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Thread: Muscular Dystropohy Friend is in Denial

  1. #1

    Unhappy Muscular Dystropohy Friend is in Denial

    I have a friend who is suffering from muscular dystrophy. He was diagnosed 5 years ago and since then, his condition has gone much worse. He still has hands function, but his legs are giving away.

    The problem is that he seems to be having a very hard time accepting his situation. He can hardly move away from his bed, but still haven't even got a wheelchair for himself.

    He has practically locked himself in his home. Doesn't go outside at all & when he does go out, he tries to go out like normal people, which always ends up badly. He feels demoralized and then won't step out for months.

    I really don't know what to do. I keep telling him to at least get a wheelchair for himself, but he always just clamps up when I utter the word "wheelchair".

    Its heartbreaking to see my friend wither away like this. Any help on how can I counsel him?

  2. #2
    Senior Member
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    That is a tough situation. Remind him that HE is the one making himself more disabled now by his refusal to use a wheelchair. Let him know that we are out here in the hundreds of thousands, shopping, having dinner, going to shows, all of what constitutes living, even if that is done from a sitting position. If it is massive depression he may need to see a counselor or hook up with some other folks who have MD. I am SCI so I have no personal knowledge, but my guess is they have online services and forums too.

  3. #3
    Eileen,

    I have been trying to convince him to come on at least this forum and see how people cope with things and still lead a normal life. I am also on wheelchair and I get very inspired by the posts in this forum.

    About wheelchair, he says that if I don't walk, I am going to lose the function in my legs. Again, I just want to tell him, "Dear, you have already lost your legs...." But I don't.... He has come to a situation that if he so much as gets half an inch difference in the floor height, he collapses like a building because his hands are not strong enough to break his fall.

    I feel like he is slowly just digging himself into a hole. He only talks about his past days. Has left with no hobbies, friends, work or anything to keep him occupied whole day.

    What to do? How do you convince a person to adapt to a disabled lifestyle who doesn't want to accept that he is disabled? Whenever I try to convince him to do things that make life easier for him, he just tells me, "oh you don't understand my problem"

    When the truth is, I am the only one in his life who understands what he is going through.

  4. #4
    Is your friend seeing a doctor for depression? This would be a natural occurence with situations such as this. The best you can do is be a consistent and supportive friend and keep showing that life can go on and be enjoyed even with the changes.
    1FineSpineRN

  5. #5
    No he's not seeing anyone for depression. I am afraid to even utter the word "Therapist" to him because he would definitely think that i am calling him mentally unstable.

    Not sure what to do.

  6. #6
    Senior Member lynnifer's Avatar
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    He's just stuck in the denial stage. Sooner or later, he'll have no choice but to come out of it.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #7
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    I think the world still has so many negative messages about disabilities and the equipment we use to compensate for what we once had. I remember the first time that someone referred to me as "confined to a wheelchair" and I thought to myself that they had it exactly backwards. Without the chair my life would be one of isolation and zero quality, but with it I am able to accomplish most of what I need to, and even sometimes most of what I want to. I don't know if your friend would react badly to knowing you wrote here or not, but if you think it is worth a shot you might want to share that you did, that you are willing to have him read the responses, and that you did so out of genuine caring. You are clearly a wonderful friend, the sort most of us wish we had more of in our lives. His anger/denial may be clouding his judgement on that in addition to wheelchair use, but it doesn't make it any less true. I live near a salt marsh that I absolutely love. It has a paved path through some of it, although it is long and circular. With the chair I am able to visit a place that brings me much peace. I watch the cycles of life, the migratory patterns of shorelife, and have a very large blue heron that I have named Harriet that I check on periodically. That sort of thing is my interest, and I am sure he has others, but the point is that the chair is a liberator, not the thing that confines me. The disability is the confining event, the chair is what sets me free.

  8. #8
    Moderator jody's Avatar
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    what about a scooter, or trike? I use my trike like a wheelchair to get around town.

    I will fight the chair much longer this way. its no good for shops and such, but it gets me out more. they have a wheelchair that looks like a little moter trike. id totally love one of those.

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