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Posted on 16. January 2014

Starting a Support Group

By Annaben Kazemi

I frequently hear from IG Living readers about how isolated they feel with their disease. Many ask if there is a local support group where people can gather to share common problems and experiences associated with their immune illness. The desire to be a part of support group where people are able to talk with other folks who are like themselves - people who truly understand what they're going through and can share the type of practical insights that can only come from firsthand experience - is a common yearning.

Because disease states are so rare, I usually direct readers to an online community where a plethora of support exists. But there’s something about meeting and talking face to face with others who share the same concerns about a disease state that’s very appealing. So, I’m also often asked how to start a local support group. Here are some basic guidelines whether you are starting a support group in your hometown/city or online: 

  1. Think about what you want to accomplish. Decide what your group's purpose will be and who you want to reach. You might find it helpful to write vision and mission statements for your group.
  2. Find out whether there are existing national, regional or local groups your group can be involved with. There are several benefits to setting up your support group under the support of a larger organization, if you can. A larger organization can often offer resources and assistance in setting up a new support group. The name recognition that comes with affiliating with a big, well-known organization can give your group more credibility. It can also make it easier for people who need your support group services to find you. Finally, working with a larger organization keeps you from having to “reinvent the wheel” in deciding how the group will operate; you can take advantage of a tried-and-true model.
  3. Decide whether the group will be open or closed. Open support groups are those in which new members are welcome to join at any time during the life of the group. This may also mean that anyone can join the group - friends, family members, etc.  For groups that meet online, this has an additional meaning. Discussions in an online open group can be indexed by search engines. With closed groups, only other members of the closed group can see discussion activity from that group in the feed.
  4. Select a group leader/facilitator or moderator. Picking the right person to lead your support group is of utmost importance. The group leader sets the tone for the discussion, helps members learn how to listen and offer support to each other, and deals with any problems that come up. The ideal facilitator will be flexible, have a positive attitude, have access to needed resources to run the group, possess the desire to do the job and be committed
  5. Recruit members for your support group. Consider how large you want the support group to be before you start recruiting. Generally, it’s best to have a group that’s large enough to function well even when some of the members are absent, but small enough for all the members to feel comfortable. Use referrals, the media and word of mouth to recruit members.

Although support groups are effective for many, they are not a cure-all. Don’t traumatize yourself or others with unnecessary accusations and charges. Be realistic about members who eventually decide to leave the group. It doesn’t mean you have failed. Typically, people move into groups, get their needs met and their questions answered, and then they move on. 

What are your experiences with support groups? Are you currently part of a group? Do you have a suggestion for others seeking a group or seeking to start a group?


Comments (4) -

8:34 AM on Friday, January 17, 2014

Thanks Annaben for the guidelines. It is a good new year's project.  I find just asking people if they have heard of IG Living magazine is a great conversation starter.  Many people are so sick they don't have time for meetings after doing infusion treatments.  I really appreciate the magazines and blogs that I can fit in around my schedule of hospital and doctor visits.  Thanks for the resource and conversation opener.

11:34 AM on Friday, January 17, 2014

MMN is very rare, so an in-person group is impossible. We have online groups on Facebook and a dedicated stand-alone forum, and visit each other whenever possible. I hope you will consider doing a blog post about starting a patient organization, which is more complex than a support group. We are currently discussing that as a next step.

Linda Thornrose
5:52 PM on Saturday, January 18, 2014

I find the support online, especially through IG Living have been a huge benefit to me.  I have been diagnosed with CVID for ten years now and have never met anyone in person with it, so online seems the best available, for me anyway.  I am so thankful for everyone who shares...such a benefit, rather they deal with the same specific DX, or just another chronic illness, the compassion, shared ideas, comfort and encouragement are the best!

Kara Moran
7:11 AM on Monday, January 20, 2014

Thank you, Annaben! Meeting others who understand what it’s like to live with a chronic illness is so important, and your recommendations are helpful. The Immune Deficiency Foundation (IDF) welcomes those looking to connect with others. We provide patients and family members living with primary immunodeficiency diseases multiple opportunities to connect to others going through similar experiences, including sessions at our Patient Meetings, Retreats and National Conferences. In addition, we have IDF Get Connected Meetings, which are just for patients and family members and are held in local communities at a library, coffee shop, church or other community venue. Anyone interested in attending or organizing an IDF Get Connected Meeting can contact IDF for more information: 800-296-4433 or idfmeetings@primaryimmune.org. To see upcoming Get Connected meetings and other events, visit http://primaryimmune.org/events-calendar/.

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