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Old 13-12-17, 07:53 AM   #1
RoxyT
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Default HD boyfriend- Advice really appreciated x

Hi, just thought Iíd reach out to you all on here as I am struggling to cope and canít really talk to anyone who understands the situation- would really love some advice from you as my heart is broken right now for my boyfriend who has just tested positive for HD with a CAG count of 43Ö.

Im 27 and been with my boyfriend (30) for just over 2 years now, he has only just found out he has the gene and he is understandably really struggling to digest the shocking information but wanting us to be strong together and remain together as a serious couple. I have only 2 weeks until I have to make a decision to move in with him for a years rental contract on a house.

I feel horrible and incredible guilt as I am having feelings that I may not be able to cope emotionally if I do stay with him and make this commitment of the move. I love him so very much and it has torn us both apart finding out he has the gene. I know he is absolutely heartbroken as well because he has so many dreams for us and feels like before the test he could of given me the world and now he thinks he canít.

Iíve always wanted a family and to grow old with him (thatís the fairytale I realise!) and now I am struggling to process the realisation that my dream cannot be reality without further heartbreak down the line for kids (if IVF worked and we could afford it) and myself once his disease starts to take hold :(. I feel like i am being selfish to feel like this and that anyone I talk to about it reacts that I must not love him enough to have these feelings which is so so far from the truth but I honestly feel that any happiness we have I will always have it in my mind that it is only temporary happiness and that I will be eventually left alone, heartbroken and with more stress than I can handle if I stay with him. The idea of seeing him deteriorate haunts me because I love and care about him so much.

I have educated myself thoroughly on the disease and I try my best to stay positive but I feel an incredulous sense of inner turmoil that I canít shake or tame. He is an amazing person and I just refuse to believe that life can be this unfair.

His mum died of the disease just before I met him and we have had our fair share of ups and downs before the test due to his emotional issues and apathy off the back of that which I try to be understanding of but sometimes we would have enormous fights about his inability to be there for me or care about any problems I may have so it has always affected our relationship even before the result. I put it all down to the enormous strain of the disease and being able to cope and since he found out the result he has been nothing short of perfect and opened up to me more than he ever has before on an emotional level because he is petrified of losing me.

Is it selfish of me to be wondering if I can endure a future together? :( Online I see that the expected age of onset is 42-45 for this CAG countÖ.all i can think is that I will only be 39/40 years of age when it all kicks in and that makes me incredibly scared and sad and shatters my dream of us having a family together.

I love him so much and I feel at this point either option of staying or leaving will kill me, I also worry about people judging me if I do leave him as I donít want to be seen as weak, uncaring or selfish :(I feel utterly devastated at the moment and I wonder if I can cope with this feeling as an ongoing thing in my life to deal with. I donít know if I will ever be able to manage this piece of news with a clear head and part of me believes there is more than one person out there for us allÖ.any advice would be much appreciated as Iím totally lost on what to do and have this added pressure of us planning to move in together so soon :(

Thanks so much to anyone who has words of wisdom on this <3
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Old 13-12-17, 11:01 AM   #2
Trish
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Default Re: HD boyfriend- Advice really appreciated x

Quote:
Originally Posted by RoxyT View Post
Hi, just thought Iíd reach out to you all on here as I am struggling to cope and canít really talk to anyone who understands the situation- would really love some advice from you as my heart is broken right now for my boyfriend who has just tested positive for HD with a CAG count of 43Ö.

Im 27 and been with my boyfriend (30) for just over 2 years now, he has only just found out he has the gene and he is understandably really struggling to digest the shocking information but wanting us to be strong together and remain together as a serious couple. I have only 2 weeks until I have to make a decision to move in with him for a years rental contract on a house.

I feel horrible and incredible guilt as I am having feelings that I may not be able to cope emotionally if I do stay with him and make this commitment of the move. I love him so very much and it has torn us both apart finding out he has the gene. I know he is absolutely heartbroken as well because he has so many dreams for us and feels like before the test he could of given me the world and now he thinks he canít.

