn’t bother to examine me further or tie together my myriad symptoms, despite the fact they were all huge red flags for hEDS.
My own GP had never heard of the condition, and the Consultant Immunologist who I’d been seeing for over two decades with my M.E. put my widespread pain down to my hypermobility then didn’t bother to investigate the issue further, despite the fact I’d had spinal surgery for a disease rare in children but indicated in hypermobility syndromes.
If I’d left it up to any of the medical professionals I’ve seen over my lifetime I would never have been diagnosed with EDS. On averge it takes an EDS patient a decade to be diagnosed and for me it took 42 years. Even then I had to diagnose myself and persuade my GP to refer me to an EDS specialist. This is due to lack of knowledge amongst GPs in particular and the medical profession in general. Which isn’t my fault or something I should be blamed for.
When I started passing out after every meal the Gastroenterologist I saw said it was IBS. FFS! Because none of his standard, routine tests showed anything I was dismissed from his clinic with some Buscopan.
I have had to become my own expert patient. I’m sorry the GP who commented thinks that patients know bugger all about their own bodies, tests and diseases but the truth is they often know more than most all of the doctors they see especially when their disease is rare. If I hadn’t researched mast cell disease and asked my GP for a referral to Dr Seneviratne I might now be dead, because far from having IBS I was having anaphylaxis.
My GP clearly admits she knows zero about my rare diseases, so when she’s not worried about test results which may indicate kidney disease that doesn’t mean I shouldn’t be worried, because I know that mast cell disease can affect the kidneys as outlined in Dr Afrin (world expert on MCD)’s book. So maybe in a healthy person my results are nothing to be concerned about, but when you bear in mind my pre-disposing factors it’s something which warrants further investigation. My GP, unaware that MCAD might predispose me to kidney disease, doesn’t know this information so I do need to point it out and ask for further investigation because she’s not going to offer.
If being informed about my own health when my doctors clearly are not, and continuing to seek answers to my non-standard symptoms and test results makes me “demanding” then I guess I’m guilty. But at least I’m diagnosed which I wouldn’t have been if I hadn’t firmly pursued my symptoms regardless of the fact that my GP wasn’t concerned.
3. Experiences differ between people
I’m sure the experience of the NHS from the point of view of a busy GP is wildly different to that of his or her patients.
I was bedridden with M.E. for nearly a decade. During that time I lost my hair, speech, ability to eat solid food, had seizures, my hands and feet turned in and I was in extreme pain (to name but a few of my symptoms). But test results didn’t show anything so I was left, alone, to just get on with it. I nearly died.
The experiences of the medical profession I had during those 10 years are so horrendous they have left me traumatized and almost phobic about seeing a doctor. I was neglected, stigmatized, suffered outright hostility, blamed for my own disease, blamed for the fact I didn’t recover, disbelieved and lied about. This and my experiences of having hEDS and MCAD have hugely coloured my view of the NHS and the people who work therein. Some of whom are fabulous, wonderful, kind, caring human beings. And some of whom absolutely are not. I do hope the GP who commented on my post has watched ‘Unrest’, the docu-film on M.E. Maybe then he’d understand more my lack of faith in doctors and believing they know more than me about my body.
4. The drugs don’t work
According to this GP the Spatone I’ve been taking is next to useless, which is a surprise being as though it’s recommended by Midwives all over Britain to pregnant women who can’t tolerate regular iron supplements. Maybe my ferritin levels have increased from 18 to 46 by magic! Or maybe it’s the Spatone, cos I certainly can’t eat enough beans to have made such a huge difference baring in mind I feel nauseous much of the time.
I’m now off to collapse in my bed to recover from this bloody nonsense.