Dating a man with Huntington's - difficult situation

[Lizzie523]

I started dating a guy 1.5 months ago & he told me fairly early on about his diagnosis. We are both in our late 20s. He isn't showing symptoms yet & may not for some time - my friend also has it and just began displaying symptoms aged 38.

My friend is also in a relationship with this friend (we all met in the same circle) and she finds it quite hard. I certainly thought it spoke volumes about her dating him when it would affect her life.

Now I realise I've been enjoying seeing him so much, and we've slept together (wonderful!), and I kind of forgot about it.

I'm on the fence about children but want to leave myself open to that. I'm enjoying dating him & not even sure about how serious it will get. Do I need to rethink progressing things?

It's v sad when I stop and think about it

I got tested after I'd had kids. My dad was diagnosed later in life, and we'd had no idea it was in the family. My children had already been born.

I had to know so I could plan for the future, so I could attempt to have SOME control over the situation. It was one of the most terrifying things I've ever done, but for me personally, there was no decision to be made.

Every at-risk person handles it differently.

Oh OP what a situation. Huntington's is a hideous disease and has huge implications if you want a family.

I'd recommend looking at the Huntington's support website which will give you lots to think over.

There is still the issue that having a child means that those children will be raised with a father who changes drastically, in terms of personality and a mother caring for him.

I know 2 people diagnosed with it -both committed suicide once the symptoms started.

@HelpWendy

This is my life. I married a man at risk, I have one child at risk and one through IVF PGD. I can honestly say it has broken me and I’m strong.

I know of two separate families with the Huntington gene. One very good friend whose brother has started displaying symptoms. My friend decided not to get tested, he's mid forties with no symptoms yet so fingers crossed.
My other friend's MIL is now in her 70s, she's had symptoms for over 30 years, she's not a well woman but still lives independently.
So, @Imposterish, where's my book???

@NapoleonOzmolysis

www.theguardian.com/lifeandstyle/2021/oct/16/living-with-huntingtons-disease-for-our-family-the-end-of-days-is-always-close-at-hand

Another insight.

You have to love how Charlotte Raven blames her illness for everything. My brother was at university with her and she was an absolute fucking bitch.

@HollowTalk I got the impression that she acknowledges that from the article. Although the disease could have had some early influence too

@Wimblingwombling & @GranolaHolmes raise a fair point. He hasn't actually said he wants to be in a serious relationship yet. So if I do keep seeing him, I need to give that some thought/what my response would be.

The last time we were together he mentioned feeling a bit envious watching a recent relative get married & I did wonder about it. We talked about weddings a bit then. But he didn't expand on what he wants.

I assume he has had the test and that is how he knows. The next time it comes up, I will ask him about it.

Lots of sad stories here. Feel less alone knowing so many people deal with this however.

I'm tempted to carry on seeing him for a bit longer in the way I would with any potential partner. I still don't know him very well yet. Of course PPs saying once you're in love, it is harder to leave are correct too. I have a holiday coming up with friends - will also give me space away to think about it.

Huntingtons is in my late husband's family. We only found out about it about 18 months before my husband was killed. We have three children together.
My husband was going to get the genetic test because his family have all decided it was a fluke and spontaneous change in the DNA of one family member.
So far, no one has been tested despite one family member being advised to get the test.
My children wish the family member would get the test. They would like to know if they potentially carry the gene as they think it is only fair to inform any future partners if they carry the gene.
I can't advise you as to what to do. It truly is a brutal disease.

I wouldn't focus on whether you want DC as part of your decision. You could do IVF and genetically test the embryos or use donar sperm. The bigger issue is how the disease will progress for him and whether what you have together is enough to make being with him a worthwhile way to spend the next few decades of your life, especially once you become a carer for him. At 20 I would have said absolutely of my Stbxh, I didn't think it would be easy, very much not but I thought together we could get through what life would throw at us, and my illness is not less progressive like Huntington's. Turns out I was wrong. I'd hate to be trapped as his career now by him being sick. And it would be trapped because I didn't know 2 decades ago that he would end up being the same angry man as his father.

