Making friends with long term health conditions — Scope | Disability forum
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Making friends with long term health conditions

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Empowerment1981
Empowerment1981 Community member Posts: 26 Connected
Just wondered if people struggle to make long lasting friendships with disabilities and long term health conditions?  I have fibromyalgia and complex Ptsd and unable to get out at all now being in chronic pain for 5 years.     As soon as I say I have fibromyalgia and I'm housebound it's like people don't want to know.   Usually get the pity response from able bodied people and then never hear from them again.   It'd like able bodied people see a disability or long term health condition and make a snap judgement.     It's really getting me down because I want to form friendships but feel like I don't belong at all.

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  • martymart
    martymart Community member Posts: 21 Courageous
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    I too have difficulties with maintaining friendships due to onset of hearing loss in both ears, PTSD, social anxiety, tinnitus and Hypercusis. I have a partner and two friends whom I call my family -brother and sister, and their children nephew’s- as they are there to support me and help when the chips are down. I have one friend who will speak via text as she lives in another part of the city. I am unable to work so I8 months in no one has tried to contact me , but am thinking their loss not mine and shows their true colours at last. 
    As mentioned earlier the people who matter are there for me and me for them too and I value this immensely, as been at rock bottom, going through counselling and losing your way knowing that people who matter and care are there. 
  • Empowerment1981
    Empowerment1981 Community member Posts: 26 Connected
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    I'm sorry your struggling as well.  Definitely agree people show their true colours when the chips are down.    I'm glad u have a few people who are like your chosen family.   Think we all need safe secure attachments and a sense of belonging.       
  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
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    Hi @Empowerment1981, I'm sorry to hear about your struggles. I've had friends with fibromyalgia and I know how painful and tiring it is.

    In my own opinion, I think many people want to fix issues. If they realise it's not "fixable" as in, it won't stop existing/be cured, they sort of shrug and move on. They seem to very much miss that they can help, even  just by being there. It can be very hard, I hope you find the community here more understanding.
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
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  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,619 Disability Gamechanger
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    From a practical perspective, if you can't go out, that really limits the opportunities for socialising. 

    I no longer have any 'real life' friends left due to being housebound and drifting apart.  In the past, I could at least meet up with people locally to share some of the experience, even though I couldn't fully share experiences (particularly regarding food & drink). 

    Now I have nothing left to offer anyone.  Friendships need to be a 'give & take' scenario.  If people are having to give more than they get in return, they're likely see it as more of a burden than a positive relationship.
  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
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    It might be because I've been online since I was very young. I was lucky in that my mum worked in a computer repair shop in the 90s so I got my first PC before I was 10 (the repair guy liked me and scrabbled parts lying around the shop to make it for me). But I've always got a lot out of online friendships. Sure I enjoy seeing people in person, but I'm very at home socialising online. I find it far less anxiety-inducing is one major aspect. I was agoraphobic for a while earlier in my life, so I know how hard it can be to get out. But I like to think, and hope, that places like this community help fill a gap in peoples lives.
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
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    Opinions are my own, such as mashed potato being bad.
  • Franabelle
    Franabelle Community member Posts: 4 Listener
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    I think there's two issues usually. A lot of people are fixers and when faced with a problem they can't fix they turn to platitudes or just think there's no helping and then their interest fades. The other thing is that a lot of people have so many of their own issues, disabilities or family or financial that becoming friends with someone who has a lot of stuff themselves can be daunting and not appealing. I have had to stop being friends with people because they had their own problems and I couldn't be there for them and the couldn't be there for me. It was that simple. 
  • Empowerment1981
    Empowerment1981 Community member Posts: 26 Connected
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    I think there's two issues usually. A lot of people are fixers and when faced with a problem they can't fix they turn to platitudes or just think there's no helping and then their interest fades. The other thing is that a lot of people have so many of their own issues, disabilities or family or financial that becoming friends with someone who has a lot of stuff themselves can be daunting and not appealing. I have had to stop being friends with people because they had their own problems and I couldn't be there for them and the couldn't be there for me. It Franabelle said:
    I think there's two issues usually. A lot of people are fixers and when faced with a problem they can't fix they turn to platitudes or just think there's no helping and then their interest fades. The other thing is that a lot of people have so many of their own issues, disabilities or family or financial that becoming friends with someone who has a lot of stuff themselves can be daunting and not appealing. I have had to stop being friends with people because they had their own problems and I couldn't be there for them and the couldn't be there for me. It was that simple. 
    Hi @Empowerment1981, I'm sorry to hear about your struggles. I've had friends with fibromyalgia and I know how painful and tiring it is.

    In my own opinion, I think many people want to fix issues. If they realise it's not "fixable" as in, it won't stop existing/be cured, they sort of shrug and move on. They seem to very much miss that they can help, even  just by being there. It can be very hard, I hope you find the community here more understanding.
    Yeah find that a lot they are desperate to fix . I had a conversation with someone recently who said has your fibromyalgia gone yet like it was an illness like a cold or something.    Yeah they do move on sharpish when they feel like they can't fix 
  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
    edited September 2023
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    I think that's one of the things people without long-term disabilities struggle with. When they get sick, even something like the flu or bad pnuemonia, they know that everything is gonna go back to being not-sick. I refuse to use the word "normal" there because it's an entirely subjective word, everyone has their own normal. For some of us normal is being in pain or fatigued.

    So they always see sickness as something temporary, something to get over.

    Just like we're really bad at imagining infinity, we're also really bad at imagining things that are permanent. We only know what it feels like when it's already happening to us.
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

    Concerned about another member's safety or wellbeing? Flag your concerns with us. 
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    Opinions are my own, such as mashed potato being bad.
  • Empowerment1981
    Empowerment1981 Community member Posts: 26 Connected
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    I think that's one of the things people without long-term disabilities struggle with. When they get sick, even something like the flu or bad pnuemonia, they know that everything is gonna go back to being not-sick. I refuse to use the word "normal" there because it's an entirely subjective word, everyone has their own normal. For some of us normal is being in pain or fatigued.

    So they always see sickness as something temporary, something to get over.

    Just like we're really bad at imagining infinity, we're also really bad at imagining things that are permanent. We only know what it feels like when it's already happening to us.
  • Empowerment1981
    Empowerment1981 Community member Posts: 26 Connected
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    I think that's one of the things people without long-term disabilities struggle with. When they get sick, even something like the flu or bad pnuemonia, they know that everything is gonna go back to being not-sick. I refuse to use the word "normal" there because it's an entirely subjective word, everyone has their own normal. For some of us normal is being in pain or fatigued.

    So they always see sickness as something temporary, something to get over.

    Just like we're really bad at imagining infinity, we're also really bad at imagining things that are permanent. We only know what it feels like when it's already happening to us.

    People who are well and healthy have no idea and don't how lucky they are to have their health. 

    Health is wealth.

    I think because I was unwell as a kid with epilepsy I always life can turn on a dime and health can go do hill quickly.   


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