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Do you feel like a "victim" of the IC and the pain?

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  • Do you feel like a "victim" of the IC and the pain?

    I wasn't sure which thread to post this in, but I suppose the PAIN would be what leaves us feeling most helpless!

    I was reading a really good friend's blog this morning and here's what she wrote, I'm pretty sure she was referring to ME, since I've had a rough few months with the pain and doctors:

    I have learned that people often create their own drama. They create their own victim-hood and thrive on being a victim.

    I read this, and it made me cry. Do I really come off as an attention needy *victim*? Is THIS how my friends SEE me? It really hurts that they do.

    Is it THAT hard for people that live lives without chronic pain to understand those of us that wake up every morning to it?

    My question to you all is, DO you feel like a *victim* to the pain? If so, why? And do you loved ones feel your PAIN causes drama??

    I really don't know how to take this, part of me is hurt, but I don't want to seem like a helpless victim to everyone. But then again, its HARD when my fate and well being often is totally controlled by DOCTORS.

    Any thoughts are greatly appreciated,
    Hugs and Wishes for Pain FREE days!!,
    Kara ~reducing plastic waste one bag at a time~

    Facebook: Kara Kaiser
    Twitter: Love4Earth

    Me and my Guccigirl... she helps me through those painful hours!

  • #2
    Sorry that your friend wrote that. In my mind, I think that some people (wether they have IC or some other kind of chronic pain) thrive or like the attention of beeing a victim. But I also think those people are far and few between. Also, don't foget that people with out pain can create "victim-hood" about other things.

    Do you feel like a *victim* to the pain? At first I did. I thought "why me? why now? what did I do to deserve this". After a while I just accepted that this is happening and I have two choices, 1.let it consume me and rule my life 2.take control (or as much control as I can) and live my life as best I can.

    Do your loved ones feel your PAIN causes drama? My mom thinks I over-react to the pain sometimes. And thinks I just want attention or for her to call the doctor (when I am at my wits end) and says "well I know there's nothing he can do for you"....that irritates me because she's NOT a doctor. A few of my firends (and their parents) are wonderfuly supportive. Another friend just doesn't get it. At all. She saw my TENS unit, all my meds and pain pills....and STILL doesn't understand.

    I am sure that 99% of the population has felt victimised about something in some part of their life. There is nothing wrong with feeling victimised by pain sometimes.


    Medical "Issues":
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    • #3
      I do feel like a victim of IC..I feel like it has robbed me from part of my life..
      As for people thinking that I use IC for pity or at like a victim, who cares, I know how I feel and what I am going through. My sister does this to me, When I dont feel good and she is wanting to go do something or wants us to come over and I say I am hurting, she always says "If you keep thinking negative you will never get better" I am not thinking negative..IM HURTING!!
      My family just does not understand..

      Just keep you head up girly and try not to let your friend bother you, and you know if she really thinks this about you and does not have the nerve to tell you to your face, then I would say thats not really a friend at all....

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

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      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

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      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #4
        Are you sure she was writing about you? I'm sorry it hurt you but it does sound awfully mean.

        I don't know about feeling like a victim from the pain. I think the frequency can be just as bad as the pain depending on how bad it is. I do feel like I am in "no mans land" where no one understands how bad this really is. No one in my family understands why my life has changed which makes it hard for me but I have finally come to terms to just ignore them. I do what I can each day and some days are better then others.

        In now way do I think I create my own drama nor do I want this IC life. I assume she doesn't have pain??? Must be healthy and having a wonderful life? That is just plain mean and why did she post something like that?

        Don't let it get you down. You are a wonderful person the way you are!


        • #5
          I can really relate to this thread. And I'll tell you, I do know someone, in my own family, my father, who suffers from IC. Is he any source of help or comfor to me? No.

          Does anyone who lives without pain understand? No.

          This is what I have found to be true. Even my BF, who lived with back pain for years because of a ruptured disk, does not seem to really "get" why I am so upset.

          It isn't his private parts that burn. It isn't him that sex hurts for. It isn't him who has to eliminate favorite foods from his diet. It isn't him who had to stop exercising the way she likes to. None of it touches these people who just cannot understand what it is like.

