Hi, my name is GGGSE10! I can’t believe we still have discrimination in the 21st century! — Scope | Disability forum
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Hi, my name is GGGSE10! I can’t believe we still have discrimination in the 21st century!

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GGGSE10
GGGSE10 Community member Posts: 3 Listener
Hi all.  How are you doing?  

I have MS that was gradually progressing slowly until lockdown when it sped up for some reason (medics don’t seem to believe me! If I ever get to see them!…) and has continued in that way until I cant now really stand or walk at all and in a wheelchair.  What’s next - bedbound?  Super dupa!

So I’ve gone from a fitness teacher and salsa dancer in my time off where a big part of my life and my identity was teaching fitness then after diagnosis slowed it down to yoga which I learnt to love and now this is what I get:

  • People staring at me so I feel like screaming I’m not an Fing freak!
  • I have kept up my fitness as much as I can although I can’t teach any more, but I’m getting so bad I struggle to do 6 minutes on a cross trainer. And it hurts and leaves me feeling so drained I”m finished for the day mostly.
  • People literally jump out of my path, honestly!, and sometimes with both feet - again, honestly!, when I’m out on my mobility scooter and they made grand sweeping gestures without asking me, or the opposite and are oblivious and let doors go in my face, or a tiny minority are actually rude and aggressive and blatantly discriminatory (blows my mind, never realised people like this still exist!!)
  • Touch me and do things without asking
  • Tell me if I think positively I will get better
  • Tell me they know i will get better if I go to Lourdes and pray, go to Australia and eat dingbat poop, buy the umpteenth diet book and follow it or some follow some random guy’s strange seaweed or cabbage or astral health routine, just believ!, let some stranger pray for me or inject me with their potion, watch something on YouTube and follow whatever they say etc, etc,….
  • And if any more well intentioned people tell me to think positive and it will all be OK I will scream!….and slap them
  • My (so called) family do sweet FA and then tell me they would love to help me but can’t!
  • My sis hoovers up my social life and gets together with my old friends, and never invites me along - nice.
  • I’m home alone and dropped by most people and the isolation and boredom is excruciating
  • I can see the pity in some people’s eyes
  • Some people talk to me in that naff cheery way that they talk to all disabled people like I should be all happy and cheery despite their bad luck 

I don’t;t want to hear your response if you want to tell me this sounds negative or give me advice.  I don’t need it.  I just need truthfulness and understanding and I do appreciate lots of things but that’s another subject that I’ll do another time,

Over and out

GGGSE10

Comments

  • Beaver79
    Beaver79 Community member, Community Co-Production Group, Scope Member Posts: 20,210 Disability Gamechanger
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    Hi @GGGSE10 Welcome to the Community. My cousin was diagnosed with Severe Pulmonary Hypertension when she was 23 years old and had to have a wheel chair not because she could not walk but because she could not walk and breathe.
     She found as you are that friends disappear when you are no longer able to do the things you used to do. She also found that if she was in a shop people would reach over her head to get things. Other times they would run past her to get in front of her it made her very cross.
     She did have a couple of very good friends that stood by her and would do things she was able to do. She had to give up work she was a teacher. So her and her mum came up with a plan of what she could do now and never look at what she did before. She did an Open University degree which she loved and still went to the theatre if she had to go in a wheelchair and take oxygen she did.  People would stare and she hated it. In a restaurant one woman sat and stared at her until I told her to stop. Sometimes she would stare back but why should she have had to. She was also asked by her Consultant is she would talk to newly diagnosed patients on the phone which she did. She did arts and crafts and played the violin. She had to adjust and she did given time, but she did find it hard. She did have Counselling which helped her comes to terms with her new life.   
    I hope this helps. Take care.
  • GGGSE10
    GGGSE10 Community member Posts: 3 Listener
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    Thanks Beaver, that’s good to hear. Thanks for giving your cousin’s experiences.  Glad she found a way forward and what she did sounds amazing!  Also so wonderful that you are obvs there for her to 
  • Albus_Scope
    Albus_Scope Posts: 4,180 Scope online community team
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    Hey there @GGGSE10 and welcome to the community.

    I won't try and give you advice, as I think dingbat poop is a bit out of my range of expertise, but I just wanted to say thank you for sharing your story and if you need to chat, we're all here to listen without judgement.  I think a lot of us can read your post and do a knowing nod at some of those reactions you've mentioned. 
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • JessieJ
    JessieJ Community member Posts: 500 Pioneering
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    I understand & know some of how you feel. Going from fit abled to disabled is extremely hard to handle. Before my accident, I was very outgoing, sporty & was in a theatrical group. After, that all went, along with most friends as they couldn't accept I was now different & I couldn't do the things I used to do. That made me very insular, but just had to get on in my own, new way. 

    Moved & met new people that didn't know how I was before, that made it easier, they accepted me & my chair. Lived in France for a while & the friends I made there are wonderful & I hear from them regularly still, they are the best. 

    I don't have friends around where I live now & little chance of having any, as I don't go or do anything to meet anyone. Plus, the shyness I used to quash is to the fore now & the thought of going into a room of strangers, joining a club or something, there is no way I could do that, not a chance.

    As for out & about, yep, some look at you as if you've been beamed down from some unknown planet, some are rude. patronising or look through you. Then you have those, head down on their phone. I stop & let them walk into me, as I'm not prepared to do a slalom along the street, as there are so many. 

    Thankfully, there are lots that make up for those though, that are thoughtful & helpful in a non patronising way. 

    Kids make me laugh, as they're the best of all. They're friendly, accepting & ask anything straight away, like why are you in a chair. Hopefully, they will grow to be accepting, decent adults & go some way in changing how disabled are treated in the future.

Brightness

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