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Old 08-07-2012, 08:10 AM   #1
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Unhappy Embarrassed by my disability

Hi, I'm 28 and have FSHD, I was diagnosed when I was 20.

in the past couple of years i've grown increasingly depressed about my desease and i hate saying this but i actually feel ashamed of it. I look at myself and cant stand the way i look and am embarrassed at the way i walk.
I feel completely hideous.

I know i sound utterly shallow and horrible, but i'm finding it so hard to come to terms with when i used to have so much more confidence. it's not about how pretty i look, its genuinly that i hate looking abnormal, People treat me so differently, and men just simply are not interested.

my friends don't get my condition, let alone understand how it makes me feel and i can't find anything online that seems to admit that people can be ashamed of their illness. I can't be the only one? does anyone else have these feelings?

please dont think i have these views towards others, i really don't. i just hate the effect it's having on me and dont know what to do

 
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Old 08-08-2012, 12:32 AM   #2
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Re: Embarrassed by my disability

Hi

You are not the only one. I hate my body and try not to look at myself in the mirror. Clothes look horrible on me and my body is “weird” for other people.

I do not want to walk in front of people because I have to hold on to someone else and the fear of falling is always there so I feel like a freak

I’m also ashamed at the way I look and I also feel hideous

If I didn’t have an attractive face I would’ve given up long ago. Most of the time I’m in a wheelchair so looking weird isn’t the problem except the fact that I hate being in the chair

Sometimes I accept it and move on but other times I get angry at the way I look. I hate the way I look and being single is my fate

I’m embarrassed when my boys bring friends over and I’m standing in the kitchen. Even the way I stand looks horrible never mind walking to my chair and having to “fall down” to sit.

My sister had family photos taken and told the photographer not to let my body show in the photos. I received the photos via mail to choose them and I hated every single one of them. She showed my body in the pics and do not want any of them. I asked her to Photoshop me but that couldn’t be done. Needless to say I didn’t develop any of the photos

You are not alone in feeling the way you feel and not being pessimistic I will never accept the fact for having a deformed body

I do apologize for being so negative but I cannot really say anything but the truth of my feelings.

All I can do for myself is not to look into a mirror at my body, put make-up on and feel better about the way I look above my shoulders

Mandy

 
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Old 08-10-2012, 08:09 AM   #3
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Re: Embarrassed by my disability

I know how you feel, I'm embarrassed about the way I walk. How I stick my butt up in the air when I push myself off from a table to get up from a chair. I mostly stay at home because I'm scared of going out in public and falling or being put in an awkward position.

I hate even going to the doctor because I have to stand the whole time while I wait because I can't get up from a chair without a table directly in front of me.

I have a boyfriend who I live with, he loves me and understands my condition and limitations. He's not embarrassed by me but I know I put him in awkward positions sometimes. I feel ashamed going around his family because I feel like they believe he can do so much better than a disabled 22 year old fat girl.
If it weren't for his love and acceptance of me I think I would be far worse in my depression then I am now.

I get sad spells, I think about the fact that I will never have children because, face it I can barley carry a gallon of milk, I could never take care of a baby or run after a toddler. It makes me sad that I won't ever be a mother, that's something I've wanted since I was a child.


But don't even think you are alone, I'm also ashamed of what my body does or doesn't do. But we've got to live with it.

 
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Old 08-10-2012, 06:16 PM   #4
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Re: Embarrassed by my disability

yep can relate to all of you.......and like selmaG said we have to live with it........
Heidi x

 
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Old 08-12-2012, 02:12 AM   #5
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Re: Embarrassed by my disability

Selma
I think you are being so unfair to yourself. I was diagnosed at the age of 19 and had my first child at 22. I didn’t care what anyone had to say as it was my decision

There are difficulties. Even a healthy person has to deal with being a mom in different ways. Our way is to adjust our environment to be able to deal with having a baby

I had my second boy at the age of 24. It was difficult but I had the support of my husband. I also had a live in maid that helped me when I needed her.

I wasn’t going to give up having kids and I didn’t. I got divorced at the age of 28 when my youngest was only 3. I had to deal with things myself then but again I made it work for me.

Little things like picking up a baby. When they born it is so easy because they are so light and that bonding at that stage is wonderful. Then you start adjusting. When they get older you cannot lift them up anymore but then you change your environment and make the crib low enough for you to be able to work with them from a sitting position.

At the toddler stage you adjust yet again. I had tiles in my house so I used a tying chair and wheeled myself all over the place to play with them. Kids adjust to your environment. Believe me I know.

