Second Chance to Live

Sharing Hope in the Face of Adversity — One Piece at a Time

My Struggle living with an Invisible Disability — Part 1

Posted by Second Chance to Live on August 14, 2007

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.

As a person with an invisible disability I have interacted with four different types of individuals over time. The first group involves people that 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 fourth groups of individuals 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. 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 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.

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

If you have any questions or would like to make a comment please use my Contact Information Page.

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7 Responses to “My Struggle living with an Invisible Disability — Part 1”

  1. brenna said

    craig,
    so glad you are a survivor of TBI…whatever your limitations may be, your inspiration has encouraged me and I’m sure many, many more….thanks for taking the time for being honest…keeps me honest in dealing with my son…..giving me a little insight in what he might be dealing with, and not able to express….My son is not yet able to communicate and minute to minute he seems like he’s not aware of most things BUT…..there are MOMENTS…real MOMENTS…and I so look forward to knowing the person he is becoming…..

    I thank you for your honesty and pray that you continue gaining strength to not let others assupmtions rule who you are…..what insight you have, not just with yourself, but others…

    take care & God Bless you and keep you always

    Brenna
    (David;s Mom)

  2. Hi Brenna,
    Thank you again for your time and kindness in leaving a comment and your words of encouragement. They mean volumes to me Brenna. I am comforted to know that you are being encouraged to accept the things you can not change, while not blaming your son for not being able to do or be more than he can be today. Recovery can be a slow and frustrating process for both the survivor and familiy/friends. Because, in many instances brain injuries are invisible disabilities there can be ongoing frustration. I received a comment the other day from an individual who initially did not want to share his struggles with readers who visit Second Chance to Live, however after I responded to his comment, he made the decision to have his comment published under my article. I will share that comment per your insight. At the end of his comment I share my response to his comment. Please let me know how his comment helps you Brenna.

    I will say so long for now my friend. Have a simply amazing day my friend. Say hello to David for me. Please let him know that I am proud of him.

    God bless you Brenna.

    Craig

    Dear Craig:

    Please excuse my awkward correspondence, I am still trying to overcome the effects of aphasia acquired during an accident some three years ago when I broke my neck and suffered a traumatic brain injury. I wish to express my sincere gratitude for your outreach efforts and to let you know that at the very least in my case, they have helped.

    Subsequent, to the healing of the any scars from the accident, I found myself placed in my former high stress lifestyle. I also found that because I could no longer perform as before, I was rejected by friends and family alike. I was told to try harder and be more flexible. When I related that I was doing my very best considering I was in chronic pain due to a non-fused odontoid fracture, people just pushed me harder. When I was unable to produce or relate to those about me as I had done previously, I was shunned and I responded by internalizing my anger, grief and shame. I felt that I had been placed in some foreign land and that I was lost in a forest in constant midnight, trying to find some clue to get home. Needless to say the constant pain, the brain injury and the hostile environment eventually depressed me. However, I believe the fact that those I had so sorely been a support to for a significant portion of my life had abandoned me. Despite my attempts to be more
    accommodating people withdrew further isolating me and made me an irrelevant issue in their lives until some special need occurred and they saw fit to change this.

    However, something also changed in me as well. I decided utilize my isolation to constructively examine my life, desires and capabilities, and explore the possibilities that the new me presented. I began to cast off toxic relationships and situations and began to give myself permission to do what is important to me. Although, this has proved difficult because I would desire to remain in the lives of my friends and family, I recognize now that I can hot make them accept me for what I am and that it is not wrong to let go of the premise of returning to my former self and moving on. I think, that sometimes due to this sort of injury that we are so fixated on looking back to what we were, we can not see where we are going. One certainly wouldn’t drive a car down a highway looking in the opposite direction, so why should I set myself up for failure. I believe that all parties dealing with the long term aspects of TBI would benefit from appreciating that the one thing that’s constant in
    this world is change. Upon doing so, I feel that we can all better relate as the past becomes just that, a mile marker before the fork in the road.

    I do no expect that my journey will be smooth, but I go down that road knowing the by he Grace of God, I have gotten this far and if God saw fit to give me a second chance despite how everyone else might feel, I KNOW THAT I’M SPCIAL AND WORTHY OF LOVE. That one fact has helped me to at least see the first glimmers of daylight on a long day’s journey through night.

