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Denial

Some people say that denial is the minds way of putting off until tomorrow what it hurts too much to admit today. I believe that. It is like a built in self-defence mechanism that kicks in when you can not deal with something emotionally.

Everyone deals with things in their own way and at a different rate of speed. There is no guidebook to tell us how long it will take us to come to terms with something, or what is an appropriate form of grieveing. But the official five stages of grief are--Denial, Anger, Bargaining, Depression and Acceptance. It is so easy to get caught on any of these stages. But it is necessary to pass through each one to reach the desired goal of acceptance.

Denial is a very strange and varied symptom of Huntington's Disease. It can effect not only the person with HD, but everyone around them as well. Spouses, siblings, parents, realtives and friends, as well as coworkers and aquaintances.

When I went through testing 7 years ago there was alot of denial around me. Created mostly by a lack of knowledge about Huntington's Disease but also the firm belief by my family that I would test negative like my sister did. We had only found about about the HD when I was 28, none of us knew anything about it.

Through this process I learned that everyone has a right to their own denial and trying to force people to see things when they are not yet emotionally able to deal with it, is not a good idea.

All these years later the family and friends who surround me are all at a different level of acceptance/denial. I have some who want to get inside my head to see what I see, and inside my body to feel what I feel. They ask alot of questions and want to know exactly where I am at.

Others do not want to talk about the HD or what is happening symptom wise for me. They ask no questions because they really do not want to know the answers. And thats okay too. They do not want to see me as anything less than whole. The truth of my being diagnosed with a thus far incurable disease is just too much for them to let into their world.

To those who ask the questions I have sent informations packets and sent copies of things I have written. To the others, I have sent nothing. I guess I figured that when someone was ready to ask the question that they were ready for the answer. I thought this system to be most logical.

Then recently an old friend asked me why I had not sent her any information of my disease. I told her because she did not ask me about it and I did not want to give her too much information before she was ready.

Turns out she did not ask any questions because she did not want to upset me or make me talk about the HD, she was waiting for me to make the first move. ( So much for my theory). And now when people ask about the HD or what my symptoms are my question to them is how honest do you want me to be? And I have made a point of telling other friends and family members that I am open to talking about my HD anytime, any place. I assumed they already knew that, and that it went without saying, but it did not.

While it is common for some people with HD to deny that it exists, in some cases it is not really denial. I once read an HD write up that said SOME people with HD do not deny their symptoms, its just that the knowledge never makes it into their heads. So if that information is not entered then they are not in denial, they are unaware because that program simply has not been entered into their "computer system"/brainbox. Kind of like if someone accused you of doing something that you have no memory of, you are not denying what they say but you have searched your brain and that knowledge is just not there to connect it to.

This is true of people with HD sometimes. I know people with HD who have severe chorea and do not think they have HD at all. You would think with all those movements that there is no way they could not be aware, they must be in denial.

Knowing that involuntary movements are often incorporated into purposeful movements helps to explain this. My Father with HD would have a strong involuntary arm movement and then swing his arm up to scratch his head in the same motion. To his mind he did not have an involuntary movement, he was just scratching his head. But it was an involutary movement that followed through to be a purposeful movement, thus masking it.

The hardest denial to deal with is HD persons whose symptoms pose a danger to themselves or others. On the one hand they are entitled to their denial, but on the other hand they are a danger. By-passing a persons self defence denial system could well be hazardous to their health. And not doing so could cost just as dearly. Very hard choices.

I am not in denial about my HD, but I do wonder for every symptom I do notice if I am missing just as many. It is real and I try to take my symptoms in stride. To go with the HD rather than try to fight it saves so much energy. It does not mean that you give in, but instead that you "accept the things you can not change". And get back to the task of really living each day of your life.

Educating yourself about HD is the very best thing you can do for yourself of family members with HD. Knowledge is power because we can not accept what we do not understand. Learning about Huntingtons makes it easier for everyone involved at every level of this disease. And talking about it is so very important. If your family members are not open to it then talk to other HD families in the same position.

And never lose sight of the fact that the cure for Huntington's Disease is right around the corner...

Printed: 06 Sep 2010
Find this article at: http://www.hdac.org/
Article posted to www.hdac.org on: 11-24-2004