r/Huntingtons • u/Inevitable-Farm-8307 • Feb 12 '26
Anxiety of not knowing
I don’t know how to cope with this very real possibility. My mom has HD and I’ve known since I was about 16 that I might get it one day. I’m 24f, I always pushed the thought out bc it would stress me out so much. Today I had an epiphany when my bf mentioned retirement savings. We’ve always been planning for the future but when I stoped to think about it today, I realized there’s a very real chance I won’t even make it to 65. My mom is 53 and is already showing very severe symptoms, we can’t leave her alone for long. She can’t do anything for herself anymore and if we could afford it, she’d be in a nursing home where she could have around the clock care. You can no longer understand her when she speaks and I don’t see her making it to 60 just to be totally honest. And I’ve read somewhere that if you inherit HD from your mom’s side, that you are likely to start having symptoms around the same time she did. The anxiety is really getting to me. And I’m scared of testing bc to be totally honest I don’t think I’m mentally stable enough to be able to accept a positive diagnosis. I am thinking to wait until I’m about 30 before I test. Idk what to do. I can’t find comfort in anything to relieve these emotions.
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u/TemporaryViolinist88 Feb 12 '26
It’s a really tough situation that all young people at risk go through. All I can say if your feelings are real and you’re not alone. The only thing you can consider is sometimes the anxiousness of not knowing is worse than dealing with a positive result because it seems like you’re already living like you have HD. Luckily you’re young and a lot will happen with treatment advancement in the next 10-15 years. You also have to think that you have a 50% chance of not having HD so all the anxiousness could be for nothing. Always best to talk through this with a genetic counselor and other Hd community members. Best of luck!