The “demanding” patient

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.



15 thoughts on “The “demanding” patient

  1. vronella

    Good on you Jax !
    Having followed your blog for a long time I am amazed at the knowledge you have about your complex medical issues, and the sometimes brick wall you seem to hit when trying to get things over about these issues. Whilst most in the medical profession are good, dedicated and want to help their patients, some seem to need training in bedside manner, listening to their patient and maybe looking up things they know little about. Not everyone can be an expert on all things , that’s why their are medical books and journals.
    You keep fighting for good treatment and just ignore the negativity of some people.
    If it works for you, it is good for you.


  2. Glo

    Took a decade to be diagnosed with MCAD and then was just pretty much left to explore my options for treatment.
    I have had to figure out what to eat etc. My GP also is fairly useless with my MCAD and pernicious anemia.

    Liked by 1 person

  3. Jack

    Further to my comment, on the website is published a research paper “Management of iron deficiency in pregnancy.”
    The conclusion is” (The) result showed Spatone is well tolerated and has a positive effect on iron stores.”

    Just as you suggested JA, the arrogant G.P. was talking shit.

    Liked by 1 person

    1. Janjay

      I suspect the arrogant GP thinks there isn’t enough iron in Spatone to make an appreciable difference. Certainly there is less than in tablets you may be given. However, the whole point of Spa tone is that it is in a form that is readily assimilated by the body and therefore more is absorbed. Also it is gentle on the stomach and therefore useful for people who struggle with the side effects of iron tablets, one of which is constipation, a bane of pregnancy!
      I have used it and found it effective. This guy doesn’t know as much as he thinks he does. Mmm….sounds like many doctors I’ve met!

      Liked by 1 person

    2. Jak Post author

      Thanks for that info Jack. I’ve also read that research paper because being a responsible patient I did some readiing up before deciding what to take for my low ferritin levels x

      Liked by 1 person

  4. Ellabella

    I’m a newbie to your blog- and am pretty much squaring up to all your diagnoses. ME, EDS HT and off to see Prof Seneviratne on Monday. It took 39 years for my EDS diagnosis…. I hugely appreciate your writing; I feel much less alone and buoyed up by your pithy and acerbic wit. Thank you for taking the time. As for the GP who posted those offensive comments- what a relief they’re no longer working in the UK. I was absolutely shocked and appalled by such a hateful and ignorant attitude, I have no idea why they practice, so disrespectful and rude. Thought you took them down very well. Perhaps they’d like to give some thought to the amount of effort and intellect it might take a layman to find their own diagnosis, and to reflect on the knowledge that layman may have acquired along the way. It was only a genuine interest in the human body, plus my Aspie ways that found my conditions, certainly not any GP I’ve seen. I suspect this GP, although allegedly qualified, is not the sharpest knife in the drawer. It’s always the least intelligent who are the most sure of themselves.


    1. Jak Post author


      Thanks for taking the time to comment and I’m so glad you’re finding my blog helpful. I’d be incredibly interested to find out how you get on with Dr S, so do please let us all know. It’s been over 4 years now since I saw him and things have moved on very quickly in the MCAD world. Would be great to know what testing etc. he now recommends. Good luck!

      Jak x


  5. Ellie

    A GP has to study for five or more years? and a specialist more than that. Most sick people have been observing their illness for a great many years and now with the internet we can study our illness. We can then retrospectively look back & make some sense of whats been going on. I’ve been studying my illness & looking for answers for 12+ years, I’ve kept diaries, I tried exclusions diets, exercise, herbs & God only knows what. GPS and even specialists cant know everything there is to know and a great many people fall through the net. Jak be as demanding as you need to be – its your life, your health and if you don’t look out for yourself who is going to stand up for you?

    Liked by 1 person

  6. Kristyn

    Excellent post. Thank-you, I hear you. I believe I have EDS but do not have a diagnoses. I just started a blog with a little of my story if interested


  7. Karen, The Walking Allergy

    The ONLY reliable source of information about how to treat my MCAS is my own body. Every single time I have followed anybody’s advice over what my body was telling me, I have suffered for it. (makes me sicker. Every time I have ignored a physician and done what made sense to me, I get better. High BP, add salt. Hormone issues- stop taking any hormones. Two years ago I still had faith in the medical system, but I was dying. I changed my approach. If it doesn’t ring true for me, I’m not doing it. And I’m not dying anymore (any quicker than anyone else, of course!). Until medical schools devalue memorization and value deductive reasoning, it won’t change. Physicians who think that THEY know my body better than I do is wrong. Simply dead wrong. The number of impossible things my body does… yes, I CAN taste if I’m going to react to something after one bite, yes, I can dislocate joints with zero pain, yes, I can tell what my BP is, and yes, I can taste the rubber chemicals in that IV bag. What drives me most nuts is that doctors haven’t got a clue what kind of potential their patients have. They tell everyone to go do their mindfulness meditations, but then when they start to hear their bodies signals again, they are dismissed.
    SO frustrating. But maybe it will make her think.



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