Plus, they may be driving themselves crazy doing what we call "symptom seeking", where they may as well have it. I can't tell you the number of times I lose my keys or call somebody on the phone and then can't remember who or why I'm calling them or bump into a chair or any number of things. I don't happen to be at risk for Huntington, so I just let that go and laugh it off as well, I'm getting senile but what can I do about that. But for folks at risk for Huntington, it's a painful reference every time they do anything of concern. So for them, knowing allows them to go forward.
Those who don't want to know have equally valid reasons. They say that they really don't want to interfere with their now. They're concerned that if they knew they had the gene, they would be so worried and thinking so much about their future that they would lose their now. So they choose to leave that window open. They have a tolerance for the uncertainty and that's fine. Many of them do. They say, "I'm doing all the right things anyway. I'm going to plan for my kids, I'm going to make the right investments, I'm going to buy a house that has one level. I'm going to do those things, anyway." I don't need to know that I have the gene to do the right things. There are no right or wrong decisions on being tested. It is extremely personal.
In fact, if I speak to someone and there's any ambivalence whatsoever, I strongly encourage them to wait. Don't go forward with this if you're not sure. What does sure mean? As sure as you can be. But if you have nagging ambivalence, don't do it. Some individuals are incredibly resilient. Others are haunted by that image that I alluded to before. They fear, literally fear, becoming their parents. They've got the picture in their mind. They know what it looks like.