          I don't think it's intentional. And I wouldn't wish this IC and/or vulvodynia on anyone, but sometimes, I just wish that they could live with it for a day. Let it be a thorn in their sides for just a little while.

          Maybe I'm bitter, but since I've had major health problems from an early age and because I faced my mortality at 23, I have a different viewpoint on life than most of the people I know. I have never ever found another person who truly understands that I can't just go out to lunch with them for Chinese Food or whatnot.

          Anyway, I'm just rambling now, and I wanted to say, if your friend wrote that it may or may not be about you. It may just be that she's immature. It may be that she's lucky and is healthy as can be. It may be that she never will understand or be supportive. We do outgrow friends sometimes, and we make new ones.


          Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

          Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

          IC Diet: Very diet sensitive, esp. to spices.


          • #6
            It's entirely possible that she does not mean you. Try not to dwell on it.

            Stay safe

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            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.

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            • #7
              Thank you for all of your enlightening posts so far.

              I *do* think this is directed towards me, atleast to a certain extent, because I did get an email from her stating that "hard narcotics aren't the only answer" and some other things along those lines. However, I did suffer without pain meds for a year before I went to a pain management clinic, so I did have intial apprehension about even going the pain med route, but also laying on the couch in my pajamas everyday in pain wasn't exactly "leading a life".

              And I've heard the "just exercise and you'll feel better" bs from other people too. Even my husband, who is a GREAT source of support, I don't think he fully understands the level of pain I deal with everyday. Because many times, I DO put up a "tough face" and "act like everything is okay" when my insides are ROTTING and killing me...when I CAN"T have my favorite foods and I cannot go have a taco and a margarita when I get the whim to I don't want to feel like a total victim, but the feeling remains that its just "not fair" sometimes, not to ANY of us.....and I have CONSTANT reminders of my condition when I see other people laughing, dancing, eating, just doing things that many of US can't do on a regular basis.

              And yes, the frequency is just as bad as the pain, I agree! It is always having to map out the restrooms everywhere I go! The IC is constantly on my mind, in the back of my mind.

              Am I causing drama? I don't know, maybe I am. Maybe I just want to *scream* and have everyone UNDERSTAND. I don't necessarily want sympathy, but I would like some understanding.....that I just can't "get over it" and move on.

              Love to all,
              Hugs and Wishes for Pain FREE days!!,

     ~reducing plastic waste one bag at a time~

              Facebook: Kara Kaiser
              Twitter: Love4Earth

              Me and my Guccigirl... she helps me through those painful hours!


              • #8
                I don't necessarily want sympathy, but I would like some understanding.....that I just can't "get over it" and move on.

                This says it all. I agree with you. You are not creating drama. Your IC has created drama. Your life has turned upside down. Everything you do or don't do centers on avoiding pain.

                I liken it to asking someone, if everytime you drank a cup of coffee, it made your urethra and bladder burn and in some cases your vulva, and it made sex painful and it made riding in a car unbearable, and you had to go pee every 10 minutes and it hurts when you do, would you drink coffee?

                They probably would say no. If your friend is saying things like "narcotics aren't the only answer", it may help for you to ask her to try and be more understanding. Tell her you're having a difficult time coping, and that her saying things like that about the treatment options that are offered by the medical profession, does not help you recovery.

                Being around people that cause you stress is only going to make things worse.

                Something tells me someone else needs to "get over it".

                Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

                Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

                IC Diet: Very diet sensitive, esp. to spices.


                • #9
                  I dont know if I feel like a "victim" persay but sometimes I get the "why me" thing really bad. I look at these people who I really relate to, people with great careers and lots of interests and goals and feel so....jealous I guess that they dont have to deal with pain and all that. BUT you know what? Everyone has their lumps and has to swallow them. It is just like a couple you know who you think has the "perfect" marriage and then all the sudden they get divorced. AND I always, always try to think of the many people who have it way worse than me. I am a history buff and I think of the people in WWII or the people who lived long ago when there was no anasthesia or pain meds.
                  Please dont think I am trying to make light of what your friend wrote. Sometimes people can be shockingly insensitive. It hurts, I know it does. NONE of my friends understand. Not one. So I had to make the choice of giving up all my friends or just taking them for what they are and only talking about my health to the few people who DO care, my mom, my husband, and my mother in law. That is it, period. Oh and all of you! Now whenever anyone asks me how I am feeling, I just so " Oh I am okay. Hanging in there" or something like that. Or fine. because I know they dont really care, they just ask b/c they feel like they have to. My dad is especially bad and it still hurts me sometimes.
                  I am sorry though sweetie. Is this a good friend of yours? One more thing I was going to tell you is that no one knows about my narcotic medications except the 3 people I mentioned above. I dont tell anyone what i take. I used to but that can lead to bad things, including someone stealing my meds. A whole bottle of oxycontin!!
                  How are you feeling? Have you decided to call your doctor yet Try to hang in there!
                  Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!


