Too share or not to share

[L. Thomas]

I sometime think I should not post. I know so many of you have such incredible pain, not only from IC but also from lack of support from family and friends. There are those that can’t even find a physician that has experience or knowledge of IC. You have been treated insensitively and made to feel you are “mental”. You have lost jobs or had to stop work, or your marriages have suffered. It just seems the quality of your life has been sacrificed to IC.

I just worry that my posts may be discouraging rather than encouraging. My IC has been managed so successfully that I am afraid I will discount your feeling. It’s sort of like chocolate, a little is all you need.. Too much and it causes a bunch of trouble.

My purpose is not to discourage but to encourage. Poster seem to come and go quickly. I am not sure if it is because they have found success or if it is because they feel defeated.

I can empathize with many of your feelings. But if sharing my success is causing defeated attitudes I am defeating my purpose. I know that my solution is the one that works for me but it is not the one that works for everyone. Someone would be really rich if that was the case.

Please let me know your feelings.

[waterflow]

:kissing: Naw, keep sharing. Everyone has good and bad in this I think. Some will be discouraged by what any of us post about but many others will be given hope. I think some people just post for a while and move on that is all. Maybe some have gotten better or maybe they found a different kind of support group. Keep on posting. :smile tee

[ICNDonna]

Sharing our successes is very important. It gives others hope that they will also find effective treatment options.

Donna

[leelee88]

I agree with the others.. Keep posting if you are having good days with IC, for me it would be nice to hear..Alot of us post on our bad days and how painful it is.. I for one would love to hear more positive stories, it would give us hope..So please keep posting:smile tee

[ihurttoo]

Please post whenever you feel like it! There are lots of depressing stories here, and lots of hopeful ones, but both have their place. If I didnt read the depressing ones, I wouldnt want to post on my terrible days. But, since others do, it makes me feel like others will understand. But, the success stories are important to, b/c then it gives us hope that we will find something that will help us too. One person's success story (or even several) arent enough, b/c no group of ICers responds to the same things. What worked for you might not work for 20 others, but then one day, the 21st will come along, read your posts and try it, and BAM, they will have finally found something that works for them too!

Every story and every post is important, and that includes yours! :)

Hugs,
Amy

[Roxie2007]

Please keep sharing. I know I need to hear there are those who get better and are leading normal lives. If we don't have hope IC will over take us all together. I've gone through my fare share of depression from IC.....so please keep posting and tell what you are doing and how you are keeping healthy. Roxie

[humpieumpumkin]

Hearing success stories gives me hope! Please continue to share, people who continue to post even when they are in remission are such great support for us. THanks!

Erika:smile tee

[kadi]

Agree with all the above posts!

[green_the_fish]

Please, don't stop posting! Newbies really need to see success stories, or else they start thinking no one ever gets any better. I can promise you I have never, ever felt bad after reading any of your posts.

I think we need more people on the ICN that are willing to stick around after they feel better. I know that I have very, very mild IC symptoms the vast majority of the time now. And I am glad to tell people that, because it means that I survived some of the worst my IC had to throw at me, and didn't give up. You're not discouraging, you're a survivor. You're proof that not everyone with IC is doomed to a life of pain. Please, don't stop posting.

[SharonA]

What they ^ said. :) :) :) Stay with us...We all need to hear when things are good so we can rejoice with you and when things are not so good so we can lend our support.

[vm]

I had the same dilemma early on when I was feeling good. I worried that some people might think I was bragging about feeling good or shoving it in their faces.

I know that the one thing that kept ME going when my symptoms were so bad and I felt SO overwhelmed were reading the postings from people who felt good and had found relief. It was like a light at the end of what felt like a very long and very dark tunnel. I needed those posts desperately.

I stay b/c of that. I also stay b/c I promised myself during the time when I felt so awful that if I ever felt better that I would not leave. I would GIVE BACK to the ICN what was given to me for free. That is why I have stayed over the years and why I think it's a very good thing that you have stayed, too. It's that whole "pay it forward" thingy. :)

[L. Thomas]

Now I know what I needed to know. My IC was diagnosed literally before I knew I had it. It's not like my knee problems...pain I have lived with since I was 18 (but thanks to TKA and 4 months I can't believe the difference!).. I knew hearing positive stories with knees were encouraging to me. I thought it would be the same for IC but I just wanted to check.

[chloeriley]

i def agree please keep sharing it gives us all hope!!