Iíve always wanted a family and to grow old with him (thatís the fairytale I realise!) and now I am struggling to process the realisation that my dream cannot be reality without further heartbreak down the line for kids (if IVF worked and we could afford it) and myself once his disease starts to take hold :(. I feel like i am being selfish to feel like this and that anyone I talk to about it reacts that I must not love him enough to have these feelings which is so so far from the truth but I honestly feel that any happiness we have I will always have it in my mind that it is only temporary happiness and that I will be eventually left alone, heartbroken and with more stress than I can handle if I stay with him. The idea of seeing him deteriorate haunts me because I love and care about him so much.

I have educated myself thoroughly on the disease and I try my best to stay positive but I feel an incredulous sense of inner turmoil that I canít shake or tame. He is an amazing person and I just refuse to believe that life can be this unfair.

His mum died of the disease just before I met him and we have had our fair share of ups and downs before the test due to his emotional issues and apathy off the back of that which I try to be understanding of but sometimes we would have enormous fights about his inability to be there for me or care about any problems I may have so it has always affected our relationship even before the result. I put it all down to the enormous strain of the disease and being able to cope and since he found out the result he has been nothing short of perfect and opened up to me more than he ever has before on an emotional level because he is petrified of losing me.

Is it selfish of me to be wondering if I can endure a future together? :( Online I see that the expected age of onset is 42-45 for this CAG countÖ.all i can think is that I will only be 39/40 years of age when it all kicks in and that makes me incredibly scared and sad and shatters my dream of us having a family together.

I love him so much and I feel at this point either option of staying or leaving will kill me, I also worry about people judging me if I do leave him as I donít want to be seen as weak, uncaring or selfish :(I feel utterly devastated at the moment and I wonder if I can cope with this feeling as an ongoing thing in my life to deal with. I donít know if I will ever be able to manage this piece of news with a clear head and part of me believes there is more than one person out there for us allÖ.any advice would be much appreciated as Iím totally lost on what to do and have this added pressure of us planning to move in together so soon :(

Thanks so much to anyone who has words of wisdom on this <3
Hi Hun

I could write reams and reams about my own experience but that wouldn't really help I don't think. Me and hubs didn't want kids so that took out a whole level of emotions so my taking up with/staying with Hubs was made a lot easier.

What I would say though is, especially with the time-line of 2 weeks where you need to make a big decision is it worth being very clinical and removing the emotion from it just for a few minutes and stripping things back?

I'm thinking of things like this:

Do I love him? Yes/No

Does his HD status mean he is going to die tomorrow? Yes/No

Does a CAG of 43 mean he has every chance of getting late stage HD where we could still have many years before it actually takes hold? Yes/No

Even if it takes years to take hold do I feel our relationship is strong enough to cope? Yes/No

Are there options to have HD free children? Yes/No [The answer for that one by the way is a resounding Yes and please don't assume you will have to pay for IVF. There are options where people are supported]

Is there hope for the future? Yes/No [If in the UK, unless you were our of the country or didn't have access to the BBC News all day you will have seen there has been a breakthrough!]

If I move in with BF in 2 weeks does that mean I can never leave him in the future? Yes/No [Funnily enough, I believe couples split up who don't have HD in the storyline. People even get divorces for other reasons than HD]

Will people think me selfish for leaving if I decide to end the relationship now? Yes/No [I believe the answer to that one should be if they are petty enough to think I would leave someone just for the HD element they obviously don't know me well enough to judge me in the first place so who gives a flying >>> what they think anyway as it's my life not theirs.]

Lots of other things I could post up but I prefer to end on a little slideshow I did of me and Hubs. He was 49 when he died; we married in 1988 when both 27 and I knew he had a 50/50 chance. He was diagnosed in 2005 but I'd known for years he was symptomatic although knowing it was probably HD I was able to cope much better than I would have had I been oblivious and thought it was him or our relationship that was causing moods and stuff. In essence I am so grateful we had a relationship where I knew who was the enemy (HD not him) and I was able to fight HD with him and give her (I personalised HD as a female beatch trying to steal hubby lol) a good run for her money as his co-fighter.

