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Talking with friends?

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  • Talking with friends?

    This past 4th of July, I had friends come up who I haven't seen since my diagnoses of IC. I found myself trying to describe IC, and tell them why I couldn't tolerate pizza, or caffeine...and even worse, why I had to pop a pill in my mouth an hour before eating or two hours after. Any thoughts on how to talk to friends about IC? I was getting strange looks except from my dear friend who is a CNA. I mean, how do you explain a disease with no known cause and no known cure? Ahhh it's so frustrating! cussing How do you do it? banghead

    Thanks all,
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

  • #2
    It ishard toexplain this to adults I found. but yesterday when explaining it to my god child Jennifer who is my 15 year old neice, she got it and asked why I couldn'teat tomatoes or garlic, I said I have ic interstitial cytitis which is the inflammation of the bladder. She says to me those are very acidic and not good for your bladder and it will make your bladder inflame more. I have no idea where got this and understand this. I am grateful for that. Dad and Odette are trying to understand this for me. I come in the house today and smell garlic, Odette goes you can't have that, and I said I know. This i sso hard to explain to friends and people. Why do you have to go the bathroom so often? I need a register near the bathroom. Calling my uro tommorow to have him type up a letter to explain to them I have this medical condition and need to be near the bathroom. granted, they are good at work with me, I just feel some of the cahsiers are complaining cause I always get the one of the end registers. I shouldn't worry what they say about me. Now I am on rant, so sorry. I wish I had the magic words to say how we explain it to them. It i shard isn't it?
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie


    • #3
      Yeah, work isn't much of a problem for me. My boss is so wonderful, he says if I gotta bolt to the bathroom, then I just bolt. It's nice to have understanding at work. Previous employers have not been so nice. cussing Oh well. Deb, your niece sounds very intelligent. If only more adults could be like her. My family is very understanding, immediate family anyway. I swear, one of these days I'm going to tape a sheet about IC to my forehead so people will quit asking me questions and quit treating me like I'm from another planet!!!!!! scream
      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


      • #4
        Also, I've got some "friends" who think that I'm whiny because I have to slow down my pace at times. How does anyone deal with people like this?
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


        • #5
          I have found that those people who are truly good friends make an effort to understand my disease. If there are those who act like I'm nuts or like I'm exagerrating(lots of people think that), then I figure I don't need to waste my time explaining it to them anyway! wink I try to explain to people that it is NOT just cystitis(that's why I don't like the name!) and that it is very painful for me. I wish there were an easy answer as to how to deal w/ people who don't understand.
          Deb, don't worry about what people say about you. You can't help it if you need to go to the bathroom all the time. I know it's hard when people are talking about you though! Hang in there---
          If you have time to worry, you have time to pray!


          • #6
            While I was drinking I had I had a ton of friends and for a couple of years after some of them stuck around. Then they just dropped out out of my life like crazy. At first it hurt but then I realized that it had actually helped me and it had taken almost all of my urges to drikng away.

            Worked pretty must the same thing when I was finally Dx'd with IC. The remaining friends would call to go to lunch or a movie, ANYTHING to have a 'girls night out' and I found myself cancellig more often that showing up. There went the last of the friends.

            Over the last 4 1/2 have years I've gained alot of friend within an hour and a half from me...these people are truly friends. They don't leave when things get tough...they are there right beside me, helping me 100%. No, I wish I didn't have IC but if I didn't, the wonderful things in my life would have been missed and I wouldn't trade that for anything in the world.

            It takes time but if you stick around and become a part of the ICN family, those friendships will come to you too and you will find out what the word "FRIEND" really means~
            Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


            • #7
              I am french from Quebec, Canada. I have the IC since 4 years. I have been diagnosed one year and a half after my pain began. So, now I have chronic pain, but not the urinary frequency. Is there someone who is bilingual to help me with this website, thank you, Suzie