Feel like they don't listen to me — Scope | Disability forum
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Feel like they don't listen to me

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Twistedchamp
Twistedchamp Community member Posts: 1 Listener
edited October 2023 in Start here and say hello!
I'm 45, level2 fusion L4/S1. SI Joint disease. Cervical spondylosis. Endometriosis. Fibromyalgia. I'm having problems with getting anyone professionally to listen to me. I've been pulled from pillar to post since 2002 with departments blaming each other for my symptoms instead of solving the issues. I'm at the lowest I've ever been. I feel like I'm just another stat number to them & they don't actually care. They promise me the world and never follow through with what they say. What they say verbally isn't what they put in my notes. I feel like I'm going crazy. Pain is over the 10/10 scale but 'ive got to wait' I cannot afford to go private unless I have over 22k I priced it up.i love our NHS but I've lost my trust in them and these people want to just use me as a pin cushion and keep doing 'lets try this' to see what happens. But they've been trying the same thing over and over. I have to be careful what I say because I don't want to end up with no help if that makes sense? I've lost my job again. It's ruining my marriage because I can't do normal things. My friends don't invite me anywhere anymore. Because if I smile it means I'm better.(if that makes sense?) I love my family & friends but they don't truly understand. Anyone else feel the same? 
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Comments

  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
    edited October 2023
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    Hi @Twistedchamp, first of all welcome to our community. I hope this place will be a source of friendship and support for you. 

    I understand some of what you are going through. After I was diagnosed with Crohn's I was very poorly for many years. I just smiled and told everyone I was fine. I couldn't go out and eventually stopped getting invites. I fell into a deep depression and that really strained my relationship at the time, to the point that it did indeed break. I did get better though, I'm now in a much better place, it was difficult but I managed to weather the storm long enough until I did get help. 

    I'm going to send you an email if that's alright, just keep an eye out for it :)
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

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  • Jasper2011
    Jasper2011 Community member Posts: 3 Listener
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    Hi, I can totally relate to how you feel, I first started to become ill at 39 and over the years I've been passed on to many departments of our wonderful NHS who have all been brilliant in their own specialist area but it's been really difficult anyone pulling it all together to see the bigger picture. 

    My chronic pain was initially put down to my severe depression, then when I started to feel a little bit better in my head and the pain persisted, I was referred to physio, MSK, pain management, pain specialist, following MRI and various scans it took until I was 50 to be told I have cervical spondylosis, widespread ostoathritas, degenerative spine disease. I have many other health conditions but over the years I've pushed away friends and family as it's so difficult explaining yourself away as the pain on your face comes across to others as being miserable and you never seem to be able to win.

    I'm on a lot of medication for other illnesses but to manage my pain a little I'm on naproxen, gabapentin, capsaicin gel and opioid patches which helps a little but I dread to think of the pain I'd be in if I didn't take the above.

    I am slowly starting to have a bit of a life again and I have to use walking sticks to get around and I've started to take a "don't care what people think attitude" they can take me how I am or not at all! 

    It's taken me a long long time to start to feel a bit more positive after getting the right diagnosis, pain medication, support and financial help which all helps to start feeling like yourself again.

    I do hope things start to work out for you and you get the right support and help you need

Brightness

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