For Slideshow Click Here
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Old 13-12-17, 11:57 AM   #3
Ange<3
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Default Re: HD boyfriend- Advice really appreciated x

Hi Roxy,

I am so sorry you have to be here and having to type that message my heart really goes out for you both. I can completely understand where you are coming from and exactly how bad you are both feeling. I tested positive in August and my life has been like a roller coaster since.

My partner was extremely up and down about the result. He did not think I would have it. He had finished our 2 year relationship over the result a month later and told me he seen me and everything completely differently after my positive result. He could not see past what was going to happen to me. He also did not think he could cope emotionally. He already suffers from depression. He eventually realised after we had split that the Huntingtonís did not matter. I am still me and we still love each other the same.

The truth is it is very uncommon to die from old age these days. Anything can happen to anyone at any time. I lost my Mam from cancer when she was 50 and she did not know this was going to happen to her. You hear of so many young people losing their lives to so many different things. Your partner is still the same person and this is not going to affect him for a long time and you can both still plan so many things together. You can still have a family that is Huntingtonís disease free there is information on here on PGF (which is free in the uk my Brothers partner has been referred for it or you can get the embryo tested and have the option to terminate the pregnancy).

They donít tend to go from your CAG count regarding age of onset anymore. Two people with the exact CAG count can have completely different ages of onset. I donít know if you have seen but there has been a break through with a new trial for Huntingtonís and it slows the process of it down. They say itís been the biggest breakthrough in 50 years. If there was ever a time to get diagnosed with Huntingtonís it is now. The technology and medication have come so far now and is only going to get better.

It doesnít really matter what anyone else thinks and you have to be sure on your decision as it is wrong to stay with him for the wrong reasons. But at the same time you could choose not to be with him, find someone else and they could pass away from something else at an earlier age then when your partner could have got the Huntingtonís. Or the medication could get so good it might hardly affect him. You just donít know what is around the corner.

You have both just been hit with a huge ton of bricks and will both be finding everything extremely hard at the moment. You will have your good days and your bad days and even though it is him that has been diagnosed with the gene it is sort of like you have too because it is still something that will affect you.

My only advice can be to think hard about what you want. Would he stay with you if you were the one with the Huntingtonís. You never know it could end up being the other way and you may need his care earlier than he needs yours. No one has the perfect genes, everyone has a faulty gene in them somewhere and it can take the slightest thing to trigger that off. Anyone can die from anything at any age; the only difference is that with Huntingtonís you can be tested to see if you have this whereas everything else just happens without you knowing it is going to happen.

I am here if you need to chat about anything. I know how awful this is especially just after diagnosis. You can both get through this and even though you feel like these awful feelings will stay forever they wonít. My partner looks at me exactly the same as he used to now and we are both just as happy as we were before the diagnosis again.

Huge hugs Ange xx
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Old 13-12-17, 12:09 PM   #4
Ange<3
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Default Re: HD boyfriend- Advice really appreciated x

Quote:
Originally Posted by RoxyT View Post
Hi, just thought Iíd reach out to you all on here as I am struggling to cope and canít really talk to anyone who understands the situation- would really love some advice from you as my heart is broken right now for my boyfriend who has just tested positive for HD with a CAG count of 43Ö.

Im 27 and been with my boyfriend (30) for just over 2 years now, he has only just found out he has the gene and he is understandably really struggling to digest the shocking information but wanting us to be strong together and remain together as a serious couple. I have only 2 weeks until I have to make a decision to move in with him for a years rental contract on a house.

I feel horrible and incredible guilt as I am having feelings that I may not be able to cope emotionally if I do stay with him and make this commitment of the move. I love him so very much and it has torn us both apart finding out he has the gene. I know he is absolutely heartbroken as well because he has so many dreams for us and feels like before the test he could of given me the world and now he thinks he canít.

