Feeling lost, looking for a community — Scope | Disability forum
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Feeling lost, looking for a community

SparkleAndShine
SparkleAndShine Community member Posts: 4 Connected
edited July 2023 in Coffee lounge
Hi all. Thank you for letting me join this community. 

I’ve been disabled for 24 years after becoming chronically ill with ME at the age of 9. I have struggled to find a real community my whole life. I work 30 hours a week with a condition where only 25% of sufferers can work at all and probably less than 10% can work as much as I do. I’ve been told by fellow sufferers that I’m a bad example of our condition to the outside world and I’m harming other sufferers. I equally stand out amongst able bodied people. I have a blue badge and struggle to walk far, rely on Wiltshire Farm Foods meals to be able to feed myself and can’t take part in most leisure activities. Despite that I do live a happy life with a wonderful supportive partner and family. It would just be nice to have some friends and a sense of community too. 

Thank you for reading. I hope you’re all doing as well as possible and having a nice weekend ☺️

Comments

  • surfygoose
    surfygoose Community member Posts: 426 Pioneering
    Welcome to the group and I’m sorry that fellow sufferers have given you a hard time. They have no right to dictate whether they think you should work or not. It sounds more like it makes them feel guilty about the fact they aren’t working (of course they don’t need to feel guilty for not working), but nor should they be making you feel guilty for working. It seems to be an issue inside them and not you. You keep being yourself and doing what is right for you. You aren’t harming other sufferers. I guess they feel like someone might tell them they aren’t all that disabled because you have the same thing and you work, but again that isn’t for you to feel bad about, it’s not your fault. If someone is judging the other sufferers like that then they are ignorant that illnesses affect people in different ways or perhaps you really need the money and are having to struggle in or perhaps you love working and it helps your health to do it because it makes you mentally stronger. People need to kind their own business!

    I'm glad you’ve got a lovely supportive partner and family. That makes a lot of difference and it’s them that are more important and who you should think about, not the silly people saying things to you.

    That must have been really tough getting so ill with ME at such a young age. I guess it’s hard to even remember much of what it was like before being unwell.

    There are plenty of nice people to talk to here and make friends with. It’s a good community.

    Do you have any pets / hobbies / favourite tv shows? I don’t have any pets but I love all animals. I’ve been watching ‘The Orville’ and ‘A small light’ on Disney+. I like playing my PlayStation, I got Paw Patrol Mighty Pups Save Adventure Bay game on the PlayStation at the moment. Also I like jigsaw puzzles 100 piece ones, usually Disney ones. I enjoy reading.
  • Hannah_Scope
    Hannah_Scope Posts: 7,316 Disability Gamechanger
    edited July 2023
    Hello @SparkleAndShine

    Welcome to the community! :) How are you keeping today?

    I hope you join in with us over in the Coffee Lounge. It's where we play games, have debates, discussions and generally get to know each other :) 

    I am also glad to hear that you have a supportive partner and family around you. I feel those members of the community are not what the community is about. I really hope we here in Scope's Online Community can be a support and friendship for you <3
    Hannah - She / Her

    Online Community Coordinator @ Scope

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