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Bed Side Manners or Just Common Sense

By April 25, 2016June 28th, 2017Disability, Lifestyle

Raya Al-Jadir


I have heard from disabled friends and acquaintances some quite alarming stories about their various encounters with medical professions and although I empathised greatly with them I can’t claim to have fully understood it.

Their stories ranged from a doctor telling a wheelchair user ‘please take a seat’ to a more serious comment by a specialist doctor to a friend of mine that her illness is in fact in her head and it is likely to stem from depression brought by the disability! Dismissing completely that medical results do show irregularity in my friend’s health. Disability is a problematic concept for most people but it seems to be more so for medical professions as they react to disabled patients in two classic ways; either attributing any symptoms/pain to the actual disability or the complete opposite as they dismiss the disability and treat the patient without considering the implication of the condition.

Over the years I have had my fair share of ‘awkward’ moments with doctors but I always overlooked them as I assumed they don’t deal with many disabled people or I put it as a simple mistake that anyone can make. Yet I often struggled with doctors who referred to my disability condition as a ‘disease’, it used to hurt and irritate me because what I have is not an illness; it is not contagious and certainly can’t be cured. It is just a condition that I was born with just like there are people who are born blond or tall or of a certain shape. Again I never complained or brought the attention of the doctor to his wrong choice of words.

My attitude changed completely last month when I finally decided to take action after experiencing two incidents in a space of 5 days at my GP practice. I have been a patient at this practice since I was a child so I was very well known there, so when I got ill with a bad cough I phoned the practice and spoke to the on call doctor. Explaining that I am a ventilator user, have respiratory failure and heart murmur plus my actual disability I asked him for a home visit as both my heart and chest are hurting, I also emphasised that I hardly ever ask for a home visit and would usually come out regardless of the pain I am in or the weather we are experiencing but in this instance I am very weak and need to be checked. To my great shock he refused claiming that they listened to my chest four days ago and it was clear and that I should just carry on with the medication. I was left speechless and had no idea what to do, all I knew was I am feeling not only ill but very vulnerable too.

I thought about calling an ambulance but I was not sick enough to be admitted into hospital plus the mere thought of sitting in casualty for hours to be examined by a doctor that had no clue of your medical history or disability filled me with fear as memories came flooding back when 9 years ago hospital stuff made a mistake by giving me too much Oxygen causing my respiratory system to collapse and become reliant/addicted to my ventilator 24/7. Eventually I called my physiotherapist who came to see me and listened to my chest, which made me feel safe again.

After few days I developed another infection and again phoned the GP practice and this time a different doctor challenged my weight. As she informed me that she will prescribe a certain medicine I advised her that I take a child dose due to my weight, she did not respond so I reiterated that my weight is 26 KG, the doctor replied ‘is that your age’ I said no my weight to which she claimed ‘it is impossible’! I was somewhat lost I did not know how to convince her that this is my actual weight, so I politely insisted that this is my actual weight but again she dismissed me and said you can’t be. I thought the best thing is to inform her that I am disabled so I told her I have Muscular Dystrophy to which there was a complete silence, I figured out she had no idea what MD is and just repeated I am disabled, finally she seemed convinced as she exclaimed ‘oh you are tiny’!

I am not sure what angered me more that fact that the doctor did not check my medical record before calling me or the fact that she did not believe me when I told her how much I weight. It is then that I decided to complain about both encounters not because I want these individuals punished but so that they learn from their mistakes and learn some basic disability awareness training to prevent others from undergoing similar experience to me.

Join the discussion One Comment

  • Del Tashlin says:

    Thank you for writing this. I struggle a lot when I am (not) seen by doctors, specialists, and other health professionals, either come in not having read my record, and/or trusting me when I am super specific as to why I’m there but they decide to talk about something else.

    my worst experience with a local Cardiologist who is part of a highly regarded practice. I have congestive heart failure, currently in stage four (of five). I also had a progession that was variant–a large number of CHF patients experience left-sided failure. In fact, I spent 8 months going from specialist to specialist trying to find was causing my symptoms, but because the first cardio I saw did an ultrasound and decided whatever was not CHF.

    He only looked at the left side, because the majority of left vs. right is that what he based his decision on.

    I got a little sidetracked there. I rolled into this new cardio doctor’s office and he shook my hand. As he sat down the first thing he said was “I am not convinced you have heart failure.” I swallowed my rage and I asked him why had he come to that decision. He leanedback in his chair and proceeded to be raded me about my weight (I am obese, morbidly so).

    His conclusion was that he refused to treat me unless I had weightloss surgery. Regardless of the fact that 2 weight loss specialists decided that that I was not a candidate because the increased risk of complications, especially so due to the CHF. He then moved to the fact I use a chair-speculating that if I lost weight and work on my leg muscles I could ditch my chair.

    If he had read my file, he’d have seen that I have congenital lypodystrophy; the main symptom is having little to no fat on the extremities, but very defined muscle. (my partner has affectionally called me “Chicken legs”, and others “an egg on sticks”) Some develop pain and weakness as we age.

    I asked him if this stipulation was really an ultimatum, and he nodded. I left his office, telling him that giving a patient an ultimatum before you’ve read their file and/or discussing it with the patient first. He followed me to reception. I was trying to cancel the other appointment and, in the waiting room, continued his tirade about my weight. I reported this to the state licencenture as a clear violation of HIPPA-for starters.

    I then went on several websites and apps that list both the consumer rating and a comment section. It may not look like an awful part, but many people put doctors, especially specialists, on a pedestal and then feel afraid, anxious, or unethical. But if no one talks about it, it will never change.

    Again, thanks for having the courage to write this essay. I wonder if the Kevin MD blog would reblog it–it is primarily read by doctors but he publishes essays written by patients. Just a thought.

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