What and how much do you tell?

[Lissa]

Since I'm relatively new to IC (diagnosed IC, anyway ) I'm having trouble understanding what and how much to tell people. I've found that the second you say anything about a bladder disease people look at you like you've got two heads and quickly back out of the conversation. I want people to know that I have a relatively serious and painful disease and that while I need to sometimes leave work early, back out of obligations occasionally, etc. I'm still relatively healthy and functioning. In other words, how do you convey that you have IC in a way that doesn't put people off? I've tried saying something like 'apparently I upset the bladder gods somewhere down the line' or 'all the beer I drank in college is catching up with me' but people always want details, and then when I tell them they get that wierd look and change the subject. This is an issue with my co-workers and all my not-real-close friends. What do you guys do??

[ICNDonna]

You could go to the Patient Handbook and print the definition of IC so you can share with friends that way. If you don't have Robert Moldwin's book, "Interstitial Cystitis Survival Guide," you might consider getting a copy. There's a very good definition there that's very short and to the point.

Donna

[Melanie]

Hi Lissa,
As for your employeers or boss, I'd be careful here. I would get information from ICN and/or ICA. ICA has alot of good brochures that you could give them. I would also recommend having your doctor write a letter so that it can be in your personel file. This is very important if you'll need to miss work for appts or flares.
As for coworkers, procede with caution. I was extremely open with coworkers and it backfired on me. It's a long story which I won't get into now. I would answer their questions, but try not to get detailed, especially with male coworkers. Men usually don't know how to react.
As for female coworkers, most women can relate to having a UTI or bladder infection. You can tell them that it feels like you have a UTI but no actually bacteria. You still have frequency and pain. And "No, cranberry juice doesn't help".
Another word of caution, I probably wouldn't joke about it. Because if your IC worsens or you have a bad flare, your coworkers won't take it serious if you initially joked about it. I don't mean to scare you. I just think you should be prepared for the possible fallout.
The sad fact in all this is that most people don't know how to react to illness or disability. Especially when it involves a "private" function like urination.
I would be honest and answer questions. Some people will honestly care for you and want to help. Those are the good ones. Let me know if there is anything else I can do to help.
take care!
Melanie

[Lissa]

Thanks for the replies. My boss's girlfriend has has chronic bladder problems all her life, so he's as sympathetic as a male boss could be (not a slam, guys - just being realistic!) and the HR lady had a colonoscopy (sp?) right when I had my cysto/hydro so we compared horror stories afterward. It's just frustrating when I'm having a not so great day and people ask questions - 'do you have the flu again?', 'you don't look like you're feeling well today' etc. etc. Sometimes I just want to say "I have a migraine" and let it go at that - but I don't want to lie about it. Just seems like the 'migraine' route would be easier - most people have either had one or know someone who has so they can relate. Lucky for me - If I do get a major flare, have to miss alot of work and this company decides to let me go...I won't have any problems finding another job.