Benefits from a Brain Injury Support Group - A Survivor's Story

by BreneƩ

As life continued after experiencing a brain injury it was filled with challenges. These challenges were not only physical and cognitive, but emotional as well. It seemed I was destined to live a life of frustration because there was not a family member or friend that really understood what I was experiencing.

Years passed on, my family and friends listened to stories of the challenges and frustrations that filled my life. However, as their faces saddened and they looked away, it was obvious they did not know how to relate to or understand me. Often the words they offered seemed unrealistic or uncaring. Those significant to me seemed focused on finding ways to get me back to the way I used to be before the brain injury. Many times I was told solutions to my deficits were possible if I just tried hard enough or if I quit dwelling on the problems life now presented.

There were times my significant others seemed so focused on finding solutions they tended to ignore my efforts to adapt with compensatory techniques. Although I was pleased that I had found ways to do some tasks and activities I had before the brain injury, their desires made it difficult to find satisfaction with compensatory techniques I had developed. Trying to overcome life's challenges seemed an endless uphill struggle.

Relationships with significant others seemed strained by the absence of shared experiences and challenges. The significant others continued to spend time with me, yet, I began to feel rejected or alienated. The love, considerations, and concerns expressed by significant others were appreciated, but I continued to feel alone and isolated. Depression and decreased motivation developed without the companionship of others who could understand and relate to life's challenges and frustrations.

Counseling helped lessen the desire to give up on life. However, several years after the accident, an unplanned event lead me to discover the OKC Support Group for Head Injury Survivors. Discovering others who were experiencing challenges and using adaptive techniques similar to mine was uplifting and motivating. Suddenly I was not alone in the world, there were others like me!

In 1993, I read an article written by Sharan L. Schwartzberg, an occupational therapist. She had conducted a study to discover the benefits provided by head injury support groups. Upon the completion of her research, she reported that head injury support groups provide opportunities for the fulfillment of the following needs:

  1. Telling one's own story and listening to others can help confirm that life's challenges are genuine and legitimate after a head injury.
  2. Head injury survivors often seek to develop compensatory techniques that allow them to appear free of disabilities. Often feelings of being different and inadequate develop if the survivor is unable to create or maintain a successful "disguise." Discovering a group of individuals with similar experiences can often help the survivor with accepting limitations & disabilities. Acceptance of deficits can allow one's focus to become directed toward developing and expanding remaining abilities, thus, creating opportunities for self-actualization or satisfaction with life.
  3. At times a group of survivors may become somber as a member expresses anger, frustration, or disappointment about experiences. Laughter may replace the frustration when other group members share similar situations & mishaps. Therefore, grieving & laughing about daily situations with others, who can relate, offers a stress relief.
  4. Many head injury survivors use a great deal of energy making attempts to hide deficits. Using compensatory techniques may be accompanied by a fear of failure or feelings of imperfection. Recognition of others making similar efforts may allow feelings of normality, comfort, and acceptance to replace the survivor's fears. Thus, being accepted by others with similar deficits can provide a recess from hiding one's disabilities.
  5. Each group member seems to understand the frustration and amount of energy used as one works to develop acceptance of limitations and compensatory strategies. This understanding and support can provide hope and encouragement as a survivor strives to develop satisfaction with life. The support from the group seems to promote the survival of the survivor.
  6. The reality of challenges faced by head injury survivors is often reinforced as the group members give, receive, and discuss practical solutions to problems. Frequently another member of the group who has struggled with a similar situation can offer alternate solutions. Although one member's solution may not work for another member, it may stimulate the investigation of other methods that had not been considered.
  7. Head injury survivors live in a world filled with those who have not experienced brain injuries. Sharing experiences creates opportunities for members to realize there are others with similar challenges.
  8. By listening to others with similar deficits and with the guidance from professional facilitators, survivors can distinguish problems that result from a brain injury from those that would exist without a brain injury. This ability may allow the survivor to feel more comfortable when dealing with a world filled with individuals who have not experienced a head injury.

Many individuals have asked what benefits can be obtained from a head injury support group. When I read Ms. Schwartzberg's article, I felt she had provided a realistic summary of the many benefits and experiences available through head injury support groups. I hope this article will help us promote the Brain Injury Association and allow us to obtain more support from those without brain injuries.

Schwartzberg, S. L. (1994). Helping factors in a peer-developed group for persons with head injury, part 1: participant observer perspective. American Journal of Occupational Therapy, 48(4), pp. 297-304.