TBI Support Groups – How Important Are They?
TO Support-group or NOT TO Support-group After Brain Injury
by Donna O’Donnell Figurski
How Many Support Groups1 are there?
There are Support Groups2 for almost everything. Probably the most well-known group is “AA” (Alcoholics Anonymous). Some of the other groups are for eating disorders, domestic abuse, mental health, physical health problems, such as cancer and diabetes, groups to enhance relationships, and many others. If there is a problem, there is probably a group for folks to join.
Support groups3 for brain injury survivors and their caregivers, family members, and friends are cropping up everywhere. This is relatively new, since little was known about the seriousness of brain injury until rather recently.
When the troops began to come home from the Iraq war with serious brain injuries, illnesses and deaths , people started to notice. Then when the deaths and illnesses of so many former NFL players came to light – starting with Dr. Omalu’s finding of chronic traumatic encephalopathy (CTE) in the brain of Pittsburgh Steeler Mike Webster during an autopsy in 2002 – more people took notice. What these facts reveal is the need for support groups.
Consider Two Things!
Two things you might consider when searching for a support group are:
- Is it within reach (not to far away)?
- Will you easily be able to get there (can you walk, get public transportation, etc.)?
- Is it large enough for you?
- Too large
- you may get lost
- you may not have any of your needs met
- Is it small enough for you?
- it may be easier to connect with folks of the same interest.
- Too small
- there may not be enough information to share
- Too large
- Is it large enough for you?
You will need to comfort-fit your support group to your needs. If you are unable to join a face-to-face support group, don’t fret. There are many support groups available to you on social media (Facebook, LinkedIn, Twitter, etc.).
You Are Not Alone!
My husband’s brain injury happened in January of 2005. As his caregiver, I went it alone – for years and years. I wasn’t aware of the multitude of people who had a brain injury. I was ignorant that there were millions of caregivers like me. I certainly never realized that there were support groups for caregivers.
It wasn’t until three years ago that I stumbled onto the support-groups on Facebook. I joined many of them, and I have made many good friends there – both virtual (some in other parts of our world) and the closer ones – some of whom I have met in person sharing a coffee or a lunch together.
- There are virtual groups for caregivers. (One is just for spouses or partners of survivors.)
- There are groups for both survivors and caregivers together.
- There are groups for traumatic brain injury survivors; for acquired brain injury survivors; or for survivors with ataxia, multiple sclerosis, or stroke.
Are There Benefits from Support Groups?
Some of the benefits of support-groups are that folks are more apt to understand what you are going through. Because they share similar issues, they are able to offer emotional support, suggest advice, or provide tips that worked for them. There is a veritable smorgasbord of ideas out there in cyberworld. If you are looking for an online group to hold your hand, hear you vent, or answer your questions, I promise you will find it.
Support groups are usually, but not always, beneficial. When my husband, David, had his brain injury in 2005, I had little knowledge of support groups. We went to a local group a few times, but David didn’t find it helpful. In fact, for him, so early in his journey, it was not at all beneficial. He found it difficult to identify with the other survivors of brain injury.
Though David was in poor shape physically and was unable to do much for himself, he still felt that his mental health condition was better than that of the others in the group. Being in the group brought David down and left him with little hope. He asked that we not go back, and I agreed. But, unlike this example, many people rely on support groups.
Support is Always Available!
Because our world supports more than twenty-four (24) different time zones, there is always someone available to talk with 24/7. That is one of the major advantages of belonging to support groups on social media. I am so grateful that I stumbled onto them. I finally knew that I and David weren’t alone.
Just in the United States, there are more than five million people living with brain injury. Can you imagine the number if you counted up all of the survivors of brain injury around the world? Astronomical!
If you are not yet convinced that support groups can be helpful for you, here are a few more reasons.
- They empower you.
- They put you in the driver’s seat to take control of what is happening in your life by helping you to find answers.
- You immediately become a member of a like-minded group of people who accept you, understand you, and is not judgmental.
So, if you feel a support-group would be beneficial to you, by all means find one. They can be wonderful!
Finding a Support Group!
How do you find a support-group to comfort-fit your needs?
If you choose to be a part of an face-to-face support-group, ask your primary-care provider, your neurologist, a social worker, or your church minister to recommend any groups near you. You may also contact the Brain Injury Association of America (BIA-USA.org), International Brain Injury Association (IBIA) and a Brain Injury Association or Brain Injury Alliance organization in your state to identify a support group near you.
If you prefer the comfort of your home (as I do) and you have nimble fingers, open up your computer and find a Facebook group. There are more than thirty to join. I know – because I am a member of at least thirty. I only wish that I had known about the social media support groups when David had his brain injury over eleven years ago. With a support group, we are never alone.
1 Brain Injury Resource Center: Providing Leadership and Creative Solutions in Matters Concerning Brain Injury Since 1985 http://www.headinjury.com/linktbisup.htm
2 Finding Support: After brain injury by Judy Sullivan, B.A. and Janelle Breese Biagioni https://www.lapublishing.com/family-support-tbi/
3 “A Brain Injury Support Group Could Be One of the Best Things That Ever Happens to You” by Barbara Webster, available at the following website http://www.brainline.org/content/2011/08/a-brain-injury-support-group-could-be-one-of-the-best-things-that-ever-happens-to-you_pageall.html
Daddy’s Home by Carolina Nadel https://www.lapublishing.com/ptsd-veterans-children/
“Suicide: In military personnel and veterans” by LaShanta Petroski-Ackley, L.I.C.S.W., Marilyn Lash, M.S.W., Maureen K. O’Connor, Psy.D., ABPP-CN https://www.lapublishing.com/veterans-suicide-ptsd/
“Sports-Related Traumatic Brain Injury”, located at-All About Traumatic Brain Injury http://www.allabouttbi.com/sports-related-traumatic-brain-injury/
“Stress Resilience: For caregivers after brain injury” by Janet Cromer, RN, MA, LMHC https://www.lapublishing.com/brain-injury-stress-caregiver/
Essence of Interdependence: Building community for everyone by Al Condeluci, Ph.D. https://www.lapublishing.com/condeluci-interdependence-book/
About the Author
Donna O’Donnell Figurski, whose life revolves around traumatic brain injury (TBI), is a wife, mother, granny, teacher, playwright, actor, director, picture-book reviewer, radio host, speaker, photographer, and writer. As a brain injury advocate, Donna has published articles in many brain-injury-related magazines on the web; has written chapters included in two books; writes a blog called “Surviving Traumatic Brain Injury”; is host of her international radio show, “Another Fork in the Road,” online on the Brain Injury Radio Network; is a speaker concerned with survivors of brain injury and their caregivers; and is the author of a completed memoir, “Prisoners Without Bars: A Caregiver’s Story,” which is searching for a publisher/agent. Donna resides in the desert with her husband and best friend, David, who had a traumatic brain injury in 2005. To learn more about Donna, please visit her websites.