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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 03-04-15, 12:58 PM   #1
Approved Member
Join Date: Apr 2015
Location: Lancashire
Posts: 3
Default Confused and sad :(

Hello everyone, and sorry for this long first post!

Firstly thanks for all of the helpful information and encouragement on this site from what is obviously a lovely community.

I have recently met someone who is at risk of HD. Whilst we have only been dating for a short while, we fit so well together and he is such a genuine, happy and amazing person with a great outlook on life that I find myself thinking very seriously about the future. I am 29 and he is 33.

He lost his Dad very recently to HD and sadly his Mum unexpectedly just weeks before. His Dad was 66 and symptomatic for ~10 years, but was riding a bicycle until recently. He has needed more help in the past year, but I expect that losing his wife unexpectedly was a big reason for his going. I found about about my partner's HD risk indirectly, but I don't believe he intended to withhold it and we have discussed it at length already.

I am very sad, confused and worried about the future, and don't know what to do or think. I feel a bit numb to it at the moment but the past week since finding out has been horrible. He has not been tested and is undecided, but has said that he will consider testing more seriously if we were to have children. My major concern is that I have depression and whilst this is manageable in daily life, I am not sure how I would cope as a carer. I generally find the unknown very unnerving and like planning. I have spent the past year living with an elderly lady, and found her deterioration up to moving her into a home very upsetting. I don't know how I would cope with watching a partner deteriorate and go through pain. I know that there will be avenues for getting support but it is mostly my emotional state that concerns me. I have relied heavily on family for emotional support over the years, but I have to accept that I may have to face this alone; I anticipate that onset will coincide with my parents being elderly and possibly needing help too. I have an identical twin sister but she has moved to the USA.

I'm not sure what I'm asking here; perhaps I just need to talk about it with people who are informed. My initial thoughts are that I want to know, but I don't believe that I should influence his decision for testing. Obviously if the answer was that he didn't have it I would be over the moon. But I don't know what I would do if the answer was yes. What would I do? Would I stay and risk a potentially extremely difficult future for both of us, or leave? Would that make me a terrible person? Part of me is screaming to deal with some short term heartache but I just can't deal with it right now, nor bear to not have him in my life, and I also feel incredibly guilty and selfish. My family just see the short time that we have been together and are aware that we are both in a vulnerable position right now and so may have overstated emotions, so are quite negative about it.

Does anyone have any advice or has experienced anything similar? I have been doing a lot of research (I am a scientist so naturally inquisitive) but this just makes me feel worse and reinforces how unknown it can all be.

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