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Sunday, February 5, 2012

Invisible disability


Sometimes it is hard living with an invisible disability. Only my specialists understand and actually call it a disability. I have no walking stick or wheelchair, I have no limp or twitch and to all I look well and fit and maybe just a bit overweight. The receptionist at the physio department does not get it, my kids don't get it and my husband does not get it. Even other people with disabilities do not get it as to join this months disability carnival I was expected to talk about my fave ""things that make the world accessible for us."
I guess the only thing I can say is ramps and lifts, at least they are the only things that make my world more accessible. You see I can walk (though not the same as before and I can no longer dance or get down on the floor with my grandchildren) but if I walk too far or up steps the next day I have to lie horizontal. I have a muscle disorder, a form of muscular distrophy that means all my muscles are extremely weak (some more than others).
I also think my main fave thing of accessibilty is my new laptop as I could no longer sit up at the computer due to muscle pain in my neck and shoulders and jaw. With the laptop I can lie down and connect with others all around the blogosphere and they cannot see me and do not know I am lying down and am in constant pain all over. This is how I become Not My Disease on a daily basis.
Here are the links to the Disability Blog Carnival:
Rolling Around In My Head
Disability Blog Carnival #80 is up NOW!

12 comments:

GirlWithTheCane said...

There are people on the Disability Blog Carnival that understand invisible as well as visible disabilities - I have both myself, and I'm sure I'm not alone. I'm glad that you wrote this and gave the perspective from someone with invisible disabilities, because society needs to hear more of that perspective.

bob said...

My disabilities are mainly cognitive - processing any kind of information, reading, seeing hearing, smelling, tasting, touching are all difficult. So my disabilites are invisible too. Being awake is like trying to surf the net with a computer from 1995.

Really there is almost no accessibility built into the world for this kind of thing.

Sometimes it seems that people don't want to get it. But some do. You are not alone

I'm Not My Disease said...

So great to connect with others through the carnival, thanks for leaving these messages and food for thought - we are all so different yet so connected in certain ways. Blog on!

Lene Andersen said...

Thanks for writing about this. We need to bridge the gap between visible and invisible disabilities - together we will be stronger, have a louder voice.

Kat said...

I appreciate you bring a voice to chronic invisible conditions. I understand the frustration all to well. I have motor planning disorder/dyspraxia (or about 4-5 other names for the same thing depending on whom you talk to). I do what I need to do to make things work for me, sometimes with judgement from the world cause I'm a young "healthy" college student. Great blog!

Anonymous said...

I am one of the people who "do not get it". Let me tell you I get it more than you think. I get that I have to be the sole breadwinner, do most of the housework, pay for cleaners, do most of the stuff with the kids ,look after the gardenetc, listen to relentless complaints over decades and then get slagged off behind my back.There are better models for dealing with disabilities then are currently being engaged. And criticizing those who have supported you, behind their backs and to the whole world is not one of them. I guess your proccupation with your own condition means you have failed to deal with the fact that I am suffering a major disabling illness myself.But that doesn't count, does it?

Michael (Deaderpool) said...

Great article, check out mine over at Occupy Healthcare http://occupyhealthcare.net/2012/11/i-am-visible-my-disease-is-not/

healthgrades said...

The cause of muscle weakness has been traced to the transfer of information between nerve and muscle fibre, and to two ways in which data transfer can be impaired. One is if antibodies are binding to the muscle receptors and suppressing the incoming nerve signals,





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Stephanie Lewis said...

Sounds a lot what I went through Have you seen a Rhumatologist. Not saying it is Fibromyalgia but sounds like it.

Stephanie Lewis said...

Yes I have FIbro amongst other things

Erminia Cavins said...

Hmm... that kind of disease really can confuse most of the people around you. But I think you shouldn't be conscious with it; you don't have to explain. It's not your fault that you get that kind of illness. The only time that you have to prove your “disability”'s existence is when you applied for disability benefits.

#Erminia@ParmeleLawFirm.com

cottonx2 said...

Thank you. You have said everything I have thought over the past few months. It is as if it was MY voice.
One thing you left out....People who know nothing about this disease should definitely not try to diagnose it with something different.