Monday, 12 May 2014

Pain: Common Misunderstandings

Talking about pain isn’t easy, but it’s even harder when the phrases used mean different things to the patient and the medical staff trying to help them.

I've experienced  plenty of misunderstandings when trying to discuss my pain and medical conditions with doctors and physiotherapists – and seen it happening to many others too.

My first memory of total bewilderment when it came to communicating about pain was when I was 10. I was shown a piece of paper with the numbers 10 -1 down the left hand side, and 1 - 10 down the middle. She pointed to the top of the page and said "this is no pain" and pointed to the bottom and said "This is the most pain you can imagine." And asked which number my pain was. I sat there is shy silence unable to work out whether 10 was high or low - it was at the top AND the bottom! I chose 3. What I meant was "not screaming, but bad." But we had misunderstood - so the nurse said 'That's quite good then' and walked away.

I didn't correct her because I was 10. And I didn't want to complain. Or be told I was attention seeking or making it up.

And today, as a confident young woman, I still run into trouble when talking about pain. It has taken a lot of time, effort and error for me to learn that what phrases mean to me isn't necessarily what they mean to someone else. Often on facebook I see comments from patients really upset at something a doctor has said and part of me wants to shout at the doctor for saying such a stupid thing - because I know how it feels. But part of me wants to shout at the patient that they’ve misunderstood!

When a doctor says “I'd like to refer you for psychological help” did they mean they think you are mad - or are they trying to say they recognise how tough things are because of your pain and want to support you?

It’s a recipe for disaster.

So I turned to my stickmen and, in association with Pain UK, created the leaflet “Pain: Common misunderstandings between patients and medical staff”. The end result is a simple, straight talking, A4 double sided leaflet which puts opposing meanings of commonly used phrases into one place and will hopefully give everyone who reads it a better chance of communicating effectively about pain.

 £0.10 per leaflet sold through will be donated to Pain UK (registered charity in England and Wales, no 1145561) to support their vital work, supporting small charities dealing with pain-causing conditions, and working to make treating and managing long term pain a priority for government and the NHS. 

Chris Huges, Trustee for Pain UK says “Pain is rarely talked about and we are always seeking ways of helping people explain and discuss their pain. Hannah's approach is simple but effective, and manages to be very accessible with out being patronising or confrontational, while spelling out the difficulty of discussing pain from both sides of the fence.”

The leaflet will be launched on Friday 16th May, but is available for advance order now from


  1. After being diagnosed with a chronic pain disorder in my right leg I started the search for some rehabilitation in order to help me cope with the pain and get some tips and tricks to make life easier. Part of my search was to better my driving of my wheelchair.
    The first one did offer an interesting rehabilitation plan but it was totally based on lower back pain and not on upper leg. So I was not admitted.
    The second one started promising. A good plan, 6 weeks intens training, the first three weeks even staying overnight in the centre.
    Before I was admitted I had to get thru the admission procedure. On the day I had to be there early and my wife was to accompany me because she would be questioned as well.
    We were questioned together but also alone. I was examined by a fysiotherapist as the mainstay of the diagnoses was already done by the hospital that referred me. And by an occupational therapist.
    All in all it took the better part of a day.
    After a few weeks I got the results. Admission was denied because I didn’t suffer but we were offered consultation with a sexuoligist because that was seen as a problem. Oke it is not optimal but no problem to us.
    I was livid. Didn’t suffer, even with strong medication my pain is appr. a steady six with peaks to 8 or 9 out of ten.
    My wife was livid at me and at the people at the centre because I also have Asperger. She was angry at me because I hadn’t been clear enough about my level of pain. And the shrink was clearly not able to see thru the Asperger syndrome.
    At first we cut of all communications but at a laterstage we requested a meeting with the head of the admission commite.
    Still angry we started the conversation but it soon became clear that we both used a different kind of suffering. What they meant was not the physical suffering from the pain but the mental suffering from being in a wheelchair. I didn’t care being in a wheelchair. Oke it is harder getting around but it in the end it is a tool to me. A tool for getting around while walking was limited to some 50 meters.
    After searching for some 4 years I finally got the rehabilitation that I was searching for. It was offered to me out of the blue by one of my physiotherapists, because she saw my struggling for progression and not getting there. I’m stil in the wheelchair but I am now able to walk at least 300 to 1000 meters with a cain (depending on whether it’s a bad or a good day). More then enough for some small errands.
    Oke it is a long story but here too there was confusion about the definition of words.

  2. I know this barrier for discussing pain well. In my case I say, do you know what it feels like to dislocate your kneecap? If they say no, I then try down a step, have you sprained your ankle really badly? If yes, and that's their 10 I say right my pain level is about 14!

    Pain cannot be quantified unless you are using an equal scale. The day that the medical profession can quantitatively measure pain will be the greatest advance in medicine ever!


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