Iíve always wanted a family and to grow old with him (thatís the fairytale I realise!) and now I am struggling to process the realisation that my dream cannot be reality without further heartbreak down the line for kids (if IVF worked and we could afford it) and myself once his disease starts to take hold :(. I feel like i am being selfish to feel like this and that anyone I talk to about it reacts that I must not love him enough to have these feelings which is so so far from the truth but I honestly feel that any happiness we have I will always have it in my mind that it is only temporary happiness and that I will be eventually left alone, heartbroken and with more stress than I can handle if I stay with him. The idea of seeing him deteriorate haunts me because I love and care about him so much.

I have educated myself thoroughly on the disease and I try my best to stay positive but I feel an incredulous sense of inner turmoil that I canít shake or tame. He is an amazing person and I just refuse to believe that life can be this unfair.

His mum died of the disease just before I met him and we have had our fair share of ups and downs before the test due to his emotional issues and apathy off the back of that which I try to be understanding of but sometimes we would have enormous fights about his inability to be there for me or care about any problems I may have so it has always affected our relationship even before the result. I put it all down to the enormous strain of the disease and being able to cope and since he found out the result he has been nothing short of perfect and opened up to me more than he ever has before on an emotional level because he is petrified of losing me.

Is it selfish of me to be wondering if I can endure a future together? :( Online I see that the expected age of onset is 42-45 for this CAG countÖ.all i can think is that I will only be 39/40 years of age when it all kicks in and that makes me incredibly scared and sad and shatters my dream of us having a family together.

I love him so much and I feel at this point either option of staying or leaving will kill me, I also worry about people judging me if I do leave him as I donít want to be seen as weak, uncaring or selfish :(I feel utterly devastated at the moment and I wonder if I can cope with this feeling as an ongoing thing in my life to deal with. I donít know if I will ever be able to manage this piece of news with a clear head and part of me believes there is more than one person out there for us allÖ.any advice would be much appreciated as Iím totally lost on what to do and have this added pressure of us planning to move in together so soon :(

Thanks so much to anyone who has words of wisdom on this <3
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Old 13-12-17, 07:47 PM   #5
Gabby
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Default Re: HD boyfriend- Advice really appreciated x

Quote:
Originally Posted by RoxyT View Post
Hi, just thought Iíd reach out to you all on here as I am struggling to cope and canít really talk to anyone who understands the situation- would really love some advice from you as my heart is broken right now for my boyfriend who has just tested positive for HD with a CAG count of 43Ö.

Im 27 and been with my boyfriend (30) for just over 2 years now, he has only just found out he has the gene and he is understandably really struggling to digest the shocking information but wanting us to be strong together and remain together as a serious couple. I have only 2 weeks until I have to make a decision to move in with him for a years rental contract on a house.

I feel horrible and incredible guilt as I am having feelings that I may not be able to cope emotionally if I do stay with him and make this commitment of the move. I love him so very much and it has torn us both apart finding out he has the gene. I know he is absolutely heartbroken as well because he has so many dreams for us and feels like before the test he could of given me the world and now he thinks he canít.

Iíve always wanted a family and to grow old with him (thatís the fairytale I realise!) and now I am struggling to process the realisation that my dream cannot be reality without further heartbreak down the line for kids (if IVF worked and we could afford it) and myself once his disease starts to take hold :(. I feel like i am being selfish to feel like this and that anyone I talk to about it reacts that I must not love him enough to have these feelings which is so so far from the truth but I honestly feel that any happiness we have I will always have it in my mind that it is only temporary happiness and that I will be eventually left alone, heartbroken and with more stress than I can handle if I stay with him. The idea of seeing him deteriorate haunts me because I love and care about him so much.

I have educated myself thoroughly on the disease and I try my best to stay positive but I feel an incredulous sense of inner turmoil that I canít shake or tame. He is an amazing person and I just refuse to believe that life can be this unfair.

His mum died of the disease just before I met him and we have had our fair share of ups and downs before the test due to his emotional issues and apathy off the back of that which I try to be understanding of but sometimes we would have enormous fights about his inability to be there for me or care about any problems I may have so it has always affected our relationship even before the result. I put it all down to the enormous strain of the disease and being able to cope and since he found out the result he has been nothing short of perfect and opened up to me more than he ever has before on an emotional level because he is petrified of losing me.

