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Explain myself..

Gogo21
Gogo21 Member Posts: 41 Courageous
edited April 2018 in Coffee lounge
Hiya everyone.. I'm new.. I'm not sure if I'm posting in the place.. But was just wondering how people cope with having to explain your illness to people . I sometimes feel like giving people printed hand outs of my conditions and how they affect ... It drives me insane the judgement I receive . Especially from my close friend who are supposed to be there.. I'm not moaning just looking for genuine advice.. Thank you 
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Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @Gogo21
    I know how you feel, it can be very tiring to feel you have to explain yourself and your impairment to others!

    I hope some other members will be along soon to talk about how they deal with it.
    Scope
    Senior online community officer
  • Gogo21
    Gogo21 Member Posts: 41 Courageous
    Thanks.. Probably was just having a bad day.. But it literally exhausting having to explain myself all the time.. Its actually making me antisocial.. Lol..x
  • Markinsutton
    Markinsutton Member Posts: 83 Pioneering
    I have tried giving people print outs and sometimes people don't read them, I have found having to explain myself in bits on pieces because if I overload people with everything they glaze over and I can tell they are not really taking it in. One thing I have thought about is doing a video but Think you still have the same problem. Sadly if you have something that needs explaining then it really needs the other person to look themselves. For me even common issues like my dyspraxia that are easy researched people don't want to so I just ignore them in that case. 
  • Gogo21
    Gogo21 Member Posts: 41 Courageous
    Thanks for replying.. It's actually making me feel lonely.. I am quite isolated because of the conditions affect my mobility and theirs no one around during the day.. So I rely on my family and friends   So when my close friends make me feel like I have to justify myself.. Its hard to cope . 
  • ChrissyDavies
    ChrissyDavies Member Posts: 9 Connected
    I'm new too and so understand, the only advice I can offer you  is be honest. 
  • Gogo21
    Gogo21 Member Posts: 41 Courageous
    I think it's because my conditions are invisible.. I use crutches.. But I'm saving  to get a wheelchair which will help.. Getting the right wheelchair for my conditions is complicated(eds) as I can't self propelled but electric are to heavy .. So I was explaining this to my friend and she was like.. Why cant you use shop mobility.. You wouldnt be able to go out without help anyway .. And basically the conversation went that I was over thinking things and could probably use any wheelchair available.. It's like I've not thought about it.. Or that I don't know what I'm doing . It kinda hurts my feelings.. Probably sounds pathetic of me though.. X
  • Weebles1703
    Weebles1703 Member Posts: 11 Courageous
    I really understand where you're coming from. It is exhausting having to explain stuff. Would it be worth doing a group email or similar, explaining how you feel, what you'd like them to understand about you impairments and their impact on you? I hope you find a solution and let us know if it works out xxx
    Ps I find the support of my disabled friends extremely valuable, as they just understand & don't get offended when I cancel plans etc. Maybe you could find local people with similar health issues x
  • endo64
    endo64 Member Posts: 20 Pioneering
    I gave up trying to explain to others as u say i also feel that others have little understanding. Or little want and at its worst individuals know the extreme effects. Im also socially isolated but this is because i fear everything most of the time. If im asked to run a course im great as i hide behind my training persona but im not good at selling myself and fear applications for training positions as i have to explain that my asd is stable when training. Like the chap that stutters when talking yet when singing his stutter is gone. So i sit here waiting for life to start. 
  • Gogo21
    Gogo21 Member Posts: 41 Courageous
    Thanks..I might Try email thing.. X
    I hoping to join a couple of groups in my local community.. But I'm mobility and fatigue is restricting a wee bit at moment . But I'm working on it ... Because I need the interaction of other . X
  • Gogo21
    Gogo21 Member Posts: 41 Courageous
    Endo64.. I hear you . It horrible being isolated.. I'm trying to find away round it.. But Its really hard.. As my mental health has taking a bit of a dip since I can't get out the same ... But you just keep hoping you will come across something or someone who gets it.. X
  • Markinsutton
    Markinsutton Member Posts: 83 Pioneering
    the hidden disabilities are the hardest ones to explain. I totally get where you are coming from and wish there was an easy answer for you. even my complex care plan I still find myself having to explain and people get lazy over time so reminding them is just goes part and parcel of having a disability. I hope you get some comfort knowing you are not alone and we are all here if there is something we can help in more detail. for example I joined a small group with people who have same disabilities as me so we are able to talk about it and for everything else this community helps as there are things i read here I would never thought of asking. 
  • Gogo21
    Gogo21 Member Posts: 41 Courageous
    Hiya Markinsutton..thank you . It does help to know I'm not alone.. That I can reach out and ask people who understand.. I will have a look and see if there is a group I can join.. Because I think I need it at moment.. X
  • brian4077
    brian4077 Member Posts: 11 Listener
    Hi y'all 
    I find it easier if you keep your condition simple to explain and point out that you have good days and bad days
    And that you just take it one day at a time
    I find they dont really want to know all the details so why tell em
  • SallyMartin
    SallyMartin Member Posts: 14 Courageous
    Hello all, am new here too! I was diagnosed with m.s. in 2013, 6 weeks after taking voluntary redundancy from a good, globally travelled job. 4 months in hospital, a chair, then a stick but no more! In fact I recently ran, walked and wheelchairs the Bristol half marathon for the charity m.s research. Lost my husband through it, can't work, yet! Etc etc! But hello all! Xx
  • Gogo21
    Gogo21 Member Posts: 41 Courageous
  • SallyMartin
    SallyMartin Member Posts: 14 Courageous
    So you can all answer my question, my mother has taken all my bank cards cos she believes I can't look after my finances in order to keep my boys and my house! Aaarrrggghhh! But I guess, do-able! But boo, and now before am allowed to try get a new job, I have to see the charity Headstart! So again aaarrrggghhh! What do you think? Xx
  • SallyMartin
    SallyMartin Member Posts: 14 Courageous
    Sorry add to that, the husband left and we are mid divorce, but fine, we have both moved on etc etc! So I am left with 2 young boys (10&8) as well as m.s . to deal with!
  • SallyMartin
    SallyMartin Member Posts: 14 Courageous
    And he said he gets m.s. but he really doesn't!!!
  • mikehughescq
    mikehughescq Posts: 8,838 Connected
    I had eye surgery 7 years ago which didn’t impact my vision but which was life changing. I also take part in a lot of eye research which is a great way to become an expert patient. I talk to 2nd year medical students in Manchester, which has enabled me to work through lots of interesting and long-standing related issues and I’m involved with various things around accessibility and equalities. All of my stuff is invisible but the more you talk the more refined what you say becomes and the easier it gets. Although we all shy away from it to an extent there are lots if ways of making the invisible visible. I can now quickly articulate to others what I could barely articulate to myself for decades. 

    That said, many people either don’t want to know or don’t really comprehend. Not a lot you can do about that.


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