Do I Have To Explain AGAIN?!?!?!

[Minerva]

SHeesh when people ask me why i don't do things anymore or why i look so tired or why i cant go to the movies or go out to eat anymore, I am tired of explaining. Nobody has a clue. I didnt have a clue before my dx 3 weeks ago and i have been living with this and misdx for 8-10 years. It seems i have to re-explain to each person i come in contact with why why why and what IC is and what it does to me. It is new to me and i understand that it is new to them also BUT sheesh i am getting weary. I would like to spend my time and energy working on getting better rather than explaining every little thing. I feel like wearing a button: "Hi My Name is Minerva and I have IC and I feel like crap" lolololol

[eak]

And everyone would exclaim, "Wow! Your name is Minerva?! That's cool!" and totally miss the point of your button.

-Liz

[ICNDonna]

People who are close to me know about IC and that there are times I can't do some things --- I don't worry about other people understanding. If anyone shows any interest, I am happy to educate them about IC and print out some information for them to read.

It's a tough one to deal with, isn't it? When we go out to dinner, I explain my diet restrictions by simply saying I have food allergies. And if a particular food causes me pain, I really believe it is totally truthful to describe it as an allergy.

When we go to one of the places where you can order breakfast any time, that's usually what I do. I can always eat eggs and toast.

Hugs,
Donna

[aluttrll]

I still haven't told a lot of people and I was misdx for almost 10 years also and only knew last fall. It stinks because it is so personal and there are still some dorks who think I am going to die.

I was dating someone when I got dx and I know he just couldn't understand. He hated the trips I made to the hospital for tests and for emergencies that were all related to IC.

Now I just tell a few people. If my own professor gives me a hard time about it, then I figure the rest of the population will find it odd. I am very lucky though. My dad told his side of the family and did so much research on it. I think my mother feels the bladder is too delicate a topic to talk about. Well I told them all when I went down to 95lbs (usually weigh 105) and looked like I had some eating disorder. The pain was just too bad to eat. I wanted to yak. So it could be worse, they could think all your trips to the bathroom are to purge [img]rolleyes.gif[/img] [img]eek.gif[/img]

[Kara23]

Minerva,

I know your frustration quite well, not only do my friends not get it, but my co-workers and even my doctors! I LOVE your idea for the button!
Maybe we'd actually spot all of those 700,000 people that have IC in the US? Eveytime we explain it to people it makes us upset and angry that no one wants to understand. I've driven myself really crazy trying to get my work to understand but they refuse to acknowledge that I am really sick, they say things like, you are walking around??

Anyway yes, I understand what you are saying.


Kara

[Teri]

I don't bother telling people anymore. I just say that I have a bladder disease and change the subject. If I'm well enough to be out with people, I sure don't want to spend the time talking about my friggin' bladder.
I have 2 kids and 3 stepkids....all adults and only 1 of them have taken the time to know what my life is like. The others think that I am lazy and never want to get out of bed or leave the house. I've tried for years to give them info on the disease but the papers just gather dust and my feeling are hurt AGAIN so I give up.
That's pretty sad when we should be teaching others about IC and what it does to our lives, I just don't have the energy anymore [img]frown.gif[/img]

[DonnaReagan]

Ditto to all of you. It is tiresome having to explain it. I've been on a flare for 2 weeks now -- prior to that remission for 1 1/2 years. I have lots my fingers in lots of little pies = so to speak -- lots of volunteer stuff (makes me feel important, you know.) Anyway -- some things I just have to attend -- so I'll have my hubby drive me somewhere because I'm hopped up on the pain meds. That's the button I need to wear: "I'm not slurring my words because I'm a drug addict -- I have a legitimate reason -- I feel like crap because it feels like acid is in my bladder. I would prefer to be in bed with a heating pad between my legs. But I'm not because I'm a martyr. Deal with it." And then maybe have some kind of odd smiley face.

If I have to stay on these meds too much longer -- I just might make such a button. It'll give me something to do while I lie in bed with that heating pad.

[Kathi]

I too, just say I have a bladder disease & I'm not allowed certain foods or drink. When they ask again I just say "it's my bladder disease".
I also say, it's not fatal but it is forever.
Scream!!!!!!!!Kathi

[Lady J]

I use the "Bladder desease" thing too. It's short and sweet and done. IF they have any more questions, I say it's not going to kill me but it's not cureable and that the protective membrane that protects the bladder is all torn up in me. That is what they saw in the cystoscopy and it seems to give most folks some sort of picture in their heads and they move on.