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  • Over-sharing :/

    Newly diagnosed and needing all the support I can get! Does anyone have a problem with over sharing. Howwww to resist the urge to over share.... to people who really do not care. Or get it. Ugh.

  • #2
    Re: Over-sharing :/

    Sad, but I can so relate. I've had IC alittle over 2 years and I still struggle with this. In the beginning, I just wanted others to understand the stuggles that I was going through and I didn't want to sugar-coat any of it. I found it so difficult to find anybody who really seemed to care about what I was saying or what I was going through. Their lack of empathy made me feel more isolated.

    Reading the IC posts helps. I get to see how others are dealing with their emotional/physical pain. I think you need to be able to express yourself and this board allows you to do that. I'm lucky that I have a spouse who totally understands my daily frustration with this disease so I vent to him a lot!!!!!



    Originally posted by bwarren92 View Post
    Newly diagnosed and needing all the support I can get! Does anyone have a problem with over sharing. Howwww to resist the urge to over share.... to people who really do not care. Or get it. Ugh.

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    • #3
      Re: Over-sharing :/

      I came here for information and support because I knew my friends were unable to relate to what I was going through. Now and then I would tell them I hadn't been feeling well because of my bladder pain but that was about it. Plus I got kind of tired of hearing "Are you better yet?" like it was an infection or something that would just go away with an antibiotic so I didn't really share much details. It would have been nice to have a support group but there was none in my area.

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      • #4
        Re: Over-sharing :/

        I live in the Bay Area in California, and haven't found any support groups either Oh well. This forum has been very helpful

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        • #5
          Re: Over-sharing :/

          I had found a couple in LA but I would have had to drive 2 hours to get to them and when your bladder is hurting the last thing you want to do is drive anywhere that far.

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          • #6
            Re: Over-sharing :/

            Originally posted by bwarren92 View Post
            Newly diagnosed and needing all the support I can get! Does anyone have a problem with over sharing. Howwww to resist the urge to over share.... to people who really do not care. Or get it. Ugh.
            I learned years ago that no matter what we may be going through in life...child birth, child rearing, depression to more severe things like cancer...we all need to share our burden's with others who have experienced similar things. For me, I learned this lesson when I quit smoking. I don't think I could have achieved that amazing feat without the support of others going through the same thing. So when I was diagnosed with IC, I found this forum. It made all the difference.

            It helps to have a supportive loved one (I have my husband) but they really don't totally understand. And I'm not the stoic type that endures without talking about it. I'm sure my husband is sick of hearing my daily bladder reports! So, I totally understand the urge to over share.




            **************************************************************

            Experienced first symptoms in 2007
            Diagnosed with IC 6/13

            Diagnosed with PFD (Pelvic Floor Dysfunction) 8/13

            Medications: .5 mg. Ativan, occasionally for spasms

            Supplements: DH Aloe Vera capsules, 3 per day for maintenance and 6-12 per day during flares


            Following Strict IC Diet

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            • #7
              Re: Over-sharing :/

              Every day my husband asks me "how was your night?" or "how are you feeling today?". I am so thankful to have a caring partner who understands. I am totally honest with him in how I'm feeling and what's happening with my mind and body. Since we are both retired, we are with each other 24x7 so he can see and hear for himself most of the time what's going on with me. He can see when I'm in pain. Sometimes he can hear it, too. He's extremely caring and empathetic since I went thru a rough time with him when he had an amputation (we didn't see THAT coming). My adult daughter is the same way. Now, my adult son... although he cares, I think he prefers being ignorant about it. Some days when I'm hobbling instead of walking straight my son might ask "are you OK?" And I'll say, "No, I'm not. I'm hurting today". And he leaves it at that.

              I went to lunch with some old co-workers a couple of days ago and they all wanted to know what this IC thing is. I explained and I think they understood. No one treated me like I was psycho or making it up. Since September is IC Awareness month, I've been posting the daily tips every day on my Facebook page so that all my friends can have a better understanding of what it is. I was in a waiting room at an auto repair shop explaining it to someone, and another person who was eaves dropping wanted to know more about it.... so I told them. If the person listening has a compassionate bone in their body, I don't know how they can listen and NOT care.

              I try to keep my explanations simple but complete. I am candid and blunt when I'm explaining to someone what it is. I don't consider it "over sharing". I never whine or ask for pity because I'm just not made that way. After I've laid it all out there, I want people to walk away saying to themselves, "Wow. I had no idea!" So far, NO ONE I've talked to about IC has acted like they don't care. I think sometimes the way a person reacts to what you say has a lot to do with how the information is presented to them.
              Last edited by Bladderella; 09-21-2014, 03:25 AM.

              "When you gotta go, you gotta go!"

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              • #8
                Re: Over-sharing :/

                Thanks, that's really helpful advice

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                • #9
                  Re: Over-sharing :/

                  I always tell people who bug me about my diet because they need to learn a lesson. Many times I have told people that I do not drink coffee and then had them harass me about it, or people continually offer me beer when I am out. 'Are you sure? Do you want his one? Are you sure?' So I usually just tell them. Then if people say stuff like "I love coffee so much I would just have it anyway" then I tell them that it's not just a moment of pain; I say that a flare can actually last for days and cause retention and frequency and it really wastes your time and makes life really hard.

                  So yeah, I'm kind of brutal sometimes, but people seriously need to learn that it's not okay to ask someone why they don't eat something. I mean, what are the possible answers? Generally the reason is going to be IC, IBS or some kind of other adverse reaction. Or maybe the reason is that I struggle with my weight or in the case of alcohol, that I have an alcohol problem. I mean, the answer to "why don't you eat/drink ____?" is always going to be personal and I think people should realize that instead of us having to avoid or make up excuses.

                  Of course, if you do not want to feel weird or annoy people then I am not really sure how to do that. Not exactly my area. So, sorry I couldn't be more helpful about your original question but my point is, I don't think YOU should feel bad if THEY brought it up.

                  I guess one thing I am not public about at all is my infertility, and in that regard I just found one person (a very old friend) who I can message on Facebook, and I also use forums. At first I did not want anybody to know but when people said insensitive things it was really hard. It is much easier now because when something upsets me I will send a message off to my friend and it makes me feel a lot better. So if you have someone that does make you feel comfortable giving them updates occasionally will probably help you with your urges to be snarky with people you do not know so well.
                  Symptoms since June 2012, Diagnosed June 2014. Symptom free since November 2015.

                  Treatment: Strict IC diet, Pelvic floor physiotherapy (Graduated), Visceral manipulation therapy, Pelvic muscle injections from a pain management specialist, and yoga and relaxation
                  Medications/interventions: IUD for pain
                  Supplements: Ultimate Flora Vaginal Support, NAC (for endometriosis and mood), Fish Oil, Magnesium, Vitamin D and Vitamin K3

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                  • #10
                    Re: Over-sharing :/

                    How about when somebody bakes you or buys you something you cant eat? :/ Of all the social things I have found this the worst. It makes me look rude and ungrateful.
                    How is it possible to love an animal more than anything in the world combined? I love you Emily

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                    • #11
                      Re: Over-sharing :/

                      I think the most important thing is to let them know how much you appreciate the thoughtfulness. I think it's okay to express how much you'd like to eat it, but you can't have (whatever is the irritant) without having pain later.

                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      Have you checked the ICN Shop?
                      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                      Patient Help: http://www.ic-network.com/patientlinks.html

                      Sub-types https://www.ic-network.com/five-pote...markably-well/

                      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                      [3MG]

                      Anyone who says something is foolproof hasn't met a determined fool

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