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  • vm
    replied
    I tell most people I have IC if it naturally comes up in coversation - and I did when I was symptomatic, too. But I have been fortunate to be surrounded by people who were supportive and believed in the disease and the awful effects it can have.

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  • meme
    replied
    Sometimes I try to inform people and it just doesn't work. Have come to the conclusion that people w/out IC will never "get it". I tried to be open the other night and they acted like I was lying b/c to most people there's no way that some one could not have so many "natual foods" or vitamins, or anything else that triggers flares. Whenever I flare at my parent's house, my dad always starts in on how "there's no possible way that I could actually be peeing every 15mins and something is coming out". He says its not physically possible. Sometimes I'd like to just take him with me and say "see, do you hear and see that...still peeing...you're right, it's 'impossible'...It must just be all in my head" So frustrating!!!!!!

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  • Want2BPainFree
    started a topic Another Post

    Another Post

    Another post made me wonder if it is possible that keeping our disease so close/private to home is actually counterproductive.

    I realize that these are private issues, but I have been telling everyone I know that will listen about IC and what I am going through, not just physically, but also with doctors and the run around about getting a diagnosis.

    It isn't because I want sympathy or because I want pity. To the contrary. I just want people to know that others can be suffering silently.

    IC isn't a stroke, or a heart attack or something that can be "seen", so would it be better to quiet the snide voices in our head that want to say something nasty to impolite people or quell the urge to poke their eyes out with shrimp forks so that we can calmly and matter of fact-like tell them what IC is and how it is common and quite sufferable?

    Please discuss.
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