Things like taking them to daycare you arrange with the person at the daycare to fetch them from your car. Later when they at school going age you do the same. You will be amazed how “easy” it will become to be a mom with a disability.

Kids adjust to fit in with your life and your restrictions that later it becomes second nature to them

Sometimes I do get depressed feeling that I’m not a good enough mom because I am so restricted. Today they 18 and 16 year old teenagers and I have to deal with the normal teenage moods and they love me crooked body and all.

I need help getting up and yes I do get that “sigh” from them but I get the same reaction when they have to do their chores and take out the trash.

They support me and encourage me to go out and have fun. They help me in and out the car when we go places without feeling embarrassed to be seen with me.

I’m the one that judges me over and over again and you are now doing the same

You can be a mom and stop telling yourself you cannot. Believe in yourself.

 
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Old 08-12-2012, 02:24 AM   #6
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Re: Embarrassed by my disability

Selma
I think you are being so unfair to yourself. I was diagnosed at the age of 19 and had my first child at 22. I didn’t care what anyone had to say as it was my decision

There are difficulties. Even a healthy person has to deal with being a mom in different ways. Our way is to adjust our environment to be able to deal with having a baby

I had my second boy at the age of 24. It was difficult but I had the support of my husband. I also had a live in maid that helped me when I needed her.

I wasn’t going to give up having kids and I didn’t. I got divorced at the age of 28 when my youngest was only 3. I had to deal with things myself then but again I made it work for me.

Little things like picking up a baby. When they born it is so easy because they are so light and that bonding at that stage is wonderful. Then you start adjusting. When they get older you cannot lift them up anymore but then you change your environment and make the crib low enough for you to be able to work with them from a sitting position.

At the toddler stage you adjust yet again. I had tiles in my house so I used a tying chair and wheeled myself all over the place to play with them. Kids adjust to your environment. Believe me I know.

Things like taking them to daycare you arrange with the person at the daycare to fetch them from your car. Later when they at school going age you do the same. You will be amazed how “easy” it will become to be a mom with a disability.

Kids adjust to fit in with your life and your restrictions that later it becomes second nature to them

Sometimes I do get depressed feeling that I’m not a good enough mom because I am so restricted. Today they 18 and 16 year old teenagers and I have to deal with the normal teenage moods and they love me crooked body and all.

I need help getting up and yes I do get that “sigh” from them but I get the same reaction when they have to do their chores and take out the trash.

They support me and encourage me to go out and have fun. They help me in and out the car when we go places without feeling embarrassed to be seen with me.

I’m the one that judges me over and over again and you are now doing the same

You can be a mom and stop telling yourself you cannot. Believe in yourself.

 
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Old 03-12-2013, 04:47 PM   #7
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Re: Embarrassed by my disability

TellLatte, My husband has FSHD. I think you might be judging yourself too harshly and assuming that others are seeing the negatives you see. Try to realize that others might see your positives and not be noticing your differences at all.

Also many people hate things about their looks and problems even if they don't have MD. You might be thinking someone is judging you but in fact they are caught up in their own self criticizing feeling embarrassed themselves about something.

 
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Old 03-12-2013, 04:49 PM   #8
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Re: Embarrassed by my disability

TellLatte, My husband has FSHD. I think you might be judging yourself too harshly and assuming that others are seeing the negatives you see. Try to realize that others might see your positives and not be noticing your differences at all.

Also many people hate things about their looks and problems even if they don't have MD. You might be thinking someone is judging you but in fact they are caught up in their own self criticizing feeling embarrassed themselves about something.

 
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Old 03-23-2013, 07:11 PM   #9
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Re: Embarrassed by my disability

You all are beautiful, amazing human beings. I admire you for your courage and your honesty.

This thread caught my eye; I do not have muscular dystrophy, but I too have body issues stemming from other conditions and ailments.

You aren't alone in your feelings, and you are gorgeous!

 
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Old 04-16-2013, 03:09 AM   #10
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Re: Embarrassed by my disability

hello darl, i know how you feel. i was always stared at an picked on at school because of the way i was. it was so depressing i went to doctors for help. i was taken into councilling and im glad i was they are some one who i can still talk to today.

if you can get somone to take you to doctors and they will give you advice, talking to some one you trust you find your self feeling better but you dont need to worry because everything you tell your doctors is strictly confidential, they can help you.

dont worry about men, you will soon find someone who will worship the ground you walk on.

