Talking about IC to others

[Agape]

I don't know about any on this board, but I find it very hard to explain to others how I feel and what is going on. I guess I look the same and when people at work ask how I am and I say not well, they then want to know why. I can't even seem to make my family understand the pain etc. that goes along with this condition. They keep waiting for me to wake up well like I had the flu or something. When I tell them there is no cure just treatment, they still don't get it. The diet is driving all of us crazy and I am about to start adding a food item every couple of days to see how I do. Right now, the meds seem to have helped and I am doing much better than I was a month ago.

[GriffsMommy]

For most people who I am not very close to I just give them basic info. I pretty much just say I have a bladder condition that feels like a constant uti and even though there is treatment that MIGHT make me feel better if I find the right one it will never go away. My family and close friends at work know that it's called IC but most don't because they just don't get it. I personally am not very diet sensitive so that's not a big issue for me but when I was following the diet at first, I just told people at work that I couldn't have that because it didn't agree with me.

[Berkshire Road]

It is hard. I mean, really, how much do you want to discuss your bladder with people who are only acquaintences? I usually say I have a chronic inflammatory condition, or that I have food sensitivities.

As for the people close to you, you really do need them to understand. A support system at home is so important in dealing with this crummy disease. I know that the ICA offers a pamphlet called "Because you care..." that explains IC in fairly simple terms, but is very clear on how much you may be suffering. There's one for partners and one for family and friends. Another thing to do is, maybe bring your parents or whoever is most important in your life, with you to some of your Dr. appts. That was one thing that really woke my husband up to the reality of what we are dealing with.

Meanwhile, know that we here do understand, and are always here whenever you need to talk.

[countrypixie]

Hi there, I am a newbie here too, just diagnosed three weeks ago. What I have come up with to help explain IC to my family and friends kind of goes along the lines of what my neurologist said about my migraines....We have a life altering condition, not life threatening, that can be managed but not cured. There are good days and bad days. I am lucky in one way, I was already altering my diet due to the migraines (no caffeine or MSG) plus I am allergic to milk. Elimiating more foods is only a chore in that there aren't to many things I can have left! I have tried to keep the menu of the rest of the family the same and just leave out certain things on my plate, or if I can't do that I open a can of Healthy Choices Chicken Rice soup. Its about the only one that doesn't bother me. My husband is used to dealing with my migraines hitting and wiping me out so the days the IC flares aren't to much different. We lead a very active lifestyle (love motocross) and its hard to be left out sometimes! Anyways, I haven't started treatments myself, going for my cytoscopy w/ distention in two weeks and going from there. HTH

[Shannonmarie018]

My boyfriend knows and my parents know. I haven't even told all my friends yet. I don't feel comfortable telling people at work, I don't think they'd understand and I don't want them to know. When I was at my worst and missed work, I lied and said I had an ulcer. That gave me an excuse for avoiding certain foods and drinking too.

[Berkshire Road]

I can understand where you're coming from, Shannonmarie, but still, IC is a disease and it's nothing to be ashamed of. When I feel up to it, I do try to explain, because that's my chance to do a little outreach and community education.