@Lizzie523 sounds like you’ve been v thoughtful throughout this but just be conscious of his response. From my experience he will be worried about how you’ll respond to his diagnosis. Whilst you may feel it’s best to treat it as a normal relationship be aware that relationships and their likelihood of success may be v poignant to him. Inevitably this wii have been something he had to process post diagnosis

@Wimblingwombling thank you. I was surprised that he brought it up so quickly but maybe he felt it best to inform dates right away?

I have a feeling it may not have mattered so much before when younger,but now in his late 20s with lots of weddings going on I can tell this is on his mind more. I realise you're right, he'll no doubt have been through quite a complex emotional/thought process about it means for him in terms of a relationship and family.

My ex has it, his father has died from it and he is basically insane at present. It explains why he was such a dick to me over the 4 years we went out. Either it had started to affect his reasoning or he was psychologically disturbed by knowing it was a possibility and it explains a lot. His dad had to give up work in his 30’s so supporting the family fell to his mother and he couldn’t look after the two kids due to his affected movement.

Huntington's is a rare condition, even though there's a few of us on this thread with personal experience. But it's an absolutely devastating disease that attacks the individual on all fronts - cognitively, emotionally and physically.

My dad was diagnosed with Huntington's and I saw firsthand how this disease ravages the individual as I was his sole carer. We were just about to move onto PEG feeding as he couldn't swallow properly any more when his lung suddenly collapsed and he died (life long smoker who developed lung cancer), so he never had to endure the very final stages of the disease.

My kind, funny, compassionate, loving dad became manipulative, selfish, demanding and aggressive. Sometimes he was still the person I knew and loved, but he was like a toddler in an adult body, with no thoughts about how his actions would affect others. I could tell you so many stories of his HD and how it changed him. Some genuinely horrifying times like when he'd been told to stop driving, I took his car keys and he pinched them back, then went driving round the streets on the pavement, and we had to send the police out after him as we were terrified he was going to knock down a child (it was 3pm). Other times were just bonkers, such as when he locked himself into the command centre for all the CT scanners at the local hospital and wouldn't open the door. Just sat in there with all this multi-million pounds equipment looking very pleased with himself!! (I'd left him on a chair to get a nurse to remove his cannula).

I am at risk. I've not been tested.

I always planned to be tested before I had children but fell pregnant accidentally with twins. I was going to terminate because I know how much people like me are hated by others, we're told explicitly that we have no business having children and potentially passing on a deadly disease. I went to the termination clinic but I couldn't bring myself to do it.

I had genetic counselling when I was pregnant. The majority of people at risk like me choose not to be tested as once you have the knowledge, it weighs very heavily on you - and you also would have an obligation to disclose it under certain circumstances. I'm now 46 and not showing any clear signs of the disease so far so I continue to hope that I might have escaped. I can't face the testing process - it's drawn out and longwinded and I can't cope with it hanging over me. Plus what's the point? Nothing they can do to help, and I'd just be sat here waiting for a miserable death. No thanks. There's a high suicide rate in people diagnosed with Huntingtons and I can understand why.

I was on a research panel for Huntington's and really heavily involved with it all. There is also the Huntington's Disease Association who have regional advisors who can support you, plus online forums to talk to others. There are usually regional meet ups too for both those with HD, carers and those at risk.

Although HD affects everyone the same way in the end, it can start differently. Some people are more affected physically while others are much more affected cognitively and emotionally. The start is insidious. Subtle changes in mood, bit of memory loss, bit of an occasional twitch. Then nightmares, growing sense of restlessness, difficulty concentrating. But all of these things could equally be caused by stress....it's so hard to pinpoint and you can be driven bonkers wondering if it's the HD that's kicking in or just the usual stresses of life.

