Hi

Badbunny
Badbunny Community Member Posts: 5 Connected
edited October 2021 in Rare, invisible, & undiagnosed conditions
I have ME, Fibromyalgia and mild arthritis and asthma and allergies.  I look 'normal' but am in pain, become easily fatigued and going out and eating out can be problematic due to my allergies.  Even friends don't understand my needs properly and I get frustrated at being invited out to events which are unsuitable for my disabilities and find people often won't make allowances, e.g will choose a coffee shop in the city centre which is further than I can walk from a car park.

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  • Liam_Alumni
    Liam_Alumni Scope alumni Posts: 1,087 Empowering
    Hi @Badbunny,

    Welcome to Scope's online community! It's great to have you here.

    There's plenty of groups and discussions which you can get involved with, whether it be just for a chat, or to ask for some advice and support. Do feel free to get involved in one of our conversations!

    If you have any questions, then please do get in touch!
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @Badbunny Welcome to the community, do you really share with your friends just how difficult you find things?  I have an invisible disability and I think I am guilty of not always being totally open with my needs.  It's not easy to admit that you need a little more help sometimes but I have found that when I explain "I can't do X if you are going to Y because of Z" that people are often surprised.

    I think because people may see me out and about, they dont understand all of my needs, yes I may have been out on Saturday but X,Y and Z needed to happen to get there, and A, B and C will happen as a consequence.

    Have you heard of the Spoon Theory? It can be really useful to explain chronic illness and fatigue to others.


  • Topkitten
    Topkitten Community Member Posts: 1,273 Trailblazing
    Welcome badbunny. Hopefully you can gain helpful insights here which may help you to deal with the type of issues we all face.

    TK
  • Nystagmite
    Nystagmite Community Member Posts: 595 Empowering
    Do you ever suggest places to go that are accessible?

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