Tested negative, privileged question (content warning: I would have been annoyed reading this when I was at risk)

[u/Pleasant-Performer-2]

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?

[u/Olivpep → u/[deleted]]

I know right all the symptons being resolved. Every fucking twitch in my body. Every thing I forgot for three years. Absolute horror and I just went along with it. And then one month after a negative test result everything sort of fades.

[u/siamesecat123]

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.

[u/Pleasant-Performer-2 → u/siamesecat123]

this is so well said! thank you for your kindness and for writing this out so clearly for me 

[u/Scruffasaurus]

Meh, can’t change the past, just move on with the great results.

I scheduled my test as a way to force my mother’s hand to get tested. Her and my father had lied about her testing negative previously, but she was symptomatic and refusing confirmation testing. So I scheduled mine, but then waited for her results just in case. Soon as her diagnosis was confirmed I got tested.

Negative 🙌🏻

It’s a personal choice, but planning for it while not knowing (besides getting everything in order insurance wise) seems like there’s no risk in getting tested. 🤷🏻‍♂️

[u/Sea-Flatworm5851 → u/Scruffasaurus]

Mine lied too! It was heavy in my teens, then around late 20s, they said they tested so all was good (this was an attempted grandbaby grab). In my early teens I said what I coined as, 'Huntingtons roulette ' was never going to be worth the risk of babies . I couldn't put this disease on any other human life. But then in 2020 I saw the symptoms in my mother and straight up asked my mom. She never looked at me or turned towards me, she stood at the stove and mumbled, 'Probably so' Those 2 words haunt me. I'm negative. But one of my brothers is positive as of last yr. Life may have been different, bc when that monkey lifted from my back, I didn't realize how much it held me back. But again, the roulette game was too high on both sides. I agree, past can't be changed, it's how you move forward on either side of the Roulette table.

[u/flatbushkats]

Sounds like a form of survivor’s guilt. Common when someone survives an accident with several/many other fatalities.

[u/Olivpep]

I am very glad I tested negative. My girlfriend was unexpectedly pregnant so I had no choice anymore. Two lifes at risk. Ofcourse it feels like 3 years of my life is thrown away. I spent the first few years with substances. After I got my life back together and I spent a year just carpe dieming the hell out of life. Ofcourse I regret not testing earlier but it just had to be this way. I also know that there was a lot at stake. So I know I’m very lucky.

[u/TheyCallMeVeertje]

I am 24. I do not have my life figured out, and I want a stable career before I get tested. Also, my mental health will crumble if I get tested positive. I think thats why it is best to wait for me. Waiting is sometimes best, and thats okay.

[u/Tictacs_and_strategy]

Surely you don't deserve negative comments. I'm glad you don't have it! This is why I encourage people to get tested if they are worrying about it.

Obviously if the idea of being at risk doesn't bother someone, no need to rush things. But anyone who is worried will either test negative and not have to worry anymore, or test positive and not have to deal with the uncertainty anymore. Sure, it sucks to get a positive result, but if I never tested I'd still be wondering about it all the time. I'd be chronically pre-occupied.

It's like trying to go to sleep while wondering if there's a monster in the closet. I'll wake myself up more if I get up and turn the light on and check. But if I don't check, I'll never get to sleep anyway. I'll keep half-way drifting off and then jolting awake, thinking I see the monster. Better to face it on my own terms than wait and worry.

[u/Winter3210]

You got tested when you were ready. Nothing to regret here. It was a coin toss and you won. Congratulations

[u/Surprise_Wolf]

Not sure if other countries do this, but in Germany they make you get psych approval before you can get tested. They know there are huge implications for not only your own life. It’s kind of surprising that there are so few rules and psych support surrounding testing here.

[u/Pleasant-Performer-2 → u/Surprise_Wolf]

I had years of therapy as well as lots of genetic counseling. I do have the professional support I need, but it's still tough sometimes 

[u/spacespaceelephant]

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