Traumatic Brain Injury — My Struggle Living with an Invisible Disability Part 1 Revisited

On August 17, 2007, I wrote the 4 part article, My Struggle Living with an Invisible Disability. I wrote the article to share what I learned through my experience of living with a traumatic brain injury and an invisible disability.

To share what I learned surrounding my interactions with people who could not accept my reality.  I feel led to reprint, the article at this time,  as I believe what I shared in the article series will be a benefit. Be a benefit to individuals living with brain injuries and many times, invisible disabilities. A benefit because of a lack of understanding surrounding the invisible nature of brain injuries. My experience, and what I share in this series helped me to begin to accept myself as an individual living with a brain injury and an invisible disability. Accept who I am when other people could not or would not accept me. What I share in this series may also help you to accept yourself as an individual living with an invisible disability.

What I share in this article helped me to grow in self-awareness, self-acceptance, self-respect and self-esteem. The information helped me to stop fighting against myself. The information helped me to live beyond my denial and the denial held onto by other people. The information that I share in this article series helped me to begin to practice the principle of, live and let live. The information in this article series helped me to accept my limitations, but not be limited. The information in this article series helped me to let go so that I could move forward with my life.

And now for Part 1 of the series, My Struggle Living with an Invisible Disability. Please note that links to the other 4 parts of the series are listed below Part 1.

Welcome back to Second Chance to Live today. I am happy you decided to take some time to visit with me. I am honored to have you here. Today I am going to process some of my personal struggles with you. Before I was aware of this particular struggle I believed I deserved to be abused and berated. I believed that I deserved to be abused and berated because I thought there was something inherently wrong with me. Because of what I was led to believe about myself I did not believe that I made mistakes, but that I was a mistake. My belief kept me stuck for many years.

In the context of this article, I would like to share some observations with you. These observations have been made through my interactions with 4 different groups of individuals. I typically do not like to label or place people in stereotypes, as labels can be very limiting, however, in this instance, I will use groups to illustrate my struggle. To share what I discovered that led to the struggle of living my life with an invisible disability.

Four Different Groups of Individuals

As a person with an invisible disability, I have interacted with four different types of individuals over time. The first group involves people who are completely oblivious to my being a traumatic brain injury (tbi) survivor or for that matter do not care. The second group of individuals who hear that I am a tbi survivor, but because my disability is invisible believe that I am somehow using my invisible disability as an excuse. These individuals treat me with contempt, either overtly or covertly because I am unable to satisfy their expectations.

The third group of individuals knows that I have am a tbi survivor and that my brain injury has affected me in some manner, but still want me to function as an individual without a brain injury. The individuals in the third group also believe that I use my brain injury as an excuse when I tell them I am unable to fulfill their expectations. The individuals in the third group refuse to accept that I have legitimate limitations and deficits.

When I state that I can not do something because of my brain injury — or what some people refer to as a “head injury” — individuals within the third group blame me for reminding them that I have a brain injury. The fourth group of individuals thankfully realize that I am a traumatic brain injury survivor and that my brain injury interferes with my ability to work with people, especially with those in the first three groups. They also understand that I am not making excuses for what I can not do and accept and value me as a friend.

With the fourth group I do not have to be more than I am, nor do I have to continue to convince them that I have an invisible disability.

The second and third groups of people give me lip service when they tell me they understand and accept that I am a traumatic brain injury survivor. Nevertheless, when I interact with the second and third groups of individuals I feel less than because I can not measure up to their expectations. Nothing I can say or do can convince them of my predicament – being disabled despite not appearing to be disabled. When I interact with the third group of individuals, I feel like I am between a rock and a hard place.

The second group blatantly chides and ridicules me with disdain while the third group has a degree of awareness and acceptance until individuals within the third group want me to be or give more than I am capable of giving. In my experience, when members of the third group have an expectation of me — which I am unable to achieve — I also receive ridicule and covert contempt from them. When I tell these individuals that I am unable to be more or do more they want me to buy back into their denial system.

Their denial system includes manipulation through shame, guilt, and emotional coercion. I have spoken of this denial system dynamic throughout Second Chance to Live.

I have spent countless hours attempting to disprove the reality of my disability. For many years I internalized the impact of my disability as a reflection of my being. I shamed, blamed, berated and criticized who I was because of my inability to perform as an individual without a traumatic brain injury. I allowed my Dad to treat me with contempt for many years because I did not know the significance of my invisible disability.

Per your information, I have only recently –in the last 5 years– come to accept that I am a traumatic brain injury survivor, who has an invisible disability. Several months ago I turned 50, so for many years I was led to believe that the severe injury to my brain injury –which occurred in August of 1967– had little to do with my limitations. Rather than supporting and encouraging me through my process, my Dad criticized my attempts to overcome my deficits and limitations. Good was rarely good enough for him during many years of his life.

Currently, I have the above third group dynamic taking place in my life with members of my family. Although my Dad passed away January 10, 2007, I am continuing to be affected by the legacy of his denial.

Some of my family members still want me to do and be more than I know would be good for any of us. My family still has unrealistic expectations of me, despite my reality; however, I am no longer willing to allow those demands or expectations rule my world. Even though I have spent a lot of time logically explaining to them why I can not fulfill their expectations, they continue to be angry with me. In essence, my family members want me to again buy into the notion that I should not be affected by the injury to my brain.

I have reached a point in my life where I am unwilling to buy back into anyone’s denial system. I spent too many years of my life berating myself, for who I am because I did not measure up to someone’s unrealistic expectation. Today my good is good enough. I am OK with me and I accept myself as a man with an invisible disability.

For context please read Part 2, Part 3, Part 4 and Part 5.Thank you, my friend.

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