By Phil Hardt, a husband and father with HD

Some observations I've been making over the last couple of months regarding the impact of HD on marriages and relationships: HD is hard on marriages because since our spouses have known us for many, many years, and since we look the same physically, they also presume that we're the same person they've grown to know both emotionally and cognitively. However, in the early stages of HD there are mostly mental, cognitive, and emotional disturbances that begin so subtle that one never associates them with the disease. And even once the question of HD enters in you're still asking yourself how much is HD and how much is the person because they still "look" okay. It becomes a vicious circle.

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I think that by the time the pendulum swings the other direction and you realize that the damaging behaviors are probably "disease-related," instead of personal, it's too late in most cases to salvage the marriage, or relationship because there have already been too many bridges burned and feelings hurt, etc., etc. I would even venture to say that in a lot of cases, the possibility of HD causing the illogical behaviors doesn't even come out of the closet until the 11th hour because of the pervasiveness of secrecy that shrouds some families and their related diseases. I understand why this is so hard because all of our lives we've seen others primarily with physical infirmities and have a paradigm that to be sick you have to exhibit some physical handicap. I almost wish that HD started with some hideous physical infirmity because then I believe there would be an immediate acknowledgment that a serious problem existed and help would be solicited sooner.

At first my wife kept wanting to judge my actions, words, and failings based on this person who at least looked the same physically. However, after all attempts to reason with me and appeal to the same values and beliefs that we both espoused before HD crept up on us failed, did she finally start believing that maybe, just maybe, this might be the disease. Plus, a very good friend who is a psychologist working for the local school district, also helped both of us, in addition to our regular counseling visits. I was lucky, very lucky. It was a very hard paradigm for her to begin overcoming.

I think this is very hard because, since I can still do so many things the way I used to, I'm perceived as being the same person as I was before, not someone with so many mental problems. I think the only way to help alleviate this problem is for us to continue to be as open as we can with each other and keep trying to get our message across to other family members in hopes that they won't have to make the same mistakes that we've made.

I would also like to see a more truthful rendering of the possible mental, behavioral, emotional, and cognitive devastation that exists early on in the disease to alert everyone right away what to be looking for. I know what the Physician's Guide, and other reports say, and although a few examples are cited, many more explicit examples, with easy-to-read explanations as to the "whys" need to be included. With as many "at risk" families as we have out there, the brightest future we can help them have is to educate them far beyond what we were. The sheer numbers of our "at risk" family makes me shiver because I know that all of the estimates are probably low and I believe we all have an awesome responsibility that lies ahead

- published May 21, 2000

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