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Explain myself..

Gogo21Gogo21 Posts: 34Member 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 

Replies

  • Sam_ScopeSam_Scope Posts: 7,477Administrator Scope community team
    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
  • Gogo21Gogo21 Posts: 34Member 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
  • MarkinsuttonMarkinsutton Posts: 82Member 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. 
  • Gogo21Gogo21 Posts: 34Member 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 . 
  • lillybellelillybelle Posts: 455Member Pioneering
    I actually feel too embarrassed about what I have got so I don’t tell anybody who doesn’t need to know.
    And I certainly don’t tell people that I’m on benefits at all.
    as far as people need to know my husband is the worker & I am the housewife.

  • ChrissyDaviesChrissyDavies Posts: 9Member Connected
    I'm new too and so understand, the only advice I can offer you  is be honest. 
  • Gogo21Gogo21 Posts: 34Member 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
  • Weebles1703Weebles1703 Posts: 12Member Connected
    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
  • endo64endo64 Posts: 20Member Courageous
    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. 
  • Gogo21Gogo21 Posts: 34Member 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
  • Gogo21Gogo21 Posts: 34Member 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
  • MarkinsuttonMarkinsutton Posts: 82Member 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. 
  • Gogo21Gogo21 Posts: 34Member 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
  • brian4077brian4077 Posts: 11Member 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
  • SallyMartinSallyMartin Posts: 12Member Connected
    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
  • Gogo21Gogo21 Posts: 34Member Courageous
  • SallyMartinSallyMartin Posts: 12Member Connected
    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
  • SallyMartinSallyMartin Posts: 12Member Connected
    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!
  • SallyMartinSallyMartin Posts: 12Member Connected
    And he said he gets m.s. but he really doesn't!!!
  • mikehughescqmikehughescq Posts: 3,353Member - under moderation Disability Gamechanger
    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.


  • Gogo21Gogo21 Posts: 34Member Courageous
    @susan48.. I totally get the . I'm OK.. Thing.. I do this all the time.. Theres definitely no point going further than that..
  • paula_artistpaula_artist Posts: 10Member Connected
    Hi Gogo21. Hi. I understand totally. I have a movement disorder. Sometimes I scream. Or make noises. I used to apologize all the time. A cafe owner told me off. He said doesn't matter what people think. This is me now. Finally I accept this. I've been like this for 6 years. Can't drive anymore. This is me now. It does get easier. I even had a cashier say to me. Why don't you wear a badge saying I TICK COS I CAN. 
    She said sod everyone else. 


     said:
    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 

  • paula_artistpaula_artist Posts: 10Member Connected
    Oops. Don't know how. Posted like that. Sorry Gogo21.
  • Gogo21Gogo21 Posts: 34Member Courageous
  • mikehughescqmikehughescq Posts: 3,353Member - under moderation Disability Gamechanger
    susan48 said:
    Iv given up trying to explain, it’s hard for me to understand so very much doubt people who don’t have problems could understand.

    When people ask me , how are you, I just say ok because they really aren’t interested or understand 
    Mine are phenomenally complex but it’s worth trying to understand and the explaining is really rewarding. Sure there are setbacks but on the whole it’s hugely rewarding.
  • susan48susan48 Posts: 2,187Member Disability Gamechanger
    @mikehughescq, Iv been trying to explain for so long and either it falls on deaf ears or the person isn’t interested, that’s why, in my experience, I just now say ok.
    Unless they ask further.
     I’m glad you find explaining rewarding, trying to let people know about the problems, illness etc, educating people.
    Actually Iv just wrote something important, education is so important, with MH and other invisible illnesses 
  • sandyp196sandyp196 Posts: 132Member Pioneering
    The psychiatrist printed me out a snapshot of my condition and gave me enough copies to hand out to my family.  It just gave an overview of the main points of my condition. I appreciated being able to do that. I'm not bothered if my family read the pages or not. But I gave them the choice and they can no longer use the excuse that they don't understand my behaviour or the way i live
  • endo64endo64 Posts: 20Member Courageous
    @mikehughescq i would like to spend the day with students then ask them if they found anything different about me. The feedback would be interesting. As a SEN Educational Engagement Consultant I also teach equality & diversity having studied under Professor Adam Barnard @NTU i am interested in what othrrs notice about us. As a high functioning asperger individual I find i can function at my best within  educational settings where my educational ability is the measure by which im graded not my age physical ability nor which social group i belong. Learners are interested in learning not me.
  • mikehughescqmikehughescq Posts: 3,353Member - under moderation Disability Gamechanger
    The stuff I do is to talk through my medical history and field questions. The emphasis is non-clinical. It’s about understanding the non-clinical significance of condition to a person.
  • thespicemanthespiceman Posts: 4,513Community champion Disability Gamechanger
    Hello @Gogo21 Pleased to meet you sorry to say what is happening. I think all the comments are very understanding. It is not easy none of us want to be asked or tell others who wish to know.

    Honest and openness is the solution I have found.

    I have disability you can see, yet still get the questions.

