I have often puzzled over why some people can see their own symptoms and others can not. I know this is a question many people have asked. How can my loved one with HD not know that they have HD when they have chorea? They think that on some level the person must know, after all denial is part of HD. But it is not in the way you may think.
I have recently learned that there are two types of denial with HD. There is the standard psychological denial we are all familar with. That is when you become aware you have HD but your self defense system overrides that knowledge and denial is born. They say that denial is the mind's way of putting off until tomorrow what it hurts too much to admit today. So when something happens that is too much for your mind to deal with, it deflects it elsewhere.
But there is another kind of denial for people with HD and that is called organic denial. With organic denial, what the person with HD experiences is a lack of self-awareness. They can be fully symptomatic and yet not see it at all. And not only are they not aware of their own symptoms but they also are completely unaware that other people can see their symptoms. I find that so bizarre.
I remember one of my HD doctors describing this to me before. He said he had many HD patients with chorea and when he asked some of them if they had noticed any HD symptoms they would answer no and state how lucky they were so far. And yet they were jerking all over the place. So while I have known for years that there was another type of denial-- like an unawareness, I never knew the name for it. But it does explain how someone can have chorea and not know.
People with HD can be blamed for many things when loved ones are unaware of the full impact of the persons HD symptoms. There are many things we do that can look purposeful if our symptoms are either misunderstood or discounted. It is so important for family and friends to know that the person with HD is disabled on a lot of levels. This adds a lot of frustration to the life of a person living with HD.
You can be accused of hitting or kicking people on purpose. Or accused of lying when you get the order of events wrong. The faulty memory means we will argue because we remember events differently, and that will look like we are trying to pull a fast one. We will agrue that black is white because we remember black. The slurred speech, bad balance, and crooked gait makes us look like we have been drinking.
One of the best and worst things about HD in the beginning is that it is not constant. It comes and goes, ebbs and flows. Each day can be completely different in what we are able to do. And because we can not do today what we were able to do last week we look like we are try to escape having to do anything. It can look like we are lazy, but in fact we can be just having a bad day.
When someone has organic denial it makes things so very difficult for the people around them. According to my Dr there is no benefit to making a person with HD aware they have HD until it becomes a matter of safety. If they are in denial, they are there for a reason, self preservation, and one does not want to mess with that until they absolutely have to. But the family members know that a time will come when the person must be told they are symptomatic. A most heartbreaking task.
Telling people they have HD is hard enough when it is a psychological denial happening. But when the person has the organic denial this task is nearly impossible because they can not see it on themselves. They will reject that fact because they do not believe it to be true. It is true that seeing is believing and by that same token, not seeing is not believing. So that information gets rejected and the same organic denial continues.
It is not just the chorea that the person with organic denial can not see. It is also the personality changes, the impaired judgement, and the depression that are invisible to them. The person with organic denial does not know that their memory is faulty, or why they drop things all the time, or why they are bumping into everything and tripping over their own feet.
As you can see the lack of self awareness in organic denial is incredibly far reaching. But once family and friends understand that it is beyond our control, they can better understand how a loved one who is symptomatic can be unaware of their symptoms. I am not saying that there are not some people with HD out there who are pretending not to know they have HD. Some do stick their heads in the sand and think that if they ignore the HD long enough it will just go away. But we can not lose sight of the fact that there many others who are not pretending, they really do not know.
