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Online Support

© Lisa Griggs

Support is an important part of healing. While there is no physical cure for Interstitial Cystitis, emotional support and encouragement can go a long way toward improving your situation. Friends and family are generally the first place we turn when we need help. Unless you have a friend or family member who has experienced IC or a similar disorder, it is common to feel that no one fully understands your situation. When this is the case, many IC patients seek out other patients for emotional support. Many times, for many patients, a support group is the answer.

Finding a support group can be as easy as asking your urologist about the local group in your area. On the other hand, many cities still don't have support groups specifically for IC patients. Some of us have trouble with long car rides, so traveling even a short distance might be out of the question. In this case, you might consider looking for your support group online.

The Internet offers an abundance of support, from chats and message boards to mailing lists, and all have their good points. The convenience of logging on and enjoying the conversation, any time of the day or night, is appealing to many patients. Patients with severe pain, those who are restricted in their activities, or people who simply prefer to meet others via computer are perfect candidates for this type of support group.

As a member of several support groups myself, I can share with you my experiences. All have been positive, although each type of group that I have joined (scheduled chats, message boards, and mailing lists) have their good and bad points.

Scheduled chats are very enjoyable for me, but often my schedule does not permit me to attend the events. Chats also tend to stray off topic frequently, with small groups of people talking privately, some feeling left out. I'm sure that this is not the case with every chat I have ever attended, but it did seem to be a common problem.

Message boards are another great way to get encouragement, information, and answers to your questions. The problem here is the delayed response, but this type of group can still be a lot of fun.

My very favorite way to communicate with other patients is through mailing lists. Subscribing is easy, and there are many health related lists at web sites such as www.onelist.com. Each message is delivered right to your inbox, to be read at your convenience. Onelist also provides archives and information about the list, such as a listing of all subscribers and some information about each person. In this way, you may send mail to all members of the list, or you may choose to talk to others privately.