    Then have mental illness you can not . So it always annoys me that the questioning of any body about illness or disability. Acceptance is the norm, should be.

    Different with medical professionals or maybe close friends. Always be honest up front and need to discuss what is bothering you.  If they are asking you.

    Also be aware of you own frailties and state of mind.

    I am a gentleman of a certain age and time. Discussing illness and disability strange for me.  Will just get on with it. Several times now have to talk about what is bothering me. To doctors and my friend.

    Have to put my health first and think of me. So talking is important.

    Take care


  • Gogo21Gogo21 Posts: 34Member Courageous
  • whistleswhistles Posts: 1,603Member Disability Gamechanger
    Why do people feel they need to explain? 
    Do not follow me, I don't know where I am going.
  • susan48susan48 Posts: 2,187Member Disability Gamechanger
    @whistles
    I think because we feel we need to justify how we are, we don’t have to but, I did that very thing yesterday during a phone conversation.
    i couldn’t remember something and started stuttering, the person asked if I was ok and I found myself trying to explain myself instead of saying, yes or no and ending the call.
    Iv always done it so it’s a hard habit to break 
  • whistleswhistles Posts: 1,603Member Disability Gamechanger
    edited April 2018
    I am a need to know person. If you need to know you will, you have to be in my small circle of day to day friends/ community.

    I do carry medic alert stuff, the people that really need to know, will know.
    (you wouldn't believe how many drafts and rewrites I have done since!!!) 
    It's bullet points with a left out bit that might make the person think I have three heads or MH issues. Not ashamed of my anxiety. But it comes down to that having to explain things and feeling like a twit and embarrassed that causes me problems!! 

    You need the 'I get claustrophobic about that' and the reply to be ok that's fine.
    Instead the 'I get claustrophobic  about that' is met with what, really. So, and our worse.
    Do not follow me, I don't know where I am going.
  • fishingmumfishingmum Posts: 562Member Pioneering
    I used to feel that way about my son, and try to explain his condition or behaviour and it really is met with a cross between idiocy and lack of care. I realised the best thing was for me to be honest. for example on the 4th speech and language therapist (3 previously had sent him off for hearing tests as they thought he was deaf due to him completely ignoring them all test came back showing he had normal hearing) I stated we had went through 3 previous tests and he is fine, she was saying no due to him not even blinking an eye when she clapped her hands

     It was that point that made me change the way in which I dealt with it. I stated to her, If I were you I would take it personally, he does not like you. When she attempted to talk me I pointed out that considering she deals with children of all abilities she should be more than aware of how autistic children can be with strangers, if she is unaware and does not understand time for retraining.

    I now just he is autistic when he is having a bad time, a meltdown, or not coping. If those people do not understand that is not my nor my sons problem, if they want to learn there are plenty of free resources out there for them to do so. I just do no let them have rent free space in my head any longer. Those who are worth it will understand and take time to understand, those who don't are not worth your time. Life is too short to be unhappy.
    life is too short to let others make you miserable.
  • Gogo21Gogo21 Posts: 34Member Courageous
    All the answers have gave me alot to think about ... It's kinda made me realise how much explaining I do do.. Maybe its time to care less about peoples judgement .. Maybe I need to stop justifying my existence so much.. X be honest if I need to be with people who need to know but otherwise.. Why worry . Thank you so much for everyones help 
  • fishingmumfishingmum Posts: 562Member Pioneering
    I hope you are ok @Gogo21 I think it is human nature to need to fit in and be part of the group and we always look to explain ourselves to those we care for and we want to care for us. Sometimes you need to start your own group or find one that you fit into with explanations needing to be said.
    The shortest sentence in English is " I am." that is all the explanation you need to justify your existance.
    life is too short to let others make you miserable.
  • Gogo21Gogo21 Posts: 34Member Courageous
    Thanks you I'm ok... @fishingmum .. I think I'm just learning to properly accept my conditions.. I'm just learning I need to be my own advocate.. X
  • stephenjohnstephenjohn Posts: 32Member Connected
          Oh how I wish that health professionals would read notes and talk to each other ,it infuriates me when I have to continually explain why we are at a specific place ,we often get asked “why are you here” because my doctor referred me .......read the notes ......my wife has non epileptic seazure syndrone and can collapse at any time ,out cold but because she doesn’t look ill she gets treated like a social leper..........how often do you get that look from people that says ......yea ok ! 
  • whistleswhistles Posts: 1,603Member Disability Gamechanger
    People on here don't care about your conditions and are not judging you, so why let people into your life that you have to keep explaining things to. 
    Life is a struggle already without other people's baggage. 

    I have a common condition which presents itself in a rare way. I had five years of the wrong meds, treatment. I was mistaken many a time for showing a variety of social unacceptable behaviours and treated as such by those responding.
    Sometimes the ambulance crew itches their head, not great, but READ the alert info its there for you guys because apparently you know where to look and we hope you do. Not always the case but that's another post!
    Do not follow me, I don't know where I am going.
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