1. Alan has completed the new Pain Recovery Program. To read or share it, use this updated link: https://www.tmswiki.org/forum/painrecovery/
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Day 4 SEP DAY 4

Discussion in 'Structured Educational Program' started by james9494, May 23, 2023.

  1. james9494

    james9494 Newcomer

    Day 4 of the SEP advises me to think and post about the most disheartening thing a medical professional has ever said to me.

    Ironically, considering where I am now, that would be when the NHS told me 'it was all in my head' in 2021. I was actually rather willing to accept the diagnosis given that they had taken an MRI of my neck and said there was 'no structural reason for pain' - but the deliverance of the diagnosis was dismissive and insulting. When I asked for the specifics of the condition - how can the brain create this pain, I know its real? and why are my shoulders so wildly uneven all of a sudden? why do I walk around like the hunch back of notre-dame nowadays? All he said was that he would send me a leaflet that explains it more (he never did) and that nobody's body is perfectly symmetrical, 'we all have differences'. He gave me no formal diagnosis, and acted like I was being body dysmorphic or overly self-conscious for wondering why my body was all of a sudden a mangled shadow of what it was but a year prior.

    Furthermore, in my last follow up call with them 6 weeks later, the doctor I spoke to on the phone was dismissive and patronising, in a way that made me incredibly angry at the time. When describing pain I was sensing in my intercostals, I said 'if you know what I mean?' and she said 'no, I don't know what you mean because its in your head, it's not real' - I was shocked at the lack of empathy and the disdain with which she delivered that verdict. She then went on to almost berate me, saying 'you're a 25 year old boy, why are you just sitting around thinking about pain? you should be outside living life, swimming, running, cycling or whatever'. She said this as though this was a hobby for me, or as though I got something out of it. Like all I did was just sit around imagining, and manufacturing pain for myself. I simply woke up with back and knee pain one morning; I tried to live through it, but it got worse and worse. As it worsening, like any sane person, I couldn't just ignore it and tried literally everything to solve it, including:

    getting a new mattress
    sleeping on the floor
    getting a new, ergonomic chair and a lower desk
    cycling for 45 mins to an hour every day, regardless of weather or time I woke up
    eating 3 meals a day, rather than the 1 I had been accustomed to
    sleeping at more regular and healthy hours
    all kinds of postural workout plans and exercises from youtube
    7 months of exercises prescribed by the NHS themselves
    and, eventually, actually trying very hard to ignore the pain and accept that it was 'all in my head'

    Despite none of it working, I fought through all of the pain to continue living as regular a life as I could - I kept making music, which is my main hobby; I kept exercising as much as possible; and I kept looking for a job (I was unemployed at that time, but didn't let the pain stop me from applying for work). The implication that I was some mental weakling who was manufacturing this malaise for my own benefit was the most insulted I have ever felt by anyone in my life (other than my own father lol). It left me feeling alienated from the medical community as there wasn't really anywhere else to turn, and as though I couldn't trust anyone in these fields to actually care about my situation and earnestly work to help me. I felt I would have to somehow fix myself, and it was the loneliest and most terrified I have felt. I believe this interaction in particular, as well as the whole NHS process I went through, is a source of great frustration and anger for me as it has shattered all of my trust in this institution.
  2. Gamma

    Gamma New Member

    I’m in the same boat doctors Told me I need to do physio and all the other bull they recommend a thousand times over one doctor said I’m absolutely fine and I’m strong and this and that even though I managed to creep out a rheumatologist with some of my symptoms like my snapping wrists and grinding lower glutes popping shoulder etc lol. They can all sod off they're not going to help you in any way other than prescribing drugs and some of the worst physical therapy ever they just don’t want to admit that they don’t know what’s wrong with you because it makes them less credible.

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