Interstitial Cystitis (IC) Support Group

I am very discouraged right now. . and it has nothing to do with my medical problems. Right now I am facing a diagnosis of ALS, and that does not have me discouraged. This was my place of refuge for dealing with my illnesses, and everyone else is too busy pointing out how wrong they think anyone is to actually be supportive.

I am discouraged because I feel like I can gain no support from this group. Everyone is too busy telling me that I am wrong for taking medications and continuing to manage my health care with doctors, and needles, and pills.. even though I have tried all of the alternatives with nothing close to success. I get speeches on PT when I have said over and over again that PT did not work for me. I get speeches on going off all medications and doing things the "natural way" to "cure" my IC symptoms, even though the people saying these things have never experienced any of the problems I have or even asked me about what I have or haven't tried. When people aren't preaching to me they are sending me message talking about how they've been in remission for months or years, and then they decided to eat tomatoes. They want me to join in on a pity party. I can't do that. When you purposely and knowingly set yourself back over a piece of red fruit I have no sympathy for you. I know that is really harsh and not very nice, but when I struggle so hard on a minute-by-minute basis and I see others doing the same or worse.. I just can't feel sorry for you when you do something that you know is going to make yourself sick. And then those same people preach to me about what I'm doing wrong.

I just don't understand most of the people on here anymore. I see people telling others the craziest things. There were even comments about probiotics. My father is a Crohn's disease patient. He has had almost all of his intestine removed. He only has less than a foot of it left because it would atrophy. He either removed it or he died. Probiotics keep his body working. If he wasn't on them he would have more spots that would atrophy. He can die without them. I take probiotics one week out of every three months to regulate my digestive system. I have severe muscle spasms, muscle rigidity, and muscle pain. The probiotics help me to be able to have a working digestive system when my muscular problems would not.

I appreciate that everyone has there own opinion. Everyone is entitled to that, but just because you are.. it doesn't mean you should offer a general judgement. Get to know the person and their health problems before you start telling them what is good/bad or what they should/shouldn't do for themselves. And you can offer advice and support without preaching towards people. And when you read something you have a problem with.. do not attack the person.

We all come to this group for support. So why can't we support each other? There is something seriously wrong when I am more upset by how people are behaving on here than a diagnosis of ALS. I want to be able to come to this group and share that I have something horrifying going on. My loved ones are devastated, and I am devastated because I can't take their pain away.. not to mention the excruciating amount of pain that I am in. I need support for that. I need to talk about how my muscle issues are affecting my bladder disease. I need to talk about how I can barely hold myself together long enough to crawl out of the bed an into the bathroom. I need to talk about how I want to be a husband to my wife, but can't.

I don't think this is the place for me to be anymore, because I can't do any of that. All I get is judgmental, preachy, and ridiculous responses. And then everyone else gets angry from something someone has said to a person that isn't them.. they snap and the situation gets worse. I causes stress. None of us should have to deal with such petty and stressful situations in a support group. I need help. I need support. That doesn't seem to be the aim of this group anymore.
Posted on 10/27/09, 05:10 pm