The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Friends just don’t get it!!!!!

Discussion in 'Lifestyle Management' started by red*dragonfly, Sep 13, 2015.

  1. red*dragonfly

    red*dragonfly

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    I'm not sure if I’m looking for advice, just need to vent, or just need write this down so that I get it out of my head. But any advice would be welcome.


    I don't have a large circle of friends, but the few I have just don't seem to get that I'm unwell. Over the past 5 years haven’t seen each other very often, I usually try to get in touch when I'm feeling ok, but dew to working different shifts we don't get together often, and when plans are made they are usually lose plans and end up not happening (due to friend having other commitments and cancelling).


    Recently they want to get together more often, unfortunately I've been going though a bad spell, and can't commit to plans as I don't know if I will be well enough on the day. I tell them to make the plans without me and I'll let them know on the the day if I'm coming along. This usually results in loads of text during the run up asking if i'm going, and a lot of 'o come on'. (I don't like being nagged even when i'm feeling ok). I keep being made to feel like i'm being a party pooper.


    To top it off I'm partly sighted and they don't seem to get that this creates problems too. They want to go to bingo, and I struggle with keeping up with the callers as I cant find the number fast enough, and I have to think fast at work (checkout in a buzzy shop) so after work i'm mentally drained and my brain has had enough. They keep telling me that it's 'not about if you good at it, it's about having a fun night out', but its not fun it's just exhausting.


    I really don't know what to do any more, I just feel lousy every time I see them now.


    Ok, vent over for now, thanks for reading.
     
    belize44, alkt, ahmo and 2 others like this.
  2. Effi

    Effi Senior Member

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    hi @red*dragonfly , welcome to PR :)

    having this illness is rough... Most people don't get what it's like, no matter how many times we try to explain. I can totally imagine how frustrating it is for you when they make you feel like you're being a party pooper when all your body is screaming for after a draining day at work is peace and quiet. You probably wish you could be having 'fun' but your body just isn't up to it. ugh. :bang-head::depressed::ill:

    I was thinking... if you like to hang out with your friends sometimes, maybe you could think of an activity that is doable for you, and then kind of take the lead, in order to make sure you actually end up in a situation that is enjoyable for you (and them)? I'm not saying organizing sth where you should be doing all the work - more like an activity/place of your choice where you can go to all together that is more laid-back than bingo (cause omg bingo sounds super draining!!) and you could even leave early if you feel like you need to rest. I'm not sure if that would be possible though, as you say that you don't always know in advance if you'll be having an ok day... It's just a thought. :)

    Hang in there! Sending you a hug: :hug:
     
    belize44, alkt, Mary and 3 others like this.
  3. L'engle

    L'engle moogle

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    Sounds like your friends are kind of immature, unfortunately. You might want to see if you can meet another chronically ill friend in your area through a support group or something. Not saying you should dump all your current friends and start fresh, but having an ally that understands your challenges can make social life a lot easier.
     
    alkt and ahmo like this.
  4. alex3619

    alex3619 Senior Member

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    I think this is where so many do not get it. Its fun, so you must be having fun. You are too exhausted to have fun is just alien to them. My own friends have failed to understand this as well, at least some of the time.
     
    L'engle, Valentijn and alkt like this.
  5. red*dragonfly

    red*dragonfly

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    Thanks for the replies, I've been having a bad couple of weeks and just needed to vent. They'er not always as bad as the impression I might have given earlier. I Think the problem is that they only see me when i'm well, they don't see me when i'm curled up in bed after a 4 hour shift.

    thanks for the advice. I sometime go to the cinema with one of them and I can handle that, and we use to go out for food sometimes but that never happens any more, I can't think of anything else we could do right now, but i'll try thinking of something.

    Unfortunately i've never been very good at making friend, the friends I have have been my friends since school. I think this is part of the problem, they remember me as I was when I was well, they don't know the current version of me.
     
    alkt, Mary and Effi like this.

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