Dealing with the emotions that come with having OPMD

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Jersey Girl
65 posts
February 6, 2015 5:45 AM MST

This is a fascinating article about the emotional effects of being chronically ill.

There are just a few things that don’t apply to me, but most do.

There are four things that I absolutely do not like hearing from people

  1. When I tell someone I have muscular dystrophy, and they say, “I’m sorry. I didn’t know you were sick.”

  2. Don’t worry about the flight of stairs you have to climb to get into my house, we’ll help you!"

  3. Why are YOU on disability? You don’t look like there is anything wrong with you at all!

  4. (This one really irks me!) Two seconds after I tell someone I have muscular dystrophy, they say, “Oh, I didn’t realize that you have multiple sclerosis.”

Here’s the thing; I’m not sick. I’m not telling anyone I am sick. Do I look sick? Don’t assume I am sick!

If I say I can’t climb stairs, it either means that I can’t climb them or that I’m not comfortable making myself look rather pathetic trying to struggle up your stairs. If I tell you I can’t come to your home became I can’t climb your steps, it means I can’t. Not won’t. Can’t.

I’m on disability because I can’t do a lot of things. I sometimes hurt, but mostly I experience intense fatigue if I work at a job. My quality of life is shot if I work at a job. You didn’t see me when I spend evenings and weekends collapsed in a chair, so that I can rest up in order to “look normal” when I WAS working

Listen to what I’m saying to you. Muscular Dystrophy doesn’t sound anything at all like Multiple Sclerosis. Its different. Pay attention.

So, if you have read the article above, I’d love to hear your reaction.

jonana
8 posts
February 9, 2015 9:06 AM MST

Yea ! What really gets me is when they ask what the Dr’s have come up with and I tell them OPMD ! They ask what is that ? And when I try explaining they lose interest and walk off ! So now when people ask me how are you ? I say OPMD ! And you ?

Jersey Girl
65 posts
February 9, 2015 10:17 AM MST

Oh my goodness jonana, that is SOOOOO funny! I love it! I may borrow that one from you; its a fabulous response.

Jersey Girl
65 posts
March 2, 2015 7:09 AM MST

Here is another article that I can well relate to!

SK
11 posts
April 3, 2015 7:08 PM MDT

LOL! Oh, those are good! I can relate to every single one!

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