“I hated support groups. I wasn’t a big fan,” he says, adding that he felt unsatisfied with the format of having a medical professional facilitate a roomful of people with brain injuries without knowing how they really felt. “They were coming at it from a different perspective of learning about brain injury as opposed to having a brain injury,” he says. He decided he wanted to change this clinician-led model and facilitate TBI support groups himself. He became a board member then vice president of the Brain Injury Association of New York State, and for the past 18 years, he has worked as an outreach coordinator and peer mentor for individuals with TBI at the Brain Injury Research Center at the Icahn School of Medicine at Mount Sinai in New York City. He currently facilitates three TBI support groups at the hospital. “As a person with a brain injury, I’ve found that it gives more credibility to the facilitator if they know what the people in the support group have gone through,” Pruce says. People with first-time brain injuries or those who have lived with a brain injury can often feel isolated, frustrated, or confused about their symptoms. Joining a support group can help survivors of brain injury, including their families, friends, and caregivers, gain valuable knowledge and learn about resources from other attendees. Support groups can also provide a sense of community and identity for survivors who have struggled with their brain injuries. According to the Brain Injury Association of America (BIA), one of the largest brain injury organizations in the country, about 2.5 million TBIs occur each year. The organization has branches in 50 states that oversee numerous support groups taking place in hospitals and churches and at health organizations. Experts say that these groups are typically facilitated by social workers, medical providers, or TBI survivors themselves. Here are five ways experts say that support groups can benefit people with brain injuries and their families.
1. Support Groups Help People Feel Less Isolated
Pruce says that many people with brain injuries, especially those who have had one for the first time, can often feel alone when it comes to living with newfound symptoms, which can range from issues with cognition to physical disabilities. “The whole concept of having a traumatic brain injury isn’t really on anybody’s radar until it happens to them. When it happens, you feel like you’re the only one this has ever happened to, so you feel very alone,” he says. Support groups allow people with brain injuries to see that there is a large community of brain injury organizations and people with TBIs who’ve had similar experiences. Fellow survivors are willing to share their stories and provide advice on living with a brain injury, he says. “At the end of the day," Pruce says, “it’s about helping people to accept and move on but with support. And there’s a lot to be said about not feeling alone.”
2. Support Groups Provide Practical Knowledge, Resources, and Networking
Maureen Cunningham, the executive director of the Brain Injury Association of Missouri, says that another benefit of support groups is that survivors are able to gain a wealth of practical and medical knowledge and become familiar with available resources from other survivors who may have been living with TBI for a longer period of time. Cunningham, who rotates between 15 Brain Injury Association–affiliated brain injury support groups across Missouri, attends about 12 to 15 group sessions a year. She says she’s encountered many survivors who have shared advice on such matters as how to open cans or doors, what disability services are available in the area, or which restaurants are best suited for people with noise or light sensitivity. Survivors with TBI can also help one another to learn what various medical terms mean or to make more-informed decisions about residential care, Social Security disability, or insurance eligibility for Medicare or Medicaid. “When brain injury survivors have information from other survivors and families, they can make more-informed decisions that work for them,” she says.
3. Support Groups Answer Questions That Doctor’s Can’t
Maureen Eisenberg, 53, TBI survivor and former facilitator of the Heads Up Support Group for brain injury at the Shirley Ryan AbilityLab in Chicago, says that support groups offer a place where survivors of TBI can get information they may not get at a doctor’s office, such as referrals to nontraditional medical treatments or what kind of physical therapy stretches work best. Eisenberg sustained her first brain injury after falling in the shower in 1988. She was diagnosed with a brain tumor 18 months later and continues to experience dizziness, vertigo, and issues with spatial and depth perception, despite having the tumor removed in 1991. She says that support groups provide a safe haven for survivors to ask questions about their symptoms without fear of being criticized. During her time as a facilitator, she met many attendees who shared horror stories about physicians or medical providers who didn’t treat them with respect when they asked questions about their brain injuries. “We each gave examples of when doctors laughed at us,” Eisenberg says, adding that there are no stupid questions in support groups. Cunningham, too, says that she has met survivors in TBI support groups who have said their healthcare providers didn’t understand their brain injury and thought they were faking their symptoms. She advises support group attendees to jot down notes or questions into a journal and bring it to their medical appointments so that they can remember everything they wanted to talk about with their doctor.
4. Support Groups Provide Comfort for Families and Caregivers
Support group facilitators say that caregivers can often experience great emotional and psychological tolls when looking after someone with a brain injury. Families must learn to adjust to having a spouse, sibling, or child who could have a completely different personality than they did before their injury. “Their life is turned upside down by someone with a traumatic brain injury. They don’t have the same physical trauma of the injury, but in terms of their lives being changed forever, they go through a lot of the same things,” Pruce says. “The family members of the person with a brain injury have to love a new person and say goodbye to the person they knew before the brain injury,” Cunningham says, adding that full-time caregivers often struggle with some of the behavioral changes that may come with brain injuries, such as mood swings or public outbursts. She and Pruce agree that families also face added financial burdens when dealing with insurance or caring for someone with a brain injury who can no longer work at the same level as before, especially if the injured family member was the household’s main breadwinner. Cunningham cites one example of a survivor she met who impulsively made credit card purchases through a home-shopping network. “The survivor put the family in financial strains and bankruptcy because the person with the brain injury couldn’t manage or control spending,” she recounts. Individuals who come to caregiver-specific support groups are able to talk about their concerns about their loved ones or listen and learn from stories that others share.
5. Support Groups Help Survivors Regain a Sense of Identity
Many people with chronic TBI feel that they have lost a part of their personality following the injury, experts say. Kristen Dams-O’Connor, PhD, an associate professor of rehabilitation medicine and neurology and Director of the Brain Injury Research Center at the Icahn School of Medicine at Mount Sinai in New York City, says that being in a support group provides a community and a supportive platform for people with TBIs to test out their new identity. “There are people who, after a brain injury, think that their life isn’t going to be good again. Support groups allow people to develop their identities, be a part of a community, and see the bright side of those possibilities,” she says.
Making Lasting Impressions
Pruce says that facilitating brain injury support groups is cathartic because it has helped him be more transparent about his own TBI, and other survivors are receptive to that. About a month ago, he was standing at a bus stop when a man on a bike recognized him. The man told him that about four years earlier he had been hit by a car while riding his bike and had a TBI. After attending one of Pruce’s support groups, he decided to get back into bicycling. “The purpose of support groups is not just sitting in a group and talking for an hour then leaving — it’s the relationships you make, getting education about what’s going on with you, and how to help yourself and explain it to your loved ones,” Pruce says. “I think it helps you to move on from this traumatic experience. Just because you have a brain injury doesn’t mean your life is over.”