    Best Wishes & God’s speed,
    Raymond N. Ervin

    Time: Sunday November 11, 2007 at 1:43 pm
    IP Address: 24.12.155.155

    secondchancetolive Says:
    November 12th, 2007 at 2:22 am e
    Hi Raymond,
    You are doing just fine Sir. Your struggles are all to familiar to me, with
    family and friends. I am sorry you have had to endure those struggles
    Raymond. I have written of my experience in several of my posts and believe
    you can relate to my struggle. In my site map there are several titles that
    I would emcourage you to read, per your encouragement, motivation and
    empowerment, Sir. I will include links to those posts,
    http://secondchancetolive.wordpress.com/2007/04/18/the-power-of-identification/ ,
    my 4 part series
    http://secondchancetolive.wordpress.com/2007/08/14/my-struggle-living-with-an-invisible-disability/
    and my 2 part series,
    http://secondchancetolive.wordpress.com/2007/08/21/having-an-invisible-disability-%e2%80%93-the-consequence-of-denying-my-reality%e2%80%94part-1/ .
    Please read these articles and let me know if you find some solace in the
    material. You are a very special person and I greatly appreciate you leaving
    a comment for me. I am encouraged and motivated by you reaching out to me.
    God bless you Raymond! Please read my post,
    http://secondchancetolive.wordpress.com/2007/04/30/passion/.

    I look forward to hearing back from you my friend.You are a tremendous
    blessing to me Raymond.You are a bright and shining star and a gift to those
    in your world.

    Thank you for shining my way.

    Have a simply amazing day.

    Craig

  3. specialstrange said

    hello again Craig i hope you are well. i have a request, would you mind if i referred some of the people who try to support me to your writing i think they would find it beneficial, i certainly have. so much of what you say rings true for me, the inner need to constantly achieve perfection and prove yourself-i always feel like i am wrong, not good enough and need to go the extra mile to prove that i am worthy-to know that you also have felt that makes me wonder if i really need to be this way. i am always dissappointed in my own achievements even when i know that achieving them has cost me dearly in terms of energy, anxiety and physicl pain. i graduate my degree in july and know that i will not get an especially high overall grade and it bothers me even though logically i know that just getting a degree is a massive achievement. so many of my flare ups have been self inflicted by beig in the library seven days a week and trying to continue to work even when i know i need to stop and rest. when you have been like that for so long how do you go about changing the way you think-my biggest problem is not just other people faling to accept my limitations but me not accepting them, i need to change this so that i can save my energy for achieving realist goals and celebratig those achievements instead of asking why i didn’t do better. do you mind if i show your work to my freinds nd teachers?
    alex

  4. Hi Alexandra,
    I would be delighted and honored to have you share Second Chance to Live with your friends, family, teachers and anyone that could benefit from my experience, strength and hope. Thank you Alexandra.

    You are not alone in your struggle. In my experience I had to work on my shame issues. I don’t know if you have read this post, Whose Shame are you Carrying? http://secondchancetolive.wordpress.com/2007/05/25/whose-shame-are-you-carrying/. I share some insight into my struggles within that post and how I was able to resolve — at least begin to address some debilitating messages that were undermining my ability to love myself. Don’t Talk, Don’t Trust and Don’t Feel http://secondchancetolive.wordpress.com/2007/05/24/don%e2%80%99t-talk-don%e2%80%99t-trust-and-don%e2%80%99t-feel/ and the The Three Rules Revisited —
    Consequences http://secondchancetolive.wordpress.com/2007/05/24/the-three-rules-revisited-consequences/ may also be helpful to you my friend. The Illusion of Failure http://secondchancetolive.wordpress.com/2007/06/06/traumatic-brain-injury-the-illusion-of-failure/ and Whose Life are you Living http://secondchancetolive.wordpress.com/2007/02/26/23/ may all be helpful to you Alexandra.

    When I was able to begin to realize that I was not created to be a doing, I was able to begin being. Please read my post — if you have not already read — Following your bliss…regardless http://secondchancetolive.wordpress.com/2007/04/30/passion/ I would encourage you to read that post.

    The process of my healing took place over a period of time, and continues to this date. Life is a journey not an event. A process not a destination. Please be gentle with yourself as you learn my friend and take life one day at a time. More will be revealed.

    God bless you Alexandra. That really is a pretty name. Very elegant which I am sure fits you too a tee. Believe in yourself. God is not mad at you, He is madly in love with you. You can trust Him with your process. More will be revealed my friend.

    I will say so long for now. Have a terrific Tuesday and please be kind to yourself!

    Craig

  5. Liz said

    Thanks for describing what its like to live with your disability.

    my mom had a brain injury several years ago an no one else in the family wanted to address or deal with it. As a result her new vulnerabilities were exploited by a con man who wound up causing alot of grief to the family.

