Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Ignorant Drs

When you’re chronically ill you rather quickly get a feeling for the attitudes/how well informed the Drs in charge of you are on your conditions. IF you’re lucky you get a wonderful open minded Dr who takes the time to listen to you, my neurologist is a perfect example of this and has always fought for me. However, and sadly it seems more frequently, you come across Drs who are either simply not up to date (with everything they have to know this is understandable), or they just seem to enjoy being ignorant on the matter.

In 2012 I was admitted with worsening Dystonia to a nearby hospital, during my inpatient stay I developed pain triggered non-epileptic seizures. They completely dismissed my Dystonia and told me that it and my seizures were completely psychogenic and that the only treatment I would benefit from would be psychotherapy and that the seizures could not cause me any harm. This diagnosis was based on the fact that in my early teens I’d been physically abused, it didn’t matter in their eyes that I had sought years of counselling, and had put that section of my life far behind me. Months later I met my wonderful neurologist who confirmed my original diagnosis of Dystonia and informed me that my seizures had absolutely nothing to do with my past, but were caused by my body’s inability to cope with the significant levels of pain that I experience.

I have over the last few years been told repeatedly that my seizures cannot cause me any harm. It’s always fun to point out to the Dr at this point that this isn’t true when it happens on the stairs, or from standing, or crossing a road…the list is endless. In recent months, my POTS & EDS consultant has queried whether my seizures are in fact related to my POTS and autonomic dysfunction, but again this falls on deaf ears amongst my current local Drs.

It’s coming up to 5 years since my first run in with this particular hospital and their attitudes have not changed in the slightest. Last night I was taken by ambulance to hospital after having a seizure, I collapsed from standing and gave my head a rather good whack on the loo as I fell. Normally I wouldn’t go to hospital straight away for this, but due to hitting my head and being pregnant the hospital advised me to call an ambulance. This turned out to be a good call as halfway there I had another seizure which negatively impacted my breathing.

I’ve spent a lot of time in and out of the hospital recently due to my faulty body, so have got to know the staff in the wards relevant to me quite well. This also means I now dread every single visit. When the Dr came this morning for the ward round I felt like holding a hand up and saying chill I’ll leave now. He leaves me doubting my own sanity each time. However, I held my tongue and heard him out, just in case he’d actually done some research over night; he had not. Instead he gave me the usual lecture and then threw in that after discussing my case with a consultant, that has never met me before, they were going to refer me for psychotherapy for my seizures.

I’m beyond angry. At the back of my notes, and I inform the staff of this every time I am admitted, there is a letter from my neurologist explaining my seizures, explaining that it’s not just in my head and as clear as day states I need IV muscle relaxants and painkillers during one, and that there is no psychological deeper issue that needs dealing with. However, it’s become apparent that turning to the back of my notes and reading this letter is a far too complicated process.

Having to go through the same frustrating and time wasting process every single time I visit this hospital is exhausting and frankly disheartening.  I know that I did need to go yesterday and get checked over, but coming up against the same walls over and over again leaves me feeling like I would be better off avoiding this hospital at all costs and I can at least self-treat at home to a degree. It’s sad that 5 years on from my first encounter at this hospital, the same issue has yet to be dealt with.a560572834e8e4ffb7ca4d1e3f2e4337

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Comments on: "Ignorant Drs" (7)

  1. I’m sorry to hear of your situation(s). As a healthcare professional I feel embarassed (these days, I feel that the quality of care doctors give to their patients has fallen dramtically, usually due to ignorance, poor communication and a lack of empathy): I can only encourage you to keep going. You might think about making a complaint (because it’s not just for you that is getting treated poorly) but, as you are already aware, patient empowerment is becoming a thing of the past and you will need to be dogged!

    • Hi Peter, Thank-your for your comment. I have literally just finished composing a letter to PALs, it may not make a difference but it’s better than staying silent on the matter. I hope you are well.

  2. Karen Thompson said:

    Tell me something new!!

  3. Ha ha I have met these clowns at the same circus , my crusade has been for 62 years , if a doctor/consultant is met with the unknown , they turn their ignorance onto you , I have cervical Dystonia and no one expect my neurologist knows what I go through , I could and would write a book on the evils I encounter daily , but my own saying has become my saviour , YOU CANT PUT YOUR BRAIN IN A WHEELCHAIR, (IF YOUR NOT BLEEDING THEY DONT CARE ) they are great at writing out prescriptions before you’ve sat down for a new antidepressants, I’ve been a guinea pig for years for many a gold clock or awesome cruise a doctors been awarded to test drugs on me .
    I hear there is a great hospital near Liverpool , Walton movement disorder hospital, ask for a referral to meet someone who cares, I am going too , one day they will regret their foolish actions , I say sorry before I sit down at my GPs, one day they will apologise to me , good luck my dear I totally believe you , my honest care and love SueX

    • Susan, I’m so sorry that you have had such a long fight, but I am in awe of you for keeping going with it – I understand the struggle and that is inspirational. I really hope you get some help that makes a difference sooner rather than later

  4. I felt like i could have written this myself!! I was hospitalized in 2014 for THE SAME THING, WAS TOLD THE SAME THING!! Every time i have to go to the ER, or a new Dr, it’s the same thing! Why can’t anyone help us??? My thoughts are with you and your new baby!

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