Dealing with Stigma
Mental-Health-Today.com (n.d.) noted that "overall approaches to stigma reduction involve programs of advocacy, public education, and contact with persons [with Traumatic Brain Injury] through schools and other societal institutions" (para 2, retrieved on April 2, 2009 from http://www.mental-health-today.com/stigma/stigma2.html).
The first step to reducing and removing stigma is to increase the awareness of TBI's impacts.
Below is a list of things, which may improve our awareness on the impacts of TBI and the assocaited stigma:
• The person living with a brain injury is a different person than previous.
• The person living with a brain injury often loses their sense of identity, until they have adjusted to their new “self.” The adjustment process can take up to two years before they “start” to feel comfortable with who they now are, and often times longer to accept their new “self.”
• Persons with a brain injury grieve their loss of “self.” Family members and friends grieve the loss of the person they knew and loved previous to their brain injury. Each person grieves in their own way and individual time frame.
• A person who is in a state of “crisis” can become self-centered and focus mainly on their personal loss and how it affects their life. Because their personal loss was so great, the person who suffered the brain injury can fail to recognize that family and friends also suffered a loss. Family members and friends might feel guilty whenever they focus on their losses, because the loss of the brain injury survivor was so much greater.
• Often, self-esteem and self-worth are based on our abilities and accomplishments. When we lose our ability “to do,” or when we mess up most things we try to do, we feel like failures. We begin to think that our loved ones would be better off without us, because we don’t want to be a burden nor an embarrassment to them. This is our perception, not theirs. When we learn how to separate “who we are” from “what we do,” we can laugh at our shortcomings and accept our flaws, instead of making fun of ourselves with put-downs and damaging our self-esteem.
• It is important for the entire family to learn about brain injury to gain a good understanding. If family members do too much to help the person with a brain injury, it gives the brain injury survivor the impression that they are not capable and stunts their growth. Educating the family helps reduce the frustration and miscommunications that are part of the transition.
• When a spouse suffers a brain injury, roles in the marriage can change or be reversed. If the husband was injured and can no longer work to support the family, the wife might have to take on the breadwinner role, and the husband might assume the domestic role. If the injured spouse isn’t able to work outside the home, nor able to take care of the family and home responsibilities, the healthy spouse becomes burdened with all of it. The entire family dynamics are turned upside down.
• Persons with a brain injury often repeat themselves when speaking. This might happen if the listener doesn’t respond with the response that is being anticipated by the brain injury survivor, or if there is no response. Repetition is the brain injury survivor’s means to make sure that they said it correctly. This can irritate the listener, if they interpret the repetition to be for their benefit. (Comments that indicate this are: “I heard you the first time,” or “You already said that.”) Responses to indicate that they understood what was said help eliminate repetition from the survivor.
• Persons with a brain injury impulsively blurt out thoughts or interrupt others because they are afraid the thought will leave them if they don’t express it immediately, or because they have trouble containing their excitement.
• Intense concentration can drain the brain battery.
• Over-stimulation or deep concentration without pacing put the brain injury survivor at risk for inappropriate social behaviors. Persons with brain injuries say the random thoughts that most people think but don’t say out-loud. (conversation balloons) Many times, they are equally shocked and disappointed by what fell out of their mouth. (Also referred to as “thinking with your mouth open”).
Retrieved from Answers4Fmailies.org, a partnership of the Nebraska Department of Health & Human Services and UNL's Center on Children, Families, and the Law, UNL Extension at the University of Nebraska (2009).