“Learning of an Inherited Disease. It has been almost a year since I learned that I’d inherited the abnormal gene that causes Huntington disease. In hindsight, I can say that if I’d known a year ago the way I was going to feel today, I probably wouldn’t have chosen to learn the results of the test. At the same time, I should also say that a year ago I would not have accepted an explanation of the risks-of-knowing.
Depression. I always thought that knowing whether or not I had inherited the abnormal gene would only have positives associated with it. On the one hand, if I was certain that I didn’t have the gene then I could go about my life normally. I had forgone nothing (except perhaps having a family). On the other hand, I thought that knowing I had the trait would allow me to better plan what would likely be a shortened life. All of this put the most positive spin possible on learning the results of the test — either a small cloud would go away forever, or the small cloud would be there tomorrow. For me, the reality has been that the small cloud has become much larger and much darker, and has cast a shadow over everything. I have not wanted to tell anyone. I don’t want to burden family and friends with this. In addition, the fewer people who know, the less chance of someone else knowing. If I had a spouse, obviously that’s one person I would have told.
In fact, I did tell one person. About the time I learned, I was going through a difficult period with a significant other of several years. At this time we weren’t seeing one another, but we weren’t seeing anyone else, either. Reconciliation was still an option, but only if we both wanted it. Both of our lives were on hold. It seemed to me that disclosure was the right thing to do.
Loss of Self-esteem. This has manifested itself in the way I interact with individuals of the opposite sex to whom I feel attracted. At some point during dating, certainly by the time the relationship became “serious,” I would have to inform the other person of the diagnosis. Although this hasn’t happened yet, I do feel the other person would not want to be involved with someone with this diagnosis. This has resulted in a decreased sense of self-worth. Also, a concern about being completely alone at some point in my life.
Feeling of “What’s the point?” There have been numerous times in the last year that I’ve found myself thinking, “Well, what’s the point of …” For example, I have been a 90% vegetarian, and I eat low-fat food. I have found myself eating much more junk-food, meat, etc. Predictably my weight has gone up. There have been times I’ve asked myself, “Is there any point in doing something about it?” This isn’t a behaviour I’ve exhibited before.
Changed Priorities. The most significant change I have made in my life is changing the priorities of the things I intended to do in the 10 years either side of “normal” retirement. I find myself placing the highest priority on the activities that have the most personal satisfaction. I had planned to do humanitarian work for the first few years of retirement. I have decided this is something I want to do now. People have tended to view this change with incredulity; obviously, because they don’t know the reason why I’m doing it. Living With the Symptoms. I have no memory of seeing anyone with the symptoms, so I don’t really know what the symptoms look like. However, I do know that unlike many motor-diseases (e.g. ALS), where thinking seems to be unaffected (exemplified by Stephen Hawking), this is said not to be the case with HD. I find myself wondering whether I would have the desire to live with the symptoms.
Also, I’ve gone from viewing myself as primarily “well” to “not well.” I wonder, and I have concern, that others would view me the same way if I told them.”