Monday, November 9, 2009


The dictionary defines "denial" as:
  • The act of asserting that something alleged is not true
  • A defense mechanism that denies painful thoughts
When a person is dealing with the concept of having Kennedy's Disease, I believe there are several forms of denial. In today's article, I will address two common forms.

(1) One type of denial is the refusal to accept that there is something medically wrong with you. It often accompanies comments like, "I am just getting old," "it must be an old knee injury acting up," or "I was always a little clumsy." I am familiar with this form, because I used it quite often in my early thirties and forties. The only way to help the person who is exercising this form of denial is to educate them as to possible health issues and reinforce (do not be pushy) the need to have a discussion with a neurologist. I believe the person already knows that there is something wrong. He just is not ready to accept it (I know I wasn't).

In this form of denial, even when the person begins to accept the fact that he has Kennedy's Disease, he refuses to share the information with others. Often, his pride will not let him 'expose himself' to the world. This is often a dangerous phase for many of us.

I will twist the meaning of the adage, "Pride cometh before the fall," to reflect how this period of denial was a dangerous time for me. When I found out that I had Kennedy's Disease, the last thing on my mind was sharing that information with others, especially my boss and co-workers. My pride (ego, insecurity, or whatever you want to call it) would not let me admit to anyone that I had the disease. I was afraid that by admitting it, the relationships with my boss and peers might change and it could possibly hamper my career. During this period, I experienced several falls while working including one that resulted in a broken bone. Every one of these falls could have been avoided if I had been honest with myself and with my boss and co-workers.

(2) Another form of denial is when family members believe that a person who has been diagnosed with ALS (Amyotrophic lateral sclerosis) actually has Spinal Bulbar Muscular Atrophy (Kennedy's Disease). The family members feel that the person has been misdiagnosed because a father, brother, or uncle has already been diagnosed with Kennedy's Disease. The person, who has finally accepted that he has ALS, does not want to consider the possibility of a misdiagnosis. It was difficult enough to hear the words ALS, so more testing is the last thing the person wants to hear about from you. Fortunately, this happens less often now that there is a DNA test for Kennedy's Disease.

Even more interesting is what happens after the misdiagnosed person has lived passed the predicted five-to-seven year life span for most people with ALS.  He beings telling people that he has beat the odds.  At this point, it becomes far more difficult to accept, and almost impossible to admit, that he was misdiagnosed.  Instead of rejoicing over the possibility of a misdiagnosis, a person will often defend the original diagnosis.

As I see it, most everyone (family included) has to go through several stages of the 'grieving process' before reaching 'acceptance' (see "The Nine Stages"). Unfortunately, some never complete the process. My advice to those concerned family members is not to try to force the misdiagnosis issue upon the person. Providing information on both diseases and be patient. Give him time to consider and accept the possibility that he could have been misdiagnosed. Also, discuss the concern with your family doctor (or neurologist). Whatever you do, however, do not try to force the person to go through more testing. Acceptance will come, but it might take time. 

What other forms of denial have you seen or experienced? How did you work your way through it or help someone else work through it? I look forward to hearing from you.

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