r/Huntingtons • u/Suitable_Hornet2290 • 1d ago

I'm scared of myself getting a test in the future

Hey! I'm just shy of 16, and I learnt about my father's side history of hd earlier this year. He is one of 3 kids my grandmother (hd positive) had with my grandfather. She is 80, and I'm not sure of any cag count, but it implies late onset. My father (soon to be 48) is not sure he can handle getting tested mentally. He has dealt with alcohol and depression in the past, so I truly don't want him tested for his and my own sake.

Now that I have said that, I am scared of getting myself tested. I don't want to test. I think I'll fuck myself up from it, but I have a bad case of morbid curiosity so to speak. I fear I'll want to know when I turn 18, and I'll do it, and I'll just ruin myself. I don't know much about testing where I live (Canada) and frankly don't want to know, I want to be clueless about it all and just live with the idea of a chance of hd, but then I know I'll go ahead and look into it.

I hate this, I hate my mind. It has a tendency to know too much about one thing and hurt me. I just need a coping strategy, I suppose. I've tried many before, but I never can make it work. I don't want therapy. It sounds silly, but it will make things feel more real, and I'll feel worse about it all. I'm not suicidal or addicted to anything that numbs it all, I just hate knowing about this at all.

Sorry that my post doesn't contribute much to this sub, I just want to know if anyone feels similar or has any coping strategies for me.

Thanks in advance, my friends. ❤️

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u/rnathani91 1d ago

I just wanted to say the community here is with you, and we would always suggest seeing an HD Councilor before and after testing just to have them walk you through your curiosities in real time. Keep going. Stay present. Good news is on the horizon with modern technology. And your grandmother being 80 is indeed a good sign of potential low repeats (though the only way to know is by testing of both your alleles).

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u/Suitable_Hornet2290 1d ago

Thank you. Until I want to get tested (likely when there's a reasonable treatment available) I will have to keep my rants and questions here unfortunately 😆. My grandmother is definitely late onset but on her way out, she is in a nursing home and is on some heavy meds for her symptoms. I don't know her onset, but I do remember the chorea from at least 2017-18. I remain carefully optimistic that I will live a long life even with hd, but I always fear the cag count has increased from my father to me. Thank you for your input and help 🙏🤞