Remaining politically neutral during General Election 2024


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Portrayal and perception of disability

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  • bam
    bam Community member Posts: 326 Pioneering
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    @milo I had to get my car towed into the mechanics yesterday to get some work done on it. I had a most enlightening conversation with the tow truck driver on the way and the mechanics. It's a little funny whenever I'm talking to somebody and we talk about me having MS people always want to tell me they know somebody with them that and they know what it is like to have a disease that affects your life on a daily basis. when I have these conversations with people I discover  pretty quickly they really have no idea what it's like. I was driving to the mechanics with a tow truck driver and we had this conversation about a mess. He told me he once had somebody in his life that had MS and he knew what I going through. During my conversation with him I felt his empathy. This man who didn't have that much education completely understood what it was like to live life with the MS. He really really understood and I very seldom meet people in public who have any clue what MS is like. It was really a great feeling to actually meet somebody who really really knew what it was like. People tell me all the time they know what it's like to have MS but hey have no idea but this man really did. He was so considerate and kind. He knew what I had problems doing because of my MS and he tried to help me so much. He tried to help me in a way that didn't make me feel like he felt sorry for me or I like was "special".
  • Katymary321
    Katymary321 Community member Posts: 12 Courageous
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    I can't empathise but I have a friend with MS who is in her early 40s. Her daughter is in the same class as mine (they are only 9). My friend has only told a handful of people about her condition as she just wants to be seen as one of the mums and not pitied or whispered about which I can totally understand. Her parents are massively helpful and I sometimes offer to help out as i would offer to any other of my friends but don't overdo it. She knows I'm there if she needs me. Not being in a wheelchair has helped her keep her condition secret. We never talk about ms unless she mentions it. I often talk to her about my son, however! I'm a heart on my sleeve girl that's how I deal with life's trials.....
  • bam
    bam Community member Posts: 326 Pioneering
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    @Katymary321 how are you doing? I don't think I've ever said hello to you before. My family has done almost nothing for me. Nobody in my family has even bothered to find out what MS  really is. I wish I never told anybody about my MS. I have problems walking sometime so it's kinda obvious now there's something wrong with me. I've only had to use a wheelchair a couple of times. I'm kind of happy about that because my sister has stolen my wheelchair eight months ago and refuses to return it. It sounds like your friend is doing pretty good. I'm happy for her.it's really important for people who have MS to keep active and keep their legs strong
  • milo
    milo Community member Posts: 129 Pioneering
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    @katymary321,  @bam you both raise some good points in the last few posts. There is a distinct difference in someone having empathy and having sympathy for you. I'm absolutely certain that people say that they are sorry simply because they don't know what else to say. I can only truly speak for myself when I say that I have so much going on in my life and so much more to me than a disability  that I don't have room for sympathy.  Hope it doesn't sound awful but I don't need sympathy and I certainly don't ask for it. 
  • Katymary321
    Katymary321 Community member Posts: 12 Courageous
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    Hello!@bam and hello again @milo Good to "meet" you too. Have you both been a members of this forum for a long time? I get what you're saying. Part of the problem for me is that I used to tell people the truth very often when they asked(we've had a bad night son wet the bed again 6th night in a row and he was in bed with me again/no son's behaviour is causing real problems/mother is in late stages of Huntingtons so no day is a good day (and she and my dad live with us)/husband had a major hypo last night (late diagnosis type 1 diabetes) thought I'd lost him. I'm starting to smile as I write this as none of it is funny but it is my life and I wouldn't change it!

    People kind of look at me and I know what they are going to say...."You've got a lot on your plate!" They then don't know what to say so rather than telling the truth (especially at work) I try to keep conversation light. If I really need to talk I've one or two really close friends I can offload onto. Otherwise I'm in danger of talking about my own life all the time and that would be really boring.Unlike you@milo I don't have much else to talk about. That's not entirely true as I have a lovely family and we are close (but I always need to ask them to look after my son, interestingly, yet they will often offer to have my daughter for a few hours!) If I have a funny story to tell I will mention it (like the time when my 11 year old son had a temper tantrum in the pub standing at the bar on holiday recently because he wanted coca cola but he'd already had a pint so I said no more. My daughter and I both realised at the same time that his shorts had fallen down and were round his ankles taking the nappy with them. Everyone had gone quiet and they were all either staring at the scene or trying to avert their eyes. My daughter and i just got the giggles and couldnt stop. My son stopped screaming at this point, diverted by the laughter and let me sort his trousers out. You couldn't make it up. Life is so funny. Moments earlier i had been in tears on the bar staff as i thought I'd lost him. They were so long bringing his ice cream dessert that he'd decided to go get it himself....think they were relieved when we finally left....

    Ive digressed (again) Other people have their own problems and they don't need to hear my troubles. Hope I'm making sense. It's 2.50 am and I need to go back to sleep! Got the dreaded DLA form to finish tomorrow. Wish me luck I'm only on page 22. 18 pages to go. Wish I could learn to be more concise! Good night.
  • bam
    bam Community member Posts: 326 Pioneering
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    There are so many times I'm laying in my bed at 2:30 a.m. thinking. I wanted to respond to this post but I have MS and I just had a pretty good fall. It really hurts and I know it will hurt even more over the next few days. This stuff always seems to happen when I'm at the end of my pain medication prescription
  • Katymary321
    Katymary321 Community member Posts: 12 Courageous
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    @bam It's not good that you are in such bad pain. (I wanted to say "I'm sorry" just then but in the light of our previous chats didn't think it such a good idea!) Is there anyone there who can help you? I hope you don't think I am being trivial about disability as it is something you wouldn't wish on anyone especially where pain is involved. Thinking of you and hope you manage to get some sleep x
  • bam
    bam Community member Posts: 326 Pioneering
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    @Katymary321 I understand what you're talking about. With MS I'm kind of used to falling. I just know over the next few days because of past experiences I'm going to be in a lot of pain. I'm going to be really stiff. I just took my car into the repair shop yesterday so I'm glad this didn't happen yesterday. Thank you for your support. Just hurts a little. I wish I could have seen a video of the fall because it seemed kind of funny. I was falling backwards and I was reaching out with my hands just trying to reach out trying to grab the door in front of me. I just kept trying to grab it. I was so close. It wasn't really that bad of a fall. I kind of fell back kind of into a wall and then fell down on the floor. I just know because my MS I'm going to be really stiff and sore tomorrow
  • Katymary321
    Katymary321 Community member Posts: 12 Courageous
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    Oh heck. Sounds like you really did it in style. My mum always used to swear by Voltarol gel for pain relief after falls. Used to get through loads of tubes of the stuff. The meds you use are probably more effective anyway. Hope the pain is not as bad as it has been on previous occasions. Right. I really am going to sleep now! 
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