    As a family member who has anxiety and depression, I also feel the pain of being misundersttod by the family.They think I shoudl be able to take on superwoman taks like carign for mom after her brain injury, and thru rehab, and during her terminal cancer.

    In our family, the disabilities are the elephants in the living room. No one wants to acknowledge them, because apparently it makes ‘the family’ look or feel bad about themselves.

    Exscept for my daughter and I, my family never got counselling about how to deal with my mom’s brain injury, and then later her terminal cancer.

    I took care of my mom until her death last Dec. It was extremely hard.My niece never called.
    My sister only made a few visits tho she lives only two hours away.

    My sister and my niece have very little to do with me…you see, I am ‘mentally ill’ to them.

    Their ignorance and their refusal to learn what it means to someone to have a brain injury, and in my case, anxiety an depression, robbed my mom and I of the chance to be treated as real people for many years. We were just less than human to them. Mom was exploited in the end financially by my sister.

    I am sorry about your dad, but I am sorry you perservered and are helping others.
    You helped me today.

  6. Hi Liz,
    Thank you so very much for taking the time to write to me. I am honored by your kindness. Thank you so very much for telling me about your Mom and yourself. I am sorry to hear that your family chose to treat you and your Mom with seeming contempt. Very sad indeed. I am also sorry for the loss of your Mom. Godspeed to you Liz!

    Let me say that I am very proud of you Liz. I know your Mom was and is very proud of you — even though she passed away last December. You are and were a wonderful daughter.

    Per you family situation, I believe I can empathize with you, as I was misunderstood and minimized for many years — both by my family and by many others — because of my invisible disability. I have been scorned, ostracized, criticized and rejected because of what people in my life could not or would not try to understand. Rather than trying to understand I found myself becoming the identified patient in the family. I have written a series on* Traumatic Brain Injury and the Identified Patient*. The principles in this series can be applied to anyone who feels like an identified patient — anyone who is blamed, shamed or scapegoated in a family system.

    http://secondchancetolive.wordpress.com/2007/11/16/traumatic-brain-injury-and-the-identified-patient-%e2%80%93-part-1/

    http://secondchancetolive.wordpress.com/2007/11/17/traumatic-brain-injury-and-the-identified-patient-%e2%80%93-part-2/

    I have written a series of articles several years ago that you may also find to be helpful Rita. Read through the articles as you have the time and energy.
    *Don’t Talk, Don’t Trust and Don’t Feel *http://secondchancetolive.wordpress.com/2007/05/24/don%e2%80%99t-talk-don%e2%80%99t-trust-and-don%e2%80%99t-feel/
    *
    The Three Rules Revisited — Consequences* http://secondchancetolive.wordpress.com/2007/05/24/the-three-rules-revisited-consequences/

    *Whose Shame are You Carrying* http://secondchancetolive.wordpress.com/2007/05/25/whose-shame-are-you-carrying/

    *Displaced Sadness* http://secondchancetolive.wordpress.com/2007/05/26/displaced-sadness/
    *
    Having an Invisible Disability — The Consequences of Denying my Reality — Part 1* http://secondchancetolive.wordpress.com/2007/08/21/having-an-invisible-disability-%e2%80%93-the-consequence-of-denying-my-reality%e2%80%94part-1/

    *Having an Invisible Disability — The Consequences of Denying my Reality — Part 2*

    http://secondchancetolive.wordpress.com/2007/08/21/having-an-invisible-disability-%e2%80%93-the-consequence-of-denying-reality%e2%80%94part-2/

    *Traumatic Brain Injury and the Double Bind* http://secondchancetolive.wordpress.com/2007/08/28/traumatic-brain-injury-and-the-double-bind/

    You are not alone in you struggle with anxiety and depression. I also struggle with anxiety and depression at times.
    *The Power of Identification* http://secondchancetolive.wordpress.com/2007/04/18/the-power-of-identification/

    I have written many other articles that are listed with in my *Site Map* http://secondchancetolive.wordpress.com/site-map/ Liz that you may find to be helpful and a source of hope. Some other articles have traumatic brain injury or living with a disability in their titles while other articles do not contain those words in the titles. Nevertheless, each of the articles contain information that have been a benefit to me.
    If you have any questions Liz, please do not hesitate to ask. All questions are good questions.

    I will say so long for now. Have a pleasant afternoon Liz.

    Craig

  7. Josef Francis said

    Thank you all I thought I was alone. I was going nut the way I been treated !

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