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Old 03-21-2011, 10:56 AM #9
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AynaDee AynaDee is offline
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Location: Illinois
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AynaDee AynaDee is offline
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Join Date: Jul 2010
Location: Illinois
Posts: 266
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Quote:
Originally Posted by Kitty View Post

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".
That made me cry. How incredibly offensive. I can't speak for every MS patient,but I am almost certain everyone of us would much rather have the 'work for our own money, I can do this on my own' ethic, but we don't have that as an option anymore.

I'm so sorry Kitty!

When I have to explain my disability to someone, I am usually pretty short and vague about it just because of them not being able to understand and I do NOT want to be judge or people thinking I am a hypochondriac. So it's a brief ' oh I experience alot of pain and can't walk somedays.' which sucks to say because I still get a raised eyebrow and the 'yeah i get pain too' look. What makes it even harder for me is my age. So explaining it to another 23 year old (or one in that age range) is very VERY difficult. I appreciate it when I briefly explain and the nice human people want to educate themselves more on it and want a better breakdown, but even then I don't like talking about it because reminiscing what I have experienced is somewhat depressing because I know that all those problems I just listed off will get worse over time...

So what I have found (that helps me feel more comfortable about it) is cracking jokes while explaining.. 'yeah sometimes I get these electrical shocks in my brain, or sometimes I'm walking and just fall over, I look like an alcoholic sometimes but I don't even drink, so I have a natural drunk all the time, It's healthier.' I know those aren't the best, but I find people don't really pry too much when I respond in that manner.

I really should be using a cane, I think there wouldn't be as much strain on my body all the time and I wouldn't have to pack in so much energy to just get my walk on, but I don't want people staring and judging me.

MS is a piece of you know what. But this disease makes people like us wiser, stronger, more compassionate and understanding. Doesn't seem like too many of us have that 'ignorance' thing going on.

Again, I am so VERY sorry to hear what that family member said to you, it literally broke my heart. Hang in there, we have this disease because we can handle it, that person that said that to you would NEVER be able to handle this MonSter.
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"Thanks for this!" says:
azoyizes (03-29-2011), Debbie D (03-28-2011), Friend2U (03-29-2011), Kitty (03-21-2011), SallyC (03-21-2011)
 


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