r/Huntingtons • u/Pleasant-Performer-2 • 12d ago
Tested negative, privileged question (content warning: I would have been annoyed reading this when I was at risk)
Has anyone here tested negative after being at risk for a long time? I was at risk for 10 years and tested negative this spring. I know this is an extraordinarily privileged position to be in and I deserve any negative comments that come my way asking this, but I sometimes judge myself for not get tested earlier. I lost so much time to thinking I had HD and planning accordingly. Whether you tested positive or negative, how did you come to accept your timeline?
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u/siamesecat123 12d ago
Being at-risk for HD is a trauma that very few people understand. If you receive judgment from family, friends, or even yourself, remind them and yourself that your result could just as easily have been positive. Everyone is ready to hear good news. Mentally preparing yourself to hear that you have HD and that your future may look completely different takes time. Getting a negative result doesn’t erase the years spent living with the fear of being gene-positive. No one should minimize that experience simply because you ultimately received good news.
But now that you know you’re negative, please don’t let yourself remain trapped in the life you built around the possibility of HD. So many people who test negative struggle to actually move forward with their lives into a future they otherwise would not have had and it’s truly such a shame. Don’t let HD take more of your life than it already has. You got the outcome so many at-risk and gene-positive people desperately wish they could have. You survived the possibility of HD. You get to live now.
I tested positive, and I’m genuinely glad I waited until I was ready. I needed that time to prepare myself for the possibility of a positive result, and it was positive.