                  • #10
                    If she did direct it at you, then that goes to show she really does not understand chronic pain, and especially the particularly miserable chronic pain of IC. You are not creating drama or being a victim, you are simply hostage to a really horrible, mean illness with no cure and no remedies that work for everyone.

                    Here are some things you might want to show your friend (if you want to salvage the friendship and not turn away from her, I mean):
                    Interstitial cystitis
                    11310812 JA

                    Pain and depression experienced by women with interstitial cystitis

                    Women with interstitial cystitis experienced significantly increased pain levels and depression during a flare than other populations of chronic pain patients.

                    2000 Women Health 31;4:67-81

                    Rabin, C., O'Leary, A., Neighbors, C., and Whitmore, K.

                    2. Visceral Pain
                    There is something called visceral pain, which is a type of pain you will feel with Interstitial Cystitis and other types of painful conditions. This is totally different. It's kind of vague --- with a more agonizing quality. It's interesting because that message is carried to a different part of the brain than somatic pain. It gets carried to the part of the brain that deals with emotions. So people with visceral pain are more emotional; they get more upset. It's kind of funny --- if you go to your doctors and you look all upset or are tearful they'll get mad at you --- don't they? It's bad enough you've got to cry in front of somebody --- they get ****** off at you for it. But that's a physical quality of the pain and it's not because you are weak. It's where those nerve signals get carried.

                    [Ask your friend if she thinks the rat is trying to be a drama queen or thriving on victimhood]

                    It's kind of interesting. I went to a meeting a few years ago where they were talking about the science of Interstitial Cystitis. When they had patients talk, you could see the doctors didn't believe them. It's really kind of scary. Then they had someone show a video tape. This is a man from England who is able to cause Interstitial Cystitis in animals --- animals never lie. With a certain kind of chemical he gives these little rats an irritated bladder. It's very interesting --- in talking about these little rats, he expressed a lot
                    more sympathy than a lot of Urologists talking about their patients. Then he showed us a videotape of a rat with Interstitial Cystitis. This is a group of doctors and patients watching this video tape. This little rat is kind of writhing around --- obviously very uncomfortable --- you kind of felt sorry for the rat. The rat didn't put on make-up, trying to get dressed up for you. The rat wasn't trying to look nice. The rat was getting worse and worse.

                    Eventually this rat had such bad bladder pain, she kind of curled herself up and bit into her abdomen and tried to eat her bladder. It was really disgusting. We were just saying "Oh God." The doctors were getting grossed out --- and the patients were all standing up and saying, "That's me! That rat knows how I feel." You shouldn't have to do that to get somebody to believe you. It's a very serious problem.

                    A 1987 study conducted by the Urban Institute in Washington, D.C., found that IC makes people so miserable that they contemplate suicide four times more often than the general population and that they rate their quality of life lower than those who undergo kidney dialysis. Nearly 30 percent of IC patients can't work full-time, according to the study.



                    • #11
                      Lori, thank you so much for posting that. I think that maybe that was just what I'd been looking for to convey what is going on with me. I really appreciate it.


                      • #12
                        Do I feel like a victim because of IC? No. Absolutely not. I simply have a disease (several of them actually) that took some life modifications and took some medications and a surgery to get under control -- but it happens to the best of us, so we make the best of it.

                        I don't think your fate is being controlled by doctors. I think you are controlling your own fate by going to doctors who can help you feel better -- and that is a strong thing to do. A real victim and/or drama queen would just sit there and whine without doing anything to better her situation. That is NOT you.

