A blog of HD (At Risk for HD) that I follow recently published a two part blog on the cycle of denial when it comes to Huntington's Disease and all that is associated with it. In this blog, the author talks about how he began his blog under a psudeonem and wrote it for seven years before he finally revealed his name to a select group of people. But even still, he has not told anybody he works with each day or any friends and neighbors. There is a tendency to want to deny the prescence of the disease because of the stigma that is attached to it. And even now, when he is ready to bring the information to his friends, neighbors and co-workers, his wife doesn't want him to. For the sake of their daughter, she says. That way she doesn't have to face the ramifications of the disease. A side note here is that they already know that she doesn't have the daughter does not have the disease because she was tested in the womb but knows her dad has the disease.
Similar to many other things that we deny, many that are at risk for the disease want to cling to the mentality of "it won't happen to me". Robert is a perfect example of that. When they learned his mother had the disase, he decided just for the heck of it to get tested but was positive that he did not have it. Apparently, he was writing a "book" about his life at the time and thought this would make for a good chapter. I have never seen this book so I don't know if it really exists. But, he was sure that he did not have the disease. Imagine his surprise when the doctor told him not only that he had the disease, but that he had high numbers which could mean he would experience the disease at an early age or that he might have a greater than 50% chance of passing it on to any offspring. Still, at first, he didn't want to beleive he has HD. Even today, there are times that he wants to deny the prescence of the disease. Don't get me wrong, he knows he has it and freely admits it, but he refuses to believe that it will change the way he lives his life. He doesn't want to aknowledge that one day he will end up living a life similar to that of his mother. If he denies it, maybe it will never happen. He keeps canceling his appointments with his neuroligist and the specilist that he has been referred to. He says because the days the appointments are scheduled are not conveinent or something comes up. While in some cases, that is true, he has admitted once or twice there is a bit more to it than that. He is afraid that the doctor will tell him that something has changed or that his brain is beginning to how signs of the disease (or black spots as they are often referred to) or be told that he needs more medication or something.
Then, there is one of his brothers that has never been tested. Of the five siblings, he is the only one that has not been tested. Granted, he is a few years older than Robert and would most be likely showing minor symptoms by now if he did have it, so most likely he doesn't have it. And since he doesn't have any biological children, he doesn't feel the need to be tested. Plus, he has often said that if he did find out, he would probably become a more crazy, daredevil person that didn't care whether he lived or died. Not knowing for him seems to be the better option becuase he can lead a life of ignorance and not knowing.
The author of the above mentioned blog made what I think is a very profound statement in this blog... Families that deal with [HD] naturally and up front are the ones that have the best outcome in the long run. Denial is necessary in life, but when carried to extremes, or used as the main way of dealing with life…. It becomes harmful/pernicious.
Now, in Craig's case, it is probably not denial because he does not seem to be affected by the disease. He is not showing any symptoms when other family memebers younger than him are. We could be way off base and he might very well have the diesease and we just don't know it, but it is highly unlikely at his age.
However, if a person has symptoms - even minor ones - of HD and a family history, they owe it to the rest of the family to find out. Consdier Robert's family. Long before his sister Debbie had. And it wasn't discussed in detail with the family. So, none of the kids really knew what the situation was. It was not until Cheryl was diagnosed with it that the kids began to get tested. Debbie had already had her children. Would she still have had her kids knowing she might pass this diesease on? Nobody can say for sure because she never had the chance to make that type of an informed decesion. And since the state of Texas will not allow somebody to be tested for the disease until they are 18, the possibility of finding out if her 3 sons have it is still a few years off. And his brother Kevin had already had of his 4 kids. Fortunately, Kevin does not have it, but he didn't know he was at risk in the beginning either.
So, when the author of this blog says that his wife doesn't think that he should "come out" about the disease to his family and friends, I have to disagree with that. While I do understand the desire to shelter thir daughter (who is 9) I think it is harmful and dangerous to her and the rest of the family. If a person denies the existence of the disease, they deny themselves the oppurtunity for possible new treatments, the love and support of family and friends as well as the chance to help educate others on this disease that is still not very well known by many that have not in some way been personally affected by it.
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