Invisible Disability - to

[Guest guest]

, the feelings that you're having are certainly not

unusual. I'll never forget when I first started to use my cane

in public. Most people assumed that I broke my leg or

something like that. I'd get a cheerful, " What happened to

you? " I politely explained that I have a muscle disease. Now

that I don't use a cane anymore (I wear AFOs that aren't

visible under long pants), people assume I've miraculously

recovered. It's so frustrating because I look " normal " when

I'm anything but! It's like we have to keep reminding people

of our illness, so that we're not expected to do what might be

simple for others. For example, I cannot simply stand in one

place and have a conversation with someone without holding on

to something or someone or lean against a wall. It should be a

simple task, right? Wrong. In reference to the Cher concert,

have you applied to your state for a disabled parking permit?

If not, I encourage you to do so. In the meantime have your

husband drop you at the front door - my husband's been doing

that for years, and it's just become a way of life for us. I do

know how you feel about being married to a very active and

athletic man. I'm in the same boat, and it did take some time

before he got used to my limitations. Now, sometimes I think

he's too protective and doesn't let me do things for myself.

Occasionally I feel like I'm holding him back, too, but he

assures me I'm not. Then I get feeling sorry for myself

because I can't do the things I used to do, and I want to do

things that we've enjoyed over the years. As far as my kids,

it doesn't bother me one bit to ask them for help - my

expectations of them are high. They can pick up their own

dirty clothes! However, my disability has in many ways opened

windows for me and my family. Since I'm now on disability and

not working 50-60 hours a week like I used to, I'm home more

for them, and in some ways I feel like I'm a better wife and

mother. I try to find ways to feel good about myself, and

that's how I get through the day. , hang in there and

don't be afraid to remind your family and friends that you are

special - and I don't mean that in a bad way.