How to explain IC?

[Inis]

This isn't really a family question but I couldn't figure out where else to post this.

How do people explain IC to friends, co-workers? I basically have told no one because it's too hard to describe. (I only told my boss I've got a chronic disease that wouldn't kill me, and he didn't pursue it any further...)
And I've always been pretty open with other items of a personal nature- I had problems with fibroids the last few years and had no trouble discussing THAT particular organ with anyone, even my male co-workers who I'm friends with. But I'm really uncomfortable discussing IC- and there are times when it would be nice to be able to talk about it, esp. when I'm feeling like crap.
Anybody got any suggestions?

Thanks....

[justdeb1]

((inis))

welcome to the ICN! I dont know if I can answer your question, its pretty tough to describe IC. So many people have so many different symptoms, although most are along the same lines, many are at different degrees. I still dont even try to explain this disease to "friends" because they all go "oh..bladder infection" uh..nooooo..."oh..but you look good..."...live my life for a day..then tell me how good I look. Its complicated. the best thing I can tell you is to print out info on IC *ICN has all the info you need* if you're comfortable doing it that way. You stated you werent comfortable discussing this with anyone, so dont discuss it until you're ready. When people ask...you dont have to say anything. You can just say you dont feel well, etc. Until you're comfortable talking about IC and all its characteristics, then that will be your deciding factor. How long ago were you diagnosed?

Me personnally, very few know I'm on disability, but those that do constantly judge me, people that are supposed to be my "best friends" constantly say "but you dont look sick..I see you outside raking the yard or helping your husband blah blah blah." My response is this "Yes, you might see me once in a while do something along those lines, however, did you see what meds I took PRIOR to going out there and WHEN I came back in? Did you see me laying in the bed for 2 hours afterwards?" no..you didnt..so therefore, you dont understand. I cant just lie down and die spiritually, I have 2 kids and a wonderful husband, and I need to live my life a little, even if it does kill me to do it." After that...they pretty much shut up *smiling*. But its been a hard 4 years of explaining..and even my inlaws have yet to understand what IC is. My family knows because I've given them every thing to read up on..so they know and they've seen me.

When you're ready...and even if you're not..its up to you to decide whos business your health is and whos isnt.

Hugs to you!!
deb

[darlene]

I was a support group co-leader for my other disease(Crohn's disease) for several years. One of the most common complaints of group members was that people just did'nt believe that they were in severe pain because they looked fine. One woman in our group had frequent intestinal blockages.
This can be fatal if not promptly treated.The people she worked with just didn't understand this. One day she had a small growth removed from her face. It was covered with a small band-aid. She was shocked by the reaction at work. People were asking all kind of questions about this minor procedure. What was different this time? They could see the band-aid. That made it real to her co-workers. People can't see our pain, so they just don.t understand.

[yvette]

Hi Inis, I think part of the problem is that people are VERY turned off and consider any talk of "urination" a very dirty subject.

I have managed to tell people that I have an incurable disease. That although I may look fine on the outside, I have a degenerative disease of the bladder. And it causes MUCH pain and results in frequency & urgency, up to 50x in the restroom. And overall leaves me very drained.....

Or I say, "it's like having UTI/Bladder infection x100 and "no cranberry juice WILL NOT help, because its to do with the muscle integrity, NOT an infection. There is no bacteria or pathogen involved. It just feels like the infection from hell."

The descriptions I gave have some flaws, but they illustrate enough detail to give people a good enough idea of what's going on. And it doesn't entail nitty-gritty details...which can really gross people out and turn them off from ever listening again. Not everyone can handle medical stuff.

I hoped that helped some.
y.

[liisa]

Inis,

It is hard, explaining to others... Darlene is right, if you don't look sick, you aren't sick to so many people.

I have to meet with my advisor every week. Each week he says "what have you done? you LOOK FINE". It is hard to express to others what you feel. Many of us have learned to cover up our pain - my family doesn't even see it.

I too keep it very private, when people ask why I'm so far behind in school I just say "I've been sick" and in a way that says "don't ask". My father has been through a lot of suffering, his heart has caused a lot of fear and pain (physical). He doesn't understand even a tiddlywink of what I go through - he cannot open his eyes to others pain.

Sometimes I try to describe the pain and suffering in my journal - let me tell you, this is no small feat. There are days where it takes every ounce of your energy. It comsumes your every waking thought. The moments tick by so slowly, you concentrate on trying to not go pee for at least two more minutes... and then you can't take the pain anymore...

To be honest, I gave one of my advisors my voiding/pain journal, they were shocked and seem to treat me a little more kindly.

Hugs Inis, we are on a long journey together, it is one of self discovery and self respect.

Liisa

[Teri]

Inis~the only people that I tell about IC are the people who are close to me. Otherwise I just say I have a bladder disease and IF it's questioned, I will get into detail. Usually it's not questioned tho. Just like the band-aide story....if people can't see it, they just don't understand it. I don't even bother telling some of my dr's because I have found too many dr's who don't have a clue what IC is. Or, they say that they have heard of it but don't know anything about it.

You have to be comfortable with who you choose to tell and hopefully the people you choose to tell will beable to support you on your bad days at work.

I worked for 17 years with IC but didn't get dx'd until after working for about 14 years....that's when the IC got REALLY bad. I pretty much kept quiet about the pain because I was in so much denial and I was so angry...there were always the bathroom jokes about 'you have to go AGAIN' and I could handle that part....it was after a bladder suspension that I started with the horrific pain. I found that the people that I had been so close to for all of those years really weren't interested in hearing how crappy I felt. The pain finally forced me to quit my job.

I still have family members who don't have a clue what IC is and they have watched me go thru sooooooooo much in the last 6 years. And, I'm done trying to 'explaining' to them.

The ICN is where I get my IC support from. I can come here with any problem, physical, emotional, spiritual or family related...

Sure do wish there were an easy answer to your questions.

tons of hugs

[Lady J]

I say I have an incureable bladder desease that won't kill me but can be painful. I also say the membrane that is supposed to be in my bladder is shredded which is true. Sometimes I say both of these things, sometimes I say one or the other. They are fairly short winded explanations and they usually don't inspire converstaion or force me to talk about peeing with people if I don't feel like it.

[L. Thomas]

heart attack of the bladder.
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