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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 07-08-17, 02:44 PM   #1
HB2018
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Join Date: Aug 2017
Posts: 3
Default Married to someone at risk

Hi group - first off please let me say my thoughts and prayers are with all of you affected by HD.

I would like to ask a few questions to get some opinions on my now estranged wife.

We were together 9 months then married in april. I knew about her dad having late stage HD, she never told me her at risk status until later on, nor did she discuss the implications, however I knew through my own research and I loved her enough to take the risk. I figured if she gets it, I will handle it. She wanted kids, never discussed the genetic risk nor the pressure she must face with being at risk along with her siblings whom seem never to discuss the issue.

Our marriage was good at first but then we fought, I found her very passive aggressive and unable to forgive always holding a grudge from bickering we did. Always holding resentment from fights that could have been resolved. Also paranoia, accusing me of all sorts putting me under pressure enough to want to explode. I made some mistakes such as being insecure/emotional/frustrated and promised I would change, went to counselling etc, however she became more and more emotionally distant, apathetic and disinhibited. Her whole family, eventually cut me off with no explanation. I was ready to take a big risk for them and help my wife look after her dad! Eventually my pleas from the no communication were ignored so much she just sent a text saying this is over do not contact me nor my family again. No explanation just 2 months of cold shoulder and then that - no reply when asked how do u want to divorce and an offer of friendship. I have been very civil throughout.

She is 34, it seems unable to process what has happened between us, unable to decide what she wants - 2 months into the marriage she said she eas confused and started cutting off communication. No response. Just dead silence. Unable to talk or process emotions.

My parents whom are elderly had no idea about HD, when they met her dad they said she has the same thing her dad has.

I always noticed my wife to have certain facial grimace which I always thought was a smile. However now after everything, I think it's early signs of chorea as it was constant and at times when smiling is not appropriate. I noticed a twitch in her cheek.

It adds up to me - she must be under so much intense emotional pressure due to her at risk status, that she keeps it couped up inside, I was an escape for her, it was her idea to get married, then when the going got a bit tough, she left without explanation.

I wander am I reading in to too much here or does this sound like HD?

I am totally cut off from her and the family now, very wierd behaviour but then I imagine there at risk status is more stressful than anything you can imagine. I have already forgiven them, and I care for my wife - I feel bad for her if it is true.

From my research, parents opinion, it seems true.

She has always shown a general lack of concern, self centredness, detachment, and just walked away from a marriage without even trying after 2 months and with no contact about divorce. I honestly believe she doesn't care and will not seek divorce. She always spent my money and never spent her own - I believe now she is in denial about HD and knows, perhaps her family know too, they are trying to have children without thinking about the implications.

Please advise if I am wrong and how to handle her family bearing in mind they have shut me out and not much I can do. I can't reach out to them - it seems they hate me yet I have so much sympathy for them!

I do care about her but I doubt the marriage can be saved. I did have my faults - I argued too much, insecure etc, have resolved them through counselling, however she does not care, everyone I know says what I did is not enough to divorce you work through things. She seemed unable to work through, compromise, see through my eyes nor see my efforts.

Bless her if it's true.

All the best to you.
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Old 07-08-17, 08:36 PM   #2
LECS
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Join Date: Jul 2012
Location: Shrewsbury
Posts: 207
Default Re: Married to someone at risk

Quote:
Originally Posted by HB2018 View Post
Hi group - first off please let me say my thoughts and prayers are with all of you affected by HD.

I would like to ask a few questions to get some opinions on my now estranged wife.

We were together 9 months then married in april. I knew about her dad having late stage HD, she never told me her at risk status until later on, nor did she discuss the implications, however I knew through my own research and I loved her enough to take the risk. I figured if she gets it, I will handle it. She wanted kids, never discussed the genetic risk nor the pressure she must face with being at risk along with her siblings whom seem never to discuss the issue.

Our marriage was good at first but then we fought, I found her very passive aggressive and unable to forgive always holding a grudge from bickering we did. Always holding resentment from fights that could have been resolved. Also paranoia, accusing me of all sorts putting me under pressure enough to want to explode. I made some mistakes such as being insecure/emotional/frustrated and promised I would change, went to counselling etc, however she became more and more emotionally distant, apathetic and disinhibited. Her whole family, eventually cut me off with no explanation. I was ready to take a big risk for them and help my wife look after her dad! Eventually my pleas from the no communication were ignored so much she just sent a text saying this is over do not contact me nor my family again. No explanation just 2 months of cold shoulder and then that - no reply when asked how do u want to divorce and an offer of friendship. I have been very civil throughout.

She is 34, it seems unable to process what has happened between us, unable to decide what she wants - 2 months into the marriage she said she eas confused and started cutting off communication. No response. Just dead silence. Unable to talk or process emotions.

