TO Support-group … or NOT TO Support-group After Brain Injury

Concerned men comforting another in rehab group at a therapy session

There are support-groups for almost everything. Probably the most well-known group is “AA” (Alcoholics Anonymous). There are groups 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. Groups for supporting 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, 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.

Two things you might consider when searching for a support-group are location (Is it within reach? Will you easily be able to get there?) and size (Is it large enough or small enough for you? Too large – you may get lost and not have any of your needs met. Too small – there may not be enough information to share, but it may be easier to connect with folks of the same interest). You will need to comfort-fit your support-group to your needs. If you are unable to join an in-person support-group, don’t fret. There are many support-groups on social media.

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, and 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 from across the world) and the ones nearer, some of whom I met in person to share 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. 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.

Because our earth supports more than twenty-four 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, and 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!
So, how do you find a support-group to comfort-fit your needs? If you choose to be a part of an in-person 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 (BIAUSA.org) and locate your local chapter for your state to find a support-group near you. But, 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, you are never alone

 

 

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Donna Figurski
About Donna Figurski 4 Articles

Donna O’Donnell Figurski is a wife, mother, and granny. She is a teacher, playwright, actor, director, writer, picture-book reviewer … and, on January 13, 2005, became the caregiver for her husband and best friend, David. Donna had never heard of “TBI” before David’s cerebellar hemorrhage. Now TBI invades her life. Donna spends each day writing a blog, called “Surviving Traumatic Brain Injury,” preparing her radio show, “Another Fork in the Road,” on the Brain Injury Radio Network, and searching for a publisher for her completed memoir, “Prisoners Without Bars: A Caregiver’s Story.”

Donna published four stories with Scholastic, won Essex County’s 2013 Legacies Writing Contest, and was recognized for her children’s book review column, “Teacher’s Pets,” by the National Education Association. Donna has published articles about brain injury in several online magazines; she also has three biographies and two chapters in press (due out in 2016). But, Donna’s greatest accomplishment is caregiver to her husband, David.

Here is a link to Donna’s blog: Surviving Traumatic Brain Injury (survivingtraumaticbraininjury.com)