Viewing 8 reply threads
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    • #17253
      Leah Leilani
      Keymaster

      Disabled is not a bad word and neither is it a bad thing to be disabled but, for decades people have believed and internalized the myth that it is. I have experienced this ableistic perspective first hand, even in places where I should feel the most accepted such as at church or at a hospital clinic. The one thing that I think is more disturbing than having someone pray for my healing without permission, is when I get asked the question “what’s wrong with you?” As if I need fixing. Have you had interactions with people who thought you were a broken record because of your disability?

    • #17255
      Larry
      Participant

      There is a certain stigma though. My partner at times thinks I am just being lazy. That if I tried harder that everything would be much better.

    • #17258
      Leah Leilani
      Keymaster

      Larry, have you been able to talk to them about this and how that’s not the case at all as well as how it makes you feel when they make this remark? I find that sitting down with someone and explaining the situation and my emotions is far better than tolerating something.

      • #17262
        Larry
        Participant

        I have talked to them. Does not appear to make any difference.

    • #17281
      Leah Leilani
      Keymaster

      Then it seems to me like the only other option is to shut them down if they make this comment again. Let them know that it’s your body and that Laziness is clearly not the problem and that you don’t wish to discuss the matter further. Stand your ground.

    • #17284
      Tracy Myall
      Participant

      I sometimes don’t think people understand that I am disabled because I am still walking without the aid of a cane or walker. They don’t understand how fatigued I get just by doing normal things or walking too much. It’s really hard to explain to people. I just don’t think they get it because they don’t see a visible disability.

      • #17291
        Leah Leilani
        Keymaster

        Tracy, have you heard of The Spoon Theory before? If not, I suggest looking it up either on Google or Youtube. It simplifies the concept of energy and fatigue in a way that people understand. I use it all the time when meeting new people. I know the struggle of not only being judged because you look fine but also trying to get people to grasp what energy is how it helps the body function. I hope this has been helpful.

        • #17307
          Tracy Myall
          Participant

          No I haven’t heard of it Lea. I will look it up. Thank you

    • #17287
      Karl Evans
      Participant

      Disability is not something that should place a value or grade on a person’s life. It is just like racism, or other such crap. I have dozens of genes and stuff which I have no control over, yet there are many people who refuse to accept me. That is especially true in church, in politics, in romance, in industry. My MD is no more or less damaging to my reality than the color of my skin, or the fact that my dilated cardiomyopathy might kill me before this email spreads around the globe.  But, I guess every person has a right to be stupid.

      • #17292
        Leah Leilani
        Keymaster

        Karl, I have a hard time agreeing that people have a right to be stupid these days. With knowledge at our fingertips, it’s so easy to put some time and effort into being educated on societal matters. I think the problem is that a lot of people aren’t open minded enough to do that. It’s sad really.

    • #17302
      Chris Damico
      Participant

      For me personally, it is a bad thing to be disabled. I mean, you all know what happens to us as we grow older, and I’m certainly not looking forward to it. Why would I want to lose control of my body and almost everything I enjoy doing? Its a part of me, and I’m not ashamed of it, but I’m not thankful I have it. A lot of things are parts of me, and not all of them have to be good. I’m not a worse person for having it, but I would love nothing more than to be normal, and not have to deal with it. Its just an aspect of life, but most of life is pretty tragic.

      • #17320
        Leah Leilani
        Keymaster

        Chris, I completely respect and empathize with your thoughts. Life with a disability can suck sometimes. We’re constantly fighting for a place in this world and there are many aspects of having a disability that just aren’t fair. For me, being proud of my disability doesn’t mean that I’m happy to be disabled, but to acknowledge the good things is has brought me and the person I have grown to be because of it. I like hearing everyone’s opinion on this matter because we all have different stories and experiences. And each on of our opinions is valid and should be heard.

    • #17475
      Denis
      Participant

      I suppose I’m lucky in the sense that I was older when I was diagnosed with MD1, I had a good 50/60 years of normal life TG. I see it as more of an inconvenience now, but like to stay positive and just get on with it. Yes, my wife who is a wonderful person thinks I’m lazy too but that is part of the illness. Not having the muscle power is restrictive both mentally as well as physical, and yes we all have a certain amount of pride. I think hope and love are our best bet.

    • #17505
      Leah Leilani
      Keymaster

      Denise, my mom is similar to you in regards to the age of her onset. although she passed down MD to me, she didn’t have lasting symptoms until around the age of 58. There are times when she misses her old, physically active life, but she pushes through and has a positive attitude. She and I are both people who like to be active and doing something so we find it difficult when our bodies force us to rest and have to remind ourselves that sometimes being “lazy” is necessary.

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