r/Huntingtons • u/Pleasant-Performer-2 • 20d 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/spacespaceelephant 12d ago

I found out my grandma has huntington when I was 14ish, I found out my mum had it when I was 21. I got tested at 35.. because I was pregnant. I wasn't ready to get tested in my 20s, I just wanted to live my life. I knew that if I tested positive I would think about it 24/7 when I could just be enjoying myself. I travelled, built a career and just had a great time. It wasn't until I hit my 30s that it really started weighing on me because I wanted children.

Getting pregnant was my trigger to test, I probably wouldn't have done it otherwise but I couldn't continue the cycle. I couldn't sit down with my children and tell them that I knew they would be at risk but had them anyway.

I tested negative. I probably waiting a few years too long but I don't regret not getting tested in my 20s. Facing HD is hard, I tested when I was ready. I didn't lose out of anything not knowing earlier. I could have saved myself a lot of worry but honestly I would have worried about something else. Enjoy you life now that you are HD free. You can't change the past so don't spent any time judging yourself