by Janet Dalziel
The CCA’s Facebook group is a diverse, engaged community that offers help and support in real time.
When the Canadian Celiac Association was created 1984 support for people with celiac disease was one of several lofty goals, including advocacy and awareness, for its ambitious volunteers.
Back then, support meant local chapter meetings, national and chapter print newsletters of varying quality and a 1-800 national phone line. Requested materials could take weeks to arrive, the phone was not answered in the evening or on weekends, and volunteers did their best to make contact with members but with limited results.
Today, support from the CCA encompasses the best of the past along with a tremendous effort on social media. If you are a member of long standing and have not yet checked out the CCA Facebook group, you should do so. Traditional membership in the CCA is lagging while membership in the closed Facebook group shows phenomenal growth, with more than three times as many participants in the group as members, with lots of overlap, of course.
This support works for a variety of reasons:
- Myths and misinformation are corrected by our own experts very quickly; people can ask for clarification and are answered virtually immediately
- Recipes are shared and adapted, successes are congratulated and photos are admired
- Users frequently announce new products and where to find them, along with reviews on their palatability
- Restaurant and travel recommendations are requested and quickly received from people with direct experience
- Questions about the safety of ingredients are not just answered with a “safe” or “not safe.” Rather, the answers
usually come with advice on how to become self-sufficient in reading food labels
- Pleas for help in navigating difficult social and family issues provide tremendous insight from a variety of points of view, with practical suggestions and life lessons in dealing with difficult people
- Food and lifestyle bullying or shaming is not tolerated
- The Facebook group bypasses the geographical chapter structure and brings people together
- Everyone in the group can benefit from everyone else’s questions and advice, unlike one-on-one support
People in this group are of all ages, from all over Canada, with quite a few from other countries as well. What unites them all is the need to survive and then thrive, from diagnosis problems through eating for health and pleasure. Many are worried parents doing their best for recently diagnosed children or struggling to get their children diagnosed.
It does not matter how long you have been dealing with any of these issues yourself—there is always something to learn and frequently some wisdom to add to the discussion. The support is ongoing and constant and it goes back and forth: Some days, you are the one getting new information you didn’t know you didn’t know, and other days, you are the one providing needed reassurance to someone else who is just learning.
And some days you are just laughing together at a shared joke. Participants often comment that finding this support group has been a lifesaver for them and their stories bear this out.
We finally have the shared community we always wanted, with real peer support. The experienced want to share stories about what they have learned and how they learned it; they want to help. The newbies are relieved to know they are not alone, that there are answers, that others had similar experiences and can offer advice, that their panic or grief or misery is understood. This is what we wanted when we joined the CCA, to learn and to help and to make it better for all of us. This is what we do. But remember that we can only do it with financial support.
External link: CCA Facebook Discussion Group