Questionable support group (I hope this is ok to post) — Scope | Disability forum
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Questionable support group (I hope this is ok to post)

JulestheBat Member Posts: 16 Connected
First off this isnt about scope. Im talking about a Fibromyalgia charity Ive recently came across. Please bear with me as Ive found this very frustrating. 
So theres a local Fibromyalgia group near me. They posted about having a coffee morning, I did fancy going. A few days ago there was this long pretentious post about the morning. Advising people going to look for the commitee. The commitee for a coffee morning surely not? I get why people need to organise events but having the "chair person" post this really made me take a step back. So I asked the question why a commitee. And I got the reply I expected, just a load of ego driven toss. So I chalked it up to bad experience and moved on. 
I looked up the charity their connected too. They had a few people doing the great north run. They sell merch. They have information leaflets and volunteers running a benefits helpline. They are replicating some of the benefits help charitys and the info, well you can get that from the NHS and arthritis UK. Its annoying me that theres this charity that doesnt do a great deal of anything, taking up space and donations when they could be used so much more benefically by other charitys. 
I cant even get behind the charity for one of my conditions. I just find it very frustrating. And I feel a lil bit more isolated. Grrr. Can you tell Im annoyed lol? 
I really feel I want to do something that makes a difference, I want to get involved, but where do I go and how do I do it? Any ideas? 
Thank you x

" If in doubt, Freak em out" - Sharon Needles 


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    Hi @JulestheBat
    A lot of community groups and charity groups have to have a committee by law, or they choose to do so to make sure everything is done correctly, especially if money is involved.  Our tiny village nursery even needed a committee for the parents so we could choose how and when to spend funds.  

    When groups are run by volunteers they arent going to be everyones cup of tea but perhaps you could think that though it isnt for you, at least they are trying to do something to help? Something as simple as a coffee morning that connects people can be hugely important.

    If you have new ideas for the group why not have a chat with them and see if you can join forces and make a positive change?
    Senior online community officer
  • JulestheBat
    JulestheBat Member Posts: 16 Connected
    Hey thank you for the reply, its apperciated. I really didnt understand about commitees. However the lady I spoke too was clipt and rude. So I kinda dont want to be in that space now, if you get me. 
    Its frustrating because I really dont want to feel isolated, but at the same time I dont want to end up in a space where Im uncomfortable. 
    I just wish there was an alternative group at the minute, but theres not. 
    It just feels you have to like it or lump it. But the scope online communitys pretty cool. So Im grateful for that 

    " If in doubt, Freak em out" - Sharon Needles 
  • cracker
    cracker Member Posts: 324 Pioneering
    Just a though,t @JulestheBat, It might be worth it to give it another try. It sounds like a very active group, and you might find people there who treat you with respect and kindness and want your help.

    Not everyone there can be nasty. Contact someone else. Can you attend one coffee morning and feel out the atmosphere?

    You will get support here, this is a great place.
  • JulestheBat
    JulestheBat Member Posts: 16 Connected
    @cracker Thank you  :) 
    I might give it a few months. Hopefully I'll find something else in the meantime x
    " If in doubt, Freak em out" - Sharon Needles 
  • cracker
    cracker Member Posts: 324 Pioneering
    @JulestheBat, my experience in groups is that I clash with some people and often find that others in the group feel the same way about them. You sound as if you have a lot to offer, do stick with it a bit.


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