Tuesday, September 25, 2012


My local Support Group Meeting is coming up on October 8th and I have to say how much I am looking forward to it! It is so great to be able to get together with other IC patients, share our stories, feelings and support each other. I always leave our meetings feeling so much better than when I got there. We all help each other.  Often we have had excellent guest speakers, while other times, we use the time to just share and talk among ourselves. It’s always a very positive and inspirational experience that I look forward to and gain strength from every time! Even when I don’t feel great and am inclined to skip a meeting, I still push myself to go and never regret it!

 If you don’t belong to a Support Group, I strongly encourage you to see if there is one in your area. The ICA has a list of Support Groups on their website, but if there isn’t one near you, then I want to encourage you to consider starting one yourself. It’s not hard at all and can start out small and build slowly.  The Support Group I belong to was started by a woman who goes to the same doctor as I do. She got the doctor to allow her to put up notices in his office, got the nurses on board so they would tell IC patients about it too. I was the first patient to call her and then another patient called her who just happens to work at the hospital where our doctor is and where we hold our meetings. Together, the three of us got our little group up and running just by our leader putting a flyer up in the doctor’s office. Then we took our flyer around to other urologist’s offices and every single one allowed us to post our flyer in their office. Our leader got our group listed on the ICA’s listing of Support Groups, which helps spread the word too. It’s so easy! Many hospitals will give support groups the use of a meeting room at no charge and that’s what happened with our group.

Slowly our group grew and now, 5 years later, we have a good size group. Not everyone comes to every meeting, as we all know and understand that sometimes we just  aren’t feeling up to it.  We welcome family members, spouses, significant others, men with IC – you name it. It’s a wonderful group and our group leader goes out of her way to make sure we get the most current information and reading materials. She has worked very hard to make our group a success and because of her taking a leap of faith, many IC patients have a great Support Group that has given so much support to so many.  She is a great source of support and inspiration to me and our group and I am forever grateful for that notice I saw in my doctor’s office!

If you are thinking about starting a Support Group, the ICA can help. They have an excellent and FREE Support Group Leader Toolkit on the website to help you get started. If you’ve always wanted to have a Support Group to go to but there isn’t one in your area, then I hope you will consider taking the same leap of faith my Group Leader did and take the first step toward starting a group of your own. I guarantee you won’t regret it and you’ll get so much more back in return. I have made wonderful friends through my Support Group and feel supported and inspired by every single member of our group.

So, think about it, check out the ICA’s Free Toolkit (I’ll include a link) and see if you want to reach out to other patients in your community! You’ll be so glad you did!

I’m really looking forward to October 8th! I would like everyone to be able to feel the same way!


  1. While I've been frustrated by there not being a personal support group in my area, I never would have thought to be the one to start one! But after reading this post, I am inspired! I will look into the tool kit and the next appointment I have with my urologist, I will ask her about reaching out to the other IC patients! Thanks for the inspiration!

  2. Sandy; That is SO great! I hope you will do it and find it to be as rewarding as we do; I know if you do this, you will feel like you are getting so much more back than you are giving! If you need and tips, let me know!