Affiliating Your Group With Others Can Help

Managing a support group is not a casual endeavor. It takes time and a good deal of preparation to make sure that your group is truly helpful and supportive. Some groups are created independently while others are an offshoot of a national organization. The advantage of the latter is that group leaders generally receive training and materials to help them set up their groups, manage money and run day to day operations. On the other hand, independent group leaders must create everything from scratch! Our preference is for creating a physician affiliated group whenever possible provided, of course, you have someone who supports your cause.

(1) Organization Affiliation

Many national organizations facilitate local support groups provided your group falls within their topic area. If, for example, you want to focus on pelvic pain, you could approach organizations such as the American Chronic Pain Association, the Endometriosis Association, the Vulvar Pain Foundation among others. There is NO national group that facilitates local IC/BPS support groups.

(2) Independent Support Groups

Most traditional “in-person” groups function informally, much like a private club or social group. These are called informal non-profits. Normally, there are one or two group leaders and other volunteers who help out. These groups require very little funding, normally acquired with a simple jar placed on a table at meetings. Because banks rarely give accounts to these groups, the money is entrusted to one person. These groups meet in libraries, churches, local coffee shops and other public locations.

(3) Physician Affiliated Groups

Physician affiliated support groups have the benefit of guidance from a sponsoring doctor. They usually use meeting facilities offered at no cost by their medical center. While some care providers underwrite the expenses of the group, others conduct their own fundraising again, usually, using a collection jar during meetings. These groups have a wider variety of potential speakers from your medical center and may have the opportunity to create educational seminars for health care personnel. Occasionally paid staff assist.

(4) Internet Groups

Most Facebook groups are independently run and are run by a leader and several group moderators who help facilitate discussions. The ICN, for example, has a team of support group leaders who moderate our support forum. Today, you can find hundreds of support pages on Facebook or Google plus. These come with their own challenges, including some serious litigation. Several years ago, one major internet provider lost a lawsuit when a member committed suicide while in a chat room. The judge ruled that the other members in the chat room had offered inappropriate counseling advice for which they were not qualified. Thus, these group leaders must understand that this is NOT a casual undertaking. They must also be VERY CAREFUL if suicidal discussions arise. Facebook provides a suicide reporting service, if necessary.