How do you explain chronic illness to friends? — Scope | Disability forum
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How do you explain chronic illness to friends?

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alice_rose
alice_rose Scope Member Posts: 4 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi, my names Alice  I'm 21, I was diagnosed with fibromialgia last year and under investigation for other syndromes. I was wondering if anyone had any good experiences of explaining their invisible illness when they first meet someone. I have been trying to not bring it up unless it's relevant to what we're talking about  or if I have to cancel plans. People don't seem to want to be friends with the girl who says she's in constant pain and flakes on plans. I don't think people believe me. Having lived with my brother the last few months and him seeing how I live day to day, he understands better, but when people just see the you on a good day when you're able to be out i don't think they believe how much it fluctuates. Anyone got a good experience in telling someone about their chronic illness? 
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  • Wini1960
    Wini1960 Community member Posts: 130 Pioneering
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    alice_rose Hi in my experience true friends are very hard to find. However, there is one or two friends you can tell that it doesn't faze them. I have two good friends who have seen me at my worse and my best and still willing to be my friend. So the person who doesn't judge but can show empathy in your dark times, who can look beyond the mess they are true friends. I suffer with mobility problems and depression and a long term condition. I'm doing well at the moment. Thank.Got. So it's a case of filtering the bad eggs. Dont be too quick to tell anybody your story because you can get hurt pretty bad. Allow them to talk and you will see where their heart lies. If it's all about themselves they will not be right for you. I hope this helps. 
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  • alice_rose
    alice_rose Scope Member Posts: 4 Listener
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    Thank you, I'm greatful for your experience, it's helpful to think about not letting your self be hurt by people that don't care, and finding people that do. 
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  • Wini1960
    Wini1960 Community member Posts: 130 Pioneering
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    alice_rose your welcome?
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hi @alice_rose - Welcome to the community. I came across this a while ago, but it's the best explanation I've come across, i.e. the Spoon Theory. So here it is, with apologies if you've already seen it. Please see: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/    :)

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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi @alice_rose Welcome to the community, like said before having a disability certainly shows you who your true friends are I find one by one they drift away when you cant do the things you used to do until you are left with just a few.

    My disability is visible and it still doesn't make any difference but I just cherish the few friends I have and know they don't judge me and include me where they can but it is hard to come to grips with, It takes time to adjust to the disability.

    I joined some chat rooms first then you can make friends virtually without having to meet  
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Hi @alice_rose, great to have you with us! I'm sorry your friends haven't been very understanding.

    I too was going to recommend the Spoon Theory as it's something I used with people while at university.

    Also looking at disability bloggers might be helpful as they share their own experiences. :) 
    Scope

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