Spinoff/ Myths about Disability

FranticFrummie

Tue, Mar 17 2015, 1:26 pm

The thread about "myths people have about DH's or your occupation" got me thinking, and instead of derailing the thread I figured I'd start one over here. I didn't want it to go in the Disability thread because I want it to be open for anyone to read.

I'm disabled with a chronic illness, and I have just enough energy to keep a very basic level of house keeping and parenting. If I have a rare burst of energy I might work on my jewelry design or my website, but I don't put in nearly enough time to actually make a living at it. I am in pain all. the. time. non stop, without breaks.

I've had many people tell me "Wow, that sounds so nice. I wish I didn't have to work!"

Believe me, I would trade my illness for your 60 hour work week any day. I used to have that life, and I miss it desperately.

Just because I "don't look sick", don't think my body doesn't hate me, because it does.

amother

Tue, Mar 17 2015, 1:36 pm

DH has a chronic Illness. I feel like people look at our nice house and fancy cars and think we have a perfect life. They don't know what suffering and pain is going on inside our home. They don't know about the medical bills or the treatments.

morah

Tue, Mar 17 2015, 1:41 pm

I know someone with a serious condition that warrants a handicap parking pass. However, from the outside, they look just fine. She has been regularly harassed upon stepping out of her car in the handicap spot because she doesn't look disabled. Even though she has the blue thingy in her car, people assume that she is obviously borrowing it from someone or needs it for her spouse or child but uses it to her advantage when out alone etc. It is disgusting. You can be disabled without being in a wheelchair!

amother

Tue, Mar 17 2015, 1:55 pm

I have IBS and I feel like I constantly need to justify myself to others. It's been horribly embarrassing when I've needed to run out of a classroom or a movie theater because I feel a diarrheal episode coming on within the next 5 minutes (if I'm lucky). No, I don't have more warning than that. No, I can't take Imodium, because then I won't go for a week. I had to skip the last Israeli election (yay, today I actually got to vote!) because I was in the middle of an episode and the polling place was more than half an hour from where I lived- I was scared to be more than 5 minutes from a bathroom.
Yes, I've tried adjusting my diet- it doesn't help much when the IBS frequently changes its rules on me. (E.g. egg was a trigger for me for about a year, then stopped being an issue. I discovered a new sensitivity to hard cheese in the middle of a final; that also lasted maybe half a year and then disappeared.

But I only have 2 or 3 really bad episodes a year, and no warning as to when they'll occur, so there isn't much I can do about it but constantly adjust my diet and avoid places without bathrooms.