My parents whom are elderly had no idea about HD, when they met her dad they said she has the same thing her dad has.

I always noticed my wife to have certain facial grimace which I always thought was a smile. However now after everything, I think it's early signs of chorea as it was constant and at times when smiling is not appropriate. I noticed a twitch in her cheek.

It adds up to me - she must be under so much intense emotional pressure due to her at risk status, that she keeps it couped up inside, I was an escape for her, it was her idea to get married, then when the going got a bit tough, she left without explanation.

I wander am I reading in to too much here or does this sound like HD?

I am totally cut off from her and the family now, very wierd behaviour but then I imagine there at risk status is more stressful than anything you can imagine. I have already forgiven them, and I care for my wife - I feel bad for her if it is true.

From my research, parents opinion, it seems true.

She has always shown a general lack of concern, self centredness, detachment, and just walked away from a marriage without even trying after 2 months and with no contact about divorce. I honestly believe she doesn't care and will not seek divorce. She always spent my money and never spent her own - I believe now she is in denial about HD and knows, perhaps her family know too, they are trying to have children without thinking about the implications.

Please advise if I am wrong and how to handle her family bearing in mind they have shut me out and not much I can do. I can't reach out to them - it seems they hate me yet I have so much sympathy for them!

I do care about her but I doubt the marriage can be saved. I did have my faults - I argued too much, insecure etc, have resolved them through counselling, however she does not care, everyone I know says what I did is not enough to divorce you work through things. She seemed unable to work through, compromise, see through my eyes nor see my efforts.

Bless her if it's true.

All the best to you.
Hi. Welcome to the board and I am so sorry you find yourself in this situation, my heart goes out to you. I'm not sure what you can do. I don't want to tell you my circumstances because you might then consider your suspicions as to your estranged wife's behaviour are due to HD and as she is untested no one could be certain. I doubt you will be able to influence her in her decision making as to whether she needs to seek advice. You could write to her telling her that you are confused as to why she is no longer communicating with you and what you would prefer to happen. You could also seek advice and support for how you have been left feeling, regardless of her actions. Sending you lots of best wishes and hope that you find some peace in amongst it all. Lily
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Old 07-08-17, 09:57 PM   #3
HB2018
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Default Re: Married to someone at risk

Hi Lily, thank you for your reply.

I have come to terms with it all - however I am unable to reach out to her since she has asked me to never contact her again, strangely, and has never been able to engage in conversation for the last few months. For me it seems, she has been unable to process the complex emotions, she has also been unable to focus on more than one thing at a time such as a map, she also definitely has a facial tick.

I hope she would be a friend so I can talk to her, however I am dealing with apathy here on a large scale.
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Old 09-08-17, 02:31 AM   #4
CountryGirl
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Join Date: Apr 2015
Posts: 6
Default Re: Married to someone at risk

Hi there,

What a difficult time you've had, regardless of whether your wife ends up being diagnosed with HD. The sudden end to your marriage must have come as such a shock and left you reeling. It's not surprising that you're finding it tough to let it all go and move on.

I think so often as humans we look for the "reason" that things happen, when ultimately it doesn't really change anything. And sometimes there just isn't an easily identifiable reason. From what you've described, I don't think it would be unfair to say that it sounds as though your wife may possibly have HD. However, it's such a subjective condition and it's so easy to point to what we believe are symptoms when really they're due to something different entirely. I'm at risk myself but untested and I could give you a long list of symptoms where I've convinced myself that it's HD - but my partner doesn't see any signs. The start of this disease can be so insidious and mimic many other things such as personality disorders or even just anxiety so it's almost impossible to tell in the early stages without being tested.

But I guess the point of all this is that does it really matter if your wife has HD? It sounds as if even if she is diagnosed she doesn't want a future with you, no matter how brutal this may feel. It sounds as if you've done everything you possibly could and that maybe you just need to accept that maybe she has HD, maybe she doesn't, but it doesn't affect your life any more. Is there a specific reason you're still so emotionally invested? Are you hoping for some kind of reconciliation? I guess those are the real questions here. I agree with Lily, some kind of relationship counselling might help you process what's gone on. You've been through so much and been dealt a difficult hand with the question mark over the diagnosis. HD isn't just difficult for those at risk but for loved ones too and I think you'd benefit from talking about all of this.

Sending love - Sam.
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Old 09-08-17, 08:57 AM   #5
HB2018
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Join Date: Aug 2017
Posts: 3
Default Re: Married to someone at risk

Hi - I think it's because it is all so recent.

Also I still care about her but I agree with your sentiments. What I am trying to understand is has this been caused by HD or more to do with her real personality.

Additionally, I am preparing to move on - but I would like to be friends. She does not communicate however, and she does not seem to want to divorce either, really strange, offered to divorce amicably, no reply.
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