Communities of Support

Lauren Moore, Marketing and Communications Manager, BIAA

Living with a brain injury can be isolating. Many of the long-term symptoms that brain injury survivors experience, such as cognitive fatigue, difficulty with vision or hearing, speech problems, unpredictable headaches or migraines, or becoming overwhelmed in dynamic settings, often makes it difficult to navigate social situations or return to a beloved hobby or career. There is also an all-too-common lack of understanding about how a brain injury can change a person’s abilities, limits, and comfort levels, which can lead to frustration and make life after brain injury a lonely experience.

“It’s just so hard to create a community after something like this happens to you,” said Theresa Galvin, a brain injury survivor from New York. “I lost most of my community in the process, and it was hard for me to create community in my world, where people don’t understand what I’m going through. I went from being a functioning person, to not so much, to not being in the world at all.”

But when she joined Life After Concussion, a monthly virtual support group, she felt a sense of belonging.

“People who haven’t endured a brain injury don’t understand. People in my family don’t get it, my friends don’t get it, but these are my people,” she explained. “If I say something like, ‘This strange thing happened to me and it only happens to me,’ people in the group will say, ‘Oh, this happens to me all the time.’”

Being part of a support group for people with brain injury offers survivors the chance to realize that despite their frustrations, losses, struggles, or negative experiences, there are others out there who can understand and empathize – and that they’re not alone.

“It seems to be a real theme in our experiences – people with brain injuries don’t feel seen or heard,” shared Randi Levy, a former middle school teacher and brain injury survivor from Maryland. “I think it’s very powerful for people with brain injury to realize they’re actually not alone – because you’re not.”

Bryan Pugh, Executive Director of the Brain Injury Association of Maryland, who facilitates Check In Chat, the support group that Levy belongs to, said the knowledge that “you are not alone” is, in his opinion, the biggest benefit of being part of a support group.

“You are not alone in your experiences. You are not alone in your frustrations. You are not alone after the loss of family, friends, and work colleagues,” Pugh explained. And, because the group consists of other people with brain injury, members don’t have to explain things like fatigue, confusion, or angry outbursts. “You just see nodding heads,” he pointed out. “Hearing about others with similar experiences and being able to speak your truth without judgment reduces feelings of isolation and stigmatization.”

The idea of walking into a room full of strangers and talking about a traumatic experience can be daunting. But those who have found “their people” in support groups say taking the leap is worth it.

“I know it can feel quite scary to enter a room full of strangers and talk about the most vulnerable part of our lives, but once I attended and came to understand that everyone in the room knew exactly what I was experiencing, I no longer felt alone,” said Angela Leigh Tucker, a member of BIAA’s Advisory Council and brain injury survivor from North Carolina.

Finding the Right Fit

Support groups are not one-size-fits-all. Some groups meet virtually, while others gather in-person. Some groups are geared toward a specific demographic: women-only support groups, support groups for veterans, groups for young adults, LGBTQIA support groups. Structure varies from group to group as well: some are more free-flowing, while others offer a bit more structure or someone to facilitate the meeting.

Ali Rheaume, who started Life After Concussion in October 2022, said she was motivated to start the group because she wanted to create a support group that had a growth mindset. “It can be difficult to attend support groups if people only complain the whole time, but the struggle is also so real,” she noted. “So, the goal was to offer a space where people could be real and vulnerable, receive love and encouragement, and also be provided with strategies and examples to help them move forward in their journeys as they are ready to.”

Catherine Hes, another member of Life After Concussion, said that positivity-focused growth mindset helped her shift her thinking about her brain injury. “I got brave enough to try new things, and if the experience didn’t go well, I didn’t berate myself. Instead, I just used Ali’s phrase: ‘I am not ready yet,’” she explained. The positive mindset exhibited by Rheaume and her fellow group members has helped her be more appreciative, celebrate her wins, and recognize the progress she’s made. “With this thinking, I was able to manage my symptoms with more self-kindness and grace, rather than embarrassment,” she said. It even helped her develop strategies to more comfortably travel via plane to visit her son, plan and host a birthday party for a friend, and embark on a new career.

Sharing Solutions

Another benefit beyond the camaraderie and understanding that comes from gathering with fellow brain injury survivors is the sharing of strategies and resources.

“When we find a good doctor, we share that. When we find a good community center, we share that. We become resources for one another. We’re veterans of a very particular type of injury,” explained Betsy Bizarro, a brain injury survivor from Massachusetts.

Levy shared that a fellow support group member gave her the idea to organize her weekly schedule using a white board, after her previous attempts to use sticky notes and a planner weren’t helping. “When he suggested it the first time, I was still in a lot of denial, but it worked,” she said. “It helps me to organize myself.”

Bizarro believes that providing help and support to fellow brain injury survivors is part of her healing process. “Being able to support other people in their healing journey gives us purpose,” she said. “We want to be useful, we want to be able to help others, and being present in a support group is something we can still do.”

Branching Out

While support groups are an invaluable resource for camaraderie and community, they’re not the only resource. Support groups like Life After Concussion and Check In Chat have led members to other groups and programs that have helped them explore new interests, hobbies, and practices. Bizarro, for example, runs a weekly meditation group, which Galvin joined and considers a game-changer for her brain injury-induced migraines. “My migraine activity has decreased as I continue to immerse myself in this mindfulness and meditative practice,” she shared.

Tucker shared that her support group led her to a writer’s group specifically geared toward people with brain injury.

And Pugh shared that several group members use art as therapy, which inspired some of the members to apply for and attend an arts festival to showcase their art and demonstrate what they were able to do with their brain injury. And, he added, “Several participants have started businesses, gone back to school, gotten their drivers licenses again, gotten their EMT certifications back based on the encouragement of the group.”

If you would like to be connected to a support group in your area, reach out to the National Brain Injury Information Center at 1-800-444-6443. You can also find a list of virtual support groups at biausa.org/supportgroups