 
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Old 04-17-2014, 01:58 PM   #11
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Re: Embarrassed by my disability

I'm so sorry you feel this way but unfortunately is all too common. I have Myotonic Dystrophy and always embarrased when I shake someones hand and have a hard time letting go. I also walk weird and have a hard time getting up.

I sometimes worry that my wife will leave me because she is very active and craves adventure but I can do those things that she enjoys anymore. I fear if we ever divorced I would be destined to live alone. I wish I had something positive to say but the truth is it's hard.

 
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Old 05-26-2014, 11:55 PM   #12
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Re: Embarrassed by my disability

Hi,
This is my first time seeking out support and help from others who know. See, I was raised more by my mother who doesn't have any ailment that limit her. My sister and I both have FSHLG Muscular Dystrophy. I'm 25 and she's 20. She takes hers in proud stride and at one point I used to walk proudly. Lately though, I've been becoming anxious every time it crosses my mind. I have been noting small changes and things are just not as easy as they used to seem.

The only embarrassment I feel from my disability is the form my body takes because of it. I wear braces and I'm so self conscious about them that I can't fully enjoy wearing shorts or capris comfortably outside my own home without having this nagging feeling in the back of my head that people are watching me. Burning holes into me. And it freaks me out, so I don't go out in public much. I hate my smile. I hate that I can't function like a well oiled individual and I hate that I get envious of able bodied people.

I'm more terrified by it. Doctors predict that I will be in a wheelchair around the time I turn 28. I like to be as independent as I possibly can, but I get super frustrated with myself when I can't do the stuff I used to do so easily. I get stuck on couches if they are low to the ground and I need help getting up off the couch. If I fall, it's either show my butt to the whole world or pray to god my boyfriend is with me when I fall because he gets me to my feet so easily and it doesn't look weird. I still have enough strength to push up from a crouching position but even that is going fast. 3 of my fingers on my left hand are starting to curl naturally and I can't fathom how to make them work anymore.

I'm scared of it. Because I have watched my aunt care for my grandmother. I see how my stepmom, 8 year brother and 7 year old sister take care of my dad. I don't want to be that person. I don't want to be that dependent. It seems prideful and maybe it is...but when you know your ability to do much is running on a meter, you want as much of it as you can get. I don't want to put my boyfriend through that. I don't want to be a burden to anyone. Ever. Unfortunately for me, asking for help doesn't come easy to me. Not because I have pride but because I had it hammered into my head that asking for help gets me yelled at. Like I shouldn't even bother. I'm a grown woman and I can do it myself.

I can't be the only one who is terrified of what is enviable. And because of this, I can't open up about it. I hate going to my doctor about it, even though he SPECIALIZES in it. I hate walking infront of people because I really don't want to talk about it. (I got a horrible nickname from middle school "crazy legs") and it was very hurtful.

I do have some amazing friends and only a few are really supporting about it. Who keep me in mind and work out plans to include me in the fun. Like getting into water. That's super hard to do by yourself...even worse when you're trying to get OUT of the water.

This post is everywhere. I'm sorry. This is my first time, I'm overwhelmed and can't place all I want to say in order.

 
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Old 05-27-2014, 01:21 AM   #13
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Re: Embarrassed by my disability

Hi

I know how you feel to ask for help. I hate to ask anyone to help me as I feel I am going to lose my independence.

I try and still do everything myself even though I am dependent on a wheelchair.

I can still get up but only in my bathroom. The proportion or layout of the bathroom is in such a way that I can push myself up.

If I have to use a bathroom that isn’t actually the way my bathroom layout is there is no way I can get up no matter how hard I try

I changed my shower and placed railing around the inside of the shower to hold onto.

Sometimes I get “stuck” on the toilet as lifting myself isn’t working. Last Saturday I just could not get up.

After an hour struggle I phoned my dad to come and help me.

He tried for half an hour and still could not get me into a standing position. He started to get angry because I insisted that I will get up even if I have to try for another hour.

He could not take it anymore and left the house.

I needed to get into the shower and then my mom started with me telling me that I can use a bucket and just wash myself. I refused

I insisted I will and can get up and will try until I do so. Then my mom started getting angry with me

I asked my mom to go and see if my dad is ok and I tried again to get up. I DID!

I told my mom to leave and that I am ok. I’ve never seen my parent so angry with me.

I wish that they can understand that I cannot give up.

That means I lose my independence, the one thing that still gives me hope and not place me into depression

Last edited by mandy37; 05-27-2014 at 01:23 AM. Reason: Spacing

 
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