                        And, do my friends and family think I'm being a drama queen or acting like a victim? Well, maybe some of my co-workers, although I do not discuss my health problems in detail with them... I think they just think IC isn't too big a deal, and that my recent InterStim surgery wasn't a big deal, so they probably think I was overly dramatic by taking two weeks off to heal. BUT, I am not really close to any of them, so, while it was hurtful at first that no one even bothered to ask how it all went, I decided the truth is, I really don't care about any of them enough to take what they think to heart.

                        My real friends and family have been nothing but supportive... except for my husband on occasion. We had a fight a while ago, after I mentioned one of my knees was sore, in which he said that maybe I made up pains half the time to get out of stuff, and that he felt he had to cater to me and that cut into his "schedule." To be honest, I got so angry I broke the laundry basket (full of HIS underwear) I was carrying at the time. Of course I don't make up pains to get out of stuff, and he ought to know that ... and as far as his schedule goes, um, what schedule?? He never goes anywhere with friends... the only things he actually does are go to work, watch TV, and surf the net either playing games, getting in political arguments, or reading about investing.

                        He hasn't ever said it again, let's put it that way.

                        But, I guess the thing is, I don't really talk about how I'm feeling much to him anymore. I don't really discuss it with anyone except my doctors now... no one can accuse me of drama if they don't know any drama is happening...

                        *Diagnosed with severe IC in 2004
                        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                        **I am not a medical authority nor do I offer definitive medical advice. 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.


                        • #13
                          You're very welcome, Moonheart.

                          Jen, I don't blame you for having been very angry with your husband - that was an awful thing for him to accuse you of! How unfair.

                          I probably need to clarify what I meant by saying I felt victimized by IC:

                          What I meant by that was, I do feel IC has altered my lifestyle, primarily because up until now, no medication has worked for me (save CyA, which I had to go on a reduced dose of, and now the pain is back somewhat) and no doctors have been willing to give me adequate pain control. So I have been pretty much left to live with the pain, and I have pain every day, and particularly at night. Not being able to sleep especially had an impact on my lifestyle. I get pretty miserable when I can only sleep in 15-minute increments before I get up to pee.

                          But, on the other hand, I am not a victim in the sense of lying down and doing nothing. I have fought, fought, fought against all 11 uros/urogyns I have gone to so far, and brought in studies on new drugs to try, and tried all kinds of weird experimental things. I have tried the best I know how to get better, and I have tried the best I know to have some kind of a life outside of my disease.

                          But up until now at least, my disease has had an impact on my life, I am not exactly the same as I was before IC, so I do feel like a victim in that sense.



                          • #14
                            victimhood 101

                            do I feel like a victim? some days.

                            but the thing that frustrates me the most is that I try to get through the days and keep up my end of the bargain with the world but if I tell folks I hurt they say "oh. too bad" once or twice, but if you say it more than that they are tired of it and past it and moving on and don't you feel better yet?

                            So I hide it. Or I try to.

                            Recently my partner, for the FIRST time, looked over at me in the middle of a social function and quietly said "you're having a bad time aren't you, sweetie". I was shocked! I asked him how he could tell cuz I thought I was keeping it all together that day. He said he was beginning to see the differences in me on bad days - knit eyebrows. distracted. short with strangers. no smiles. slouching. no quick movements.

                            I felt bad that I was "leaking it out" and yet in a strange way I felt so vindicated that he finally was NOTICING that it's bad ALL THE TIME not just when I say "wow, today was a really bad one" when we head to bed.

                            but other days I try to be thankful that I am not worse or that I am not flaring. sigh.


                            • #15

                              Hello, I agree with Sarojini in every way! I also realize how very lucky I am. My husband understands as does my bestfriend and my pain mgmt doctor--everyone else well, I simply do not have the strength or time to care! These 3 people have at one time or another told me I am their hero because I deal with this hideous disease every day--I am so lucky! However, I will say that I do not discuss it with many people--I was travelling with a group of women and when it got to be too much I just bowed out with a brief explanation of IC. The boards are the place where I come to complain the most-lucky again to find my "sisters" who know and have gone through it all but listen anyway! Thank you all!! I have had my days where I cry and say it just becomes so much and I am SO tired of it but I have also learned to stick up for myself esp. with doctors! So victim,no! You do not need anyone in your life who is going to judge you--she is hardly a friend. Chronic pain is the worst but we (all ICers are the best!) --Malone