I have a partner who is fully aware of my at risk status but chooses to be with me. He understands what this means. I've been on a real emotional journey with this over the last decade or so, and it's really hard sometimes just to try and forget that there's a shadow hanging over me.

My dad had it, and two of his four siblings have it. His mum died from it too. It's a bastard, bastard disease that destroys the person and the family.

I totally get that lots of people wouldn't want to be with someone who had a positive diagnosis. It's fucking hard, and you more or less know what the future will hold. And it's a shitty one. If you're diagnosed, the only possible respite is being knocked down by a bus before the disease takes hold. Once symptoms start to show, a person could live 10-20 years before they eventually die. That's a long time to be a carer, especially of the magnitude that's needed for HD.

OP, it's really good that you're thinking about this seriously now and you're right when you said dumping him for being HD positive is brutal - but it's understandable. If someone finished with me because of HD, I'd be absolutely devastated but I would understand why. It's not a path for everyone. The only thing I would urge you to think about is his feelings too. You're thinking about how bad you would feel if you fell in love with him then decided to walk away - in the gentlest possible way, how awful do you think he'd feel if he fell in love with you and then you walked away? If you can't do this, that's fine. It really is. But please knock it on the head sooner rather than later if that's the case because he doesn't have time to piss away. You need a very difficult and honest conversation with him about this.

Sorry for the length of my post, but HD has engulfed such a huge part of my life for years with my dad, caring for him and then my own fears about being positive, it's just something that's so, so close to my heart. I really do wish you and him all the best.

I'm a carrier of huntingtons,my mum has it,my gran and great gran both died from it,feel free to message me if you would like any information x

Has he actually had the genetic testing or is he assuming he has it because his father had it?

Tbf, you're right in loved up hormones.
I wouldn't continue with him if he really does have it.

I don't know about HD but my sister and her partner of 12 months had just bought a house together when he got a life changing diagnosis and had to give up work altogether. All my sisters dreams of kids etc went and she cared for him for 5 years before he died. I don't think the relationship would have lasted that long without this diagnosis tbh but you've got to be hard nosed to walk away from someone terminal.

@OtterAndDog

Does his disease mean he can’t have kids? Or he still wants them?

Just because I guess my gut reaction is that he would be better suited to someone who wants children ASAP. If he has only 15 years of independence left then he may want to crack on with having kids as soon as he can. But if you’re unsure then might not work.

I hope he does not have children and subject them to the threat of this most awful condition.

@DixonD People with Huntington's are able to embryo select so they don't pass the defective gene onto their children.

Your comment sounds more than a bit judgemental. Please bear in mind there are people on this thread who are personally living with or affected by Huntington's themselves and don't need any more guilt piled onto them for decisions they may have made.

So like others on this thread I have some personal experience. I grew up watching my aunt deteriorate, knowing that my mum had a 50% chance of also having the gene. They had both had children before there was even any idea about Huntington’s in the family.

A lot of people are right there is a 50% chance of passing it on and it used to be thought that this meant you either got it or you didn’t, but increasing research is showing this “grey” area. Where there are enough mutations on the gene to be diagnosed you will develop symptoms but many people are not or they are delayed much later than the typical mid 30’s. My grandad (90) and my mum (60) are in this group and neither are showing symptoms yet. But based on the older research they would have been told that they will have symptoms possibly from mid 30’s.

I decided to have the genetic testing, I couldn’t face worrying about if everytime I stumbled if it was the start of symptoms. I told my partner very early on in the relationship, as it affected if I wanted a family or not, and what type of life I would lead (no point studying to be a doctor until I was 27, if I may only have a few years to work!) He choose to stay with me, supported me through the testing, I have the gene the same as my mum. I have also had a child through PGD. I’m happy to answer any questions you might have about the testing process or the IVF with PGD.

It's a heartbreaking condition and no I would not choose this legacy for my future children.