How Do You Explain Your Disability?

Aarcyn · 03-21-2011, 11:19 AM

For most people, I send them Christine Miserandino's Spoon Theory about Lupus. I tell them my sypmtoms are a little different but the idea is really the same. It is really a compassionate explanation and invokes an understanding of those that want to respond. Lupus and MS share sx's.

http://www.butyoudontlooksick.com/ar...e-miserandino/

SallyC · 03-21-2011, 11:27 AM

The idiot was probably just breaking the silence with a little humor and didn't mean it, the way you took it..

?

Let's hope he/she wasn't cruel enough to spout that off in earnest.

Kitty · 03-21-2011, 02:21 PM

Sally, it's a cousin that I haven't seen in years and years. I've decided that I'm not even going to reply to her. It's not worth the energy.

I might send her the link that Cyn suggested. What I'd really like to tell her is that the "gravy train" I'm on is a one way ticket...with no stops. And no refunds.

I guess if you're in the rat race every day then being able to stay home might sound appealing.....for a minute.....but there are "conditions" to this that aren't so great.

SallyC · 03-21-2011, 06:56 PM

Quote:

Originally Posted by Kitty

I guess if you're in the rat race every day then being able to stay home might sound appealing.....for a minute.....but there are "conditions" to this that aren't so great.

Tell me about it..

J FITZ · 03-28-2011, 02:19 PM

I know how you feel, i have ms and have been dealing this problem since i was 45, i am 67 now. One day at a time.

Quote:

Originally Posted by kitty

how do you explain ms to those who don't have it? How do you explain why you have so many limitations when they aren't always apparent and obvious?

The reason i'm asking is because of a comment someone made to me in an email. I haven't seen this person (a family member) in a long while so they aren't familiar with my daily struggles and limitations.

After i explained that i no longer work and am living on ssdi they wanted to know how they could "get on that gravy train".

I haven't responded and won't until i'm a little less offended. How can folks be so clueless? I really don't owe them or anyone else for that matter an explanation. But i always seem to have trouble describing my condition to those who aren't familiar with it. It would take all day to go over all the different sx i deal with.

legzzalot · 03-28-2011, 03:17 PM

I had someone ask me "what's it like?" I replied it was like being in prison, but not as much fun. There is torture, but at least in prison you have hope of escaping and someone else do cook your meals and do your laundry.

She never asked me about it again.

NurseNancy · 03-28-2011, 04:27 PM

if i'm asked outright i give the short but accurate explanation about MS being a non curable, progressive neurological disease of the CNS; brain and spinal cord. they usually don't ask me much after that.

the thing that bothers me about my MS is my short term memory loss. i can't remember names and don't want people to feel they're not important or that i don't want to bother with them. i will more often say that not remembering is an MS thing.

i talk very calmly, like i'm in my educate mode.

please don't let this person upset you. it's ignorant and rude. let the thought go into the clouds.

legzzalot · 03-29-2011, 06:17 AM

Names.... it's not just me!

I was on the way to the lawyer the other day when I ran into the truck driver I used to see every day when I was working. A very sweet man, who's number was memorized. I can remember his truck is yellow and his name is on it but I could not (and still can't) remember the man's name.

it's frustrating.

azoyizes · 03-29-2011, 11:46 AM

Kitty, I think what you said about not answering the email was the best idea. Especially since you haven't heard from this cousin in a long time.

With a service dog, I get all kinds of questions. One man actually looked at me and asked, "can you see?" I said "yes"! I had the manager of a restaurant come over to the table and say, "I see you have a guide dog. We just got in these Braille menus and I was wondering if you would like to have one". I explained that Monty was not a guide dog but a service dog, and that I was not blind but I fall down a lot. That one was comical.

One thing I love about having Monty with me is that people usually focus on him and not on me.

karilann · 03-31-2011, 11:54 AM

And I quote: A possible return email might begin something like: "I'm sure you didn't intend your comment to be hurtful to me, but I was taken aback by the thought that someone might think that a person with an incurable disabling disease could somehow be using it to get a free ride..." ..."If you'd really like to know how I got on that 'gravy train', I'd be glad to share some medical information about Multiple Sclerosis so you can decide for yourself if what I had to pay for the ticket is worth it...."

Making someone "feel" the carelessness of their comment....Priceless!

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