In August 2007 I wrote this 4 part series. In lieu of what transpired with Natasha Richardson and the subject matter of traumatic brain injury being discussed as an invisible disability — on ABC Radio San Francisco KGO AM 810 March 18, 2009 — I decided to reprint this 4 part series in its entirety.
My Struggle Living with an Invisible Disability
The perspective that I share with in this series is from what I have experienced while living with an invisible disability for close to 42 years. My goal is not to affix blame on anyone — as that does no one any good – but to share what has helped me in my process.
My interest is to empower individuals who are also living with an invisible disability — due to a brain injury or due any other type of organic, medical, psychological or mental health condition. May you find the hope and courage — by reading through this 4 Part series — to both love and accept your reality and yourself.
In my experience, denial kept me isolated and alienated from myself and other people – for many years — until I was able to begin to accept myself and my reality.
And now the series…
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 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.
In my experience as a person with an invisible disability I discovered that I have interacted with four different types of individuals over the years. 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 know 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 with in the third group blame me for reminding them that I have a brain injury. The individuals with in the fourth group thankfully realize that I am a tbi survivor and that my brain injury interferes with my ability to work with people, especially with those in the first three groups. The individuals in the fourth group 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 group 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 articles written for Second Chance to Live.
In my attempt to convince the individuals with in both the second and third group of people 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 in ability 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 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.
Receive more articles like this one simply by clicking on Subscribe to Second Chance to Live by email.
All material presented on Second Chance to Live is copyright and cannot be copied, reproduced, or distributed in any way without the express, written consent of Craig J. Phillips, MRC, BA