I'm not makin' this up
 

It's bad enough that many of us go through the "It's all in your head" phase of the diagnosis process, even though OF COURSE the doctors need to rule out anxiety or other mental causes of symptoms.

But ever after, MS is a disease which causes you to sound like you're making stuff up. That's why I don't generally discuss specific symptoms unless I have a good reason to. Otherwise, conversations tend to go like this:

"What do you mean you were awake all night again? I thought MS made you tired all the time, and you COULDN'T stay awake?"

"What do you mean you're constipated? I thought you said you had control problems?"

"What do you mean you can't manage to do a load of laundry? I thought you said you work full time?"

"What do you mean your legs are like jello? I thought you said your muscles stayed stiff and you couldn't loosen them up?"

"What do you mean you can't follow what I'm saying? You facilitated that meeting last week!"

"What do you mean you're disabled? You look fine to me!"

And the beat goes on...

I know what you mean.....people who don't have MS just don't (and never will) "get it". I don't even try to explain myself anymore....not even to family members. It's just not worth it. I feel like I have to justify every little ache and pain (some of which are not even MS related).

Those close to me know I have MS.....if they want to dissect my every sx than let them.....I don't have the energy to!! :o

I fully agree with those statements. I've heard them and those like them... :sigh:

B2U, I empathise with you!

Just yesterday when visiting DH at the hospital, I had a nurse who used to work amongst MS patients tell me "But you look so well". I could have kicked her kneecaps out from under her! :mad:

You'd think with her experience with MSers, she'd have known better.http://i3.photobucket.com/albums/y95...iley/angry.gif

Thanks B2U - I needed that this morning! :hug:

LOL, so true :D People have thought that Provigil offers super powers and expect wayyyyy too much on a daily basis. I came to the conclusion that I am just me and that people don't deserve any explanation at all :D.

I understand that. I hear this: "Oh really?!, MS?" as they look around for a missing wheelchair or walker...

At that point, I just walk away ;)


Niko:cool:

There was an episode of Judge Judy once where a woman told her she was disabled and Judge Judy asked her what was wrong. When she said MS Judge Judy said "you look fine to me". Just shows how ignorant people (who think they know everything) can be. I've learned so much since being dx with this condition. I no longer make any comment at all regarding how they look or act when speaking to someone with a disability.....could be that they're having a "good day" (good for them!!) just like we all have sometimes.

Being disabled doesn't mean you withdraw from life...you just have more challenges.

and I love all these phrases with me being undx...

what do you mean you hurt all over..thought you said it wasnt fibro...
what do you mean you cant remember that, you run a McDonald's..

what do you mean you have a HC placard for van, when you are always working so fast on your feet at work...how could you ever need a HC card....

what do you mean, you cant pick up your own child...you did the other day...and running around with her...

etc etc...thanks I love threads like these...vent but having fun too..hugsss,sarah

Or there's the opposite like the friend I have who asks me every time I talk to him (which is daily) how I'm feeling and then I get a heavy sigh if I tell him the truth. Or he'll ask how my feet and legs are and whether or not I'm tired and then I get a heavy sigh if I tell him the truth. :rolleyes: I can't lie to him or be generic because if I do or I am he asks pointed questions about my sx. :Dunno: So I've taken to sighing heavily when he asks. I just don't know how to combat that! Makes me feel like a really diseased person. :mad:


Isn't it fun being a member of a "club" where the general population gets to invent new ways to torture us with our disease process?