One of my mom's best friends when I was a kid had Huntington's. She was a few years older than mom, and her sons were a few years older than my brother and I. One of them chose to get tested. The other chose not to. I remember thinking that was foolish, but I was seven years old. In retrospect, it's strange that a seven-year-old was privy to such things.
I chose not to get tested when the test was new. I still haven’t, but I feel confident I dodged the bullet based on my age vs my relatives’ age of onset. I used to wonder if I could take the news of having HD. Now I wonder how life would have been different knowing for sure I don’t have it.
It was primarily that shadow. Until recently I worried every time I fidgeted too much or got angry enough that I wanted to punch somebody [0].
Knowing I could become sympathetic at any point made me more conservative in my career. Once that happened I would have less than five years of earning left. As a kid I wanted to start a business [1], but that was always too risky. Instead I’m the guy who actually considers the employer life insurance options because there’s no way anybody will insure me on my own. I’ve worked at a couple of late stage startups, but I’ve never been part of the early days where payroll is on the line every month.
This could have been mooted by a genetic test at any point. My wife, brother and mother thought I shouldn’t get tested. They’re the ones who know me the best, so their unanimity was influential. But it was my decision all along and I own it.
[0] In hindsight the fact that I never actually acted on a violent impulse should have been reassuring instead of worrying)
I completely understand why someone wouldn't want to get tested.
There are several episodes of House M.D. that deal with this. Hadleys, one of the doctors, mom had Huntingtons and house hounds her to get tested. She doesn't want to get tested. Really great set of episodes.
I can completely understand how knowing/not knowing would change how you approach life.
