Going through life with a brain injury can be a remarkably difficult experience for a brain injury survivor. Life has changed, often in many dramatic ways. Sometimes utilizing the most basic of skills, such as using the restroom or remembering to turn off an oven, can present the most complex of challenges. Life is often just as hard (and in some aspects can be even harder) for the survivor’s family. Everything has changed for them, too. Family members often find that new roles are now required of them and that new stressors now confront them at every turn. A wife may now find herself serving as her husband’s primary caregiver. A brother may now necessarily be conscripted as his sibling’s chauffeur to constant doctor’s appointments. On top of all this, there is so much to learn in a field with which both survivors and family members almost always have little to no previous familiarity. This can make for an incredibly lonely experience. Survivors and family members may ask themselves, “Is there anyone else in the world who knows what this feels like?” While the brain injury survivor is a patient in an inpatient rehabilitation program (a very common experience in post-injury life), the survivor can often rely upon the camaraderie of fellow patients. Family members may become friendly with the family members of other survivors and chat on a regular basis. Both survivors and their families will have regular contact with staff who are able to provide support and knowledge. However once the survivor discharges from that inpatient facility, he or she suddenly has little to no contact with other brain injury survivors. Families lose contact with each other and no longer have available as an option just popping in to a therapist’s office for a quick question. This is when the brain injury experience can be its most lonely.
Support groups can help fill this gap. Support groups are groups of individuals with similar experiences that meet on a regular basis to discuss those experiences. Individuals may offer suggestions and advice or just provide a shoulder to lean on. Support groups exist for a wide selection of health-related issues ranging from living with cancer and diabetes to coping with grief, struggling with substance abuse, and of course, rebuilding one’s life in the aftermath of a brain injury.
There are two primary types of support groups that are most relevant to brain injury survivors, namely stroke support groups and brain injury support groups. Stroke groups tend to be more common than brain injury support groups, though in most larger population areas one will be able to find a brain injury support group in addition to stroke support groups. Among stroke support groups, there is a small subset that are specific to aneurysms (though survivors of aneurysms and their families are of course welcomed in a general stroke support group). Support groups are often run out of hospitals, rehabilitation facilities, community centers and houses of worship. If a group’s meetings take place in a hospital, usually the survivor does not have to be a patient (past or present) of that particular hospital in order to attend. In addition to the aforementioned support groups, there are support groups designed to address certain specific symptoms of brain injuries. For example, there are aphasia support groups, apraxia support groups and memory support groups.
Each support group tends to have its own individual program and essential dynamic. Some provide more educational content while others tend to offer more of an emotional/social support program. Some are survivor oriented, others family oriented and still others are oriented to both survivors and their families. If you do not feel suitably comfortable at one group, you can always attend another group. Also, there are available some online support groups necessarily better suited to those who have difficulty leaving their homes. Some survivors and families will even create their own groups when confronted by a lack of groups tailored to their specific needs in their vicinity.
Below are a few links that may aid in finding a support group:
For brain injury support groups, click on your state affiliate of the Brain Injury Association of America and scroll to the Support Groups section:
Stroke support groups:
In addition, the American Stroke Association has a family support phone program called the Stroke Family Warmline. The Warmline phone number is 1-888-478-7653.
Aneurysm support groups:
Learn about brain injury treatment services at the Transitional Learning Center: tlcrehab.org