For some those words bring thoughts of comfort, others of anxiety.
What is a disease specific support group? Support groups usually involve education, sharing ideas and “war stories”, and finding community for those diagnosed with a specific disease, their family/loved ones/caregivers.
A support group is NOT a bunch of people sitting around feeling sorry for themselves or group counseling. (Not to bash group counseling. Many people with neurological disease benefit from counseling, but that is not the point of a support group.)
For some going to a support group can be difficult. First of all, the attendee must recognize that they have a connection to the disease the group represents. Then they must admit that they could benefit from finding a community of others that are also self-identified as a member of that disease’s community. This takes a HUGE amount of vulnerability, which makes many people nervous. It takes guts to just show up to a group. But once a person shows up a few times, they begin to get comfortable with the format and meet other people in similar proverbial boats, doors and mouths open. It truly is beautiful.
Coming from a facilitator’s point of view, I loved being apart of the stroke support group at my hospital. I got to see former patients, how good they were doing. And watch those newly diagnosed become comfortable in their new skins.
Support groups are not for everyone. If the idea makes your skin crawl, there’s no point in forcing yourself to go. You’ll just be miserable. Maybe revisit the idea at a later time. You may be ready at another point.
Would you like to join a disease specific support group? Here are some links to get to you started. I would also encourage you to contact your local medical centers. They often host these events.
The brain injury ones seem to divvied up by state with no national database.
There are also online options such as:
Or if you’re active in social media, search your disease on your favorite social media site. I follow several support circles on Facebook and several individual advocates on Twitter.
Go forth. Share. Receive.