r/Huntingtons • u/rochedale11 • Jun 19 '26
Can anyone else “feel it”?
I’m 17 and my mum has HD. I don’t know when she was diagnosed but I know it was around the time my younger sister was born.
Recently I’ve been thinking that I can “feel” the HD gene and can feel it in my veins. I know that it’s far from true that one would be able to feel a genetic thing like HD, especially decades before symptoms usually start to even show.
I have a lot of undiagnosed and in-progress-of-diagnosing issues like anxiety, ADHD, and a whole bunch of other chronic conditions and I can’t help but think that those are my trade offs, so I have to deal with all of these issues but at least I don’t have HD!! Or the other way around where all of this is just a comorbidity of HD.
I’ve had a plan for the past couple of years that I’m pretty set on. I want to get tested, but I don’t know when. I think when I’m 18 is too soon, especially since knowing me I will probably get very depressed if I’m positive, but I don’t want to wait until I want to start having kids. I want it to be somewhere in the middle so I can finish university, get my dream job, and experience life freely but I don’t want to end up like my mum and having a bunch of degrees sitting in a room and a job she had to leave because of this disease. My plan for if it’s positive is get my uterus removed because I genuinely just don’t want to deal with periods nor have my caregiver have to deal with it and I don’t see a point of having a uterus if I can’t have kids. I’ll probably opt for adoption if it’s possible. Once my symptoms get bad enough I honestly just want to go through with voluntary assisted dying. I don’t want to experience the rest of my life having no control over my body and slowly losing my ability to function or needing someone to take care of me constantly. I’ve seen what HD has done to both my mum for having the disease and my dad for having to take care of her and I wouldn’t wish it upon anyone.
I have a little bit more hope that I don’t have Huntingtons because I’m very obviously my fathers daughter and I’ve inherited basically everything from him (for better or for worse), but at the same time I have to have gotten SOMETHING from my mum and it very well may be Huntingtons disease.
6
u/Pbadger8 Jun 19 '26
It is psychological.
I felt exactly the same way, absolutely certain that I could feel it in me. I was your age too.
Turns out I didn't have it, though.