Is it selfish of me to be wondering if I can endure a future together? :( Online I see that the expected age of onset is 42-45 for this CAG countÖ.all i can think is that I will only be 39/40 years of age when it all kicks in and that makes me incredibly scared and sad and shatters my dream of us having a family together.

I love him so much and I feel at this point either option of staying or leaving will kill me, I also worry about people judging me if I do leave him as I donít want to be seen as weak, uncaring or selfish :(I feel utterly devastated at the moment and I wonder if I can cope with this feeling as an ongoing thing in my life to deal with. I donít know if I will ever be able to manage this piece of news with a clear head and part of me believes there is more than one person out there for us allÖ.any advice would be much appreciated as Iím totally lost on what to do and have this added pressure of us planning to move in together so soon :(

Thanks so much to anyone who has words of wisdom on this <3

So Sorry I have been where you are only difference we were a little older . Not sure i can advise you what to do only you know but don't stay because you will feel guilty or because what others say .
In my mind i loved my man and i was standing by him in sickness and in health to death us do part . Had all the feelings you have still do 9 years on we have been married 7 .
We found a way of dealing with it we chose to do all the things we wonted to do our Bucket list cost permitting and enjoy each day .

Hope you find whats right for you
take Care

Gabby
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Old 14-12-17, 03:30 AM   #6
shiraz
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Default Re: HD boyfriend- Advice really appreciated x

Roxy...sorry you find yourself in such turmoil and you could easily say your predicament is just part of love and life. I was married before to a man who turned out to be a violent (alcoholic) man. I found courage to divorce him and fell madly in love with another man, my Husband, who had odd, endearing little ways and I adored him. Turns out he was displaying early signs of hd. We've been together 27 years and for sure we have been through some wretched times but, hand on heart, he's still my man. Thereagain...when things got tough we were married and I live by "in sickness and in health". If you are having doubts, if you are afraid, if you "want a life"...don't beat yourself up. I didn't know he had hd....hindsight is a marvellous thing, and also a barsteward....follow your heart and don't do what you think because others expect it of you. Don't be pressured by yourself, don't do it out of guilt, do what you feel is right and what you know you can cope with. Do not be judged by others. If you are having doubts already....then maybe....you actually know the answer? But just hate to admit it to yourself? Live...love...prosper Roxy
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Old 14-12-17, 01:18 PM   #7
RoxyT
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Default Re: HD boyfriend- Advice really appreciated x

Hi Trish,

Thank you so much for your lovely support and advice- I had a look at the video of you and your husband and it was really touching to see how fantastic your life was together despite the disease.

I agree about the clinical way of looking at it and that is what I am trying to do, just feel like my head and heart are in battle with eachother...I feel like he is already having mood swings etc and it has been affecting our relationship but it is extremely difficult to know if it is due to HD or not and I feel this is swaying my decision.

I really appreciate your help on this as it is really nice to hear from someone so closely related to HD.

I'll let you know what I decide in a weeks time.

Thanks Trish and I love your personification of the bitch stealing your hubby- made me chuckle! x
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Old 14-12-17, 01:55 PM   #8
RoxyT
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Hi Ange,

Thank you for your support and response to my message- it was really touching to hear your story and be able to relate to it from another angle.

I'm also so pleased to hear from you that the emotional rollercoaster ebs and you and your boyfriend were able to figure things out with a clear mind- really happy for you both as I know how you are feeling, it's really tough and nobody should have to go through this as a couple- relationships are blooming hard as it is!

What worries me the most is that I am unable to think straight still and I feel that I can't talk to him about my worries of moving in together because then he will think it's due to the disease and that I don't want to be with him whereas it's more just that I need time to digest things because I'm emotionally confused :( just don't want to hurt his feelings. He is quite closed emotionally anyway so it's been extremely difficult since the diagnosis- as well as us both being hectic at work!

If you don't mind me asking how did you react when your boyfriend was confused? I feel like so far he has struggled to manage my feelings as well as his which I don't blame him for but i think he has no idea how much is has been affecting me too and is acting like nothing has changed which I am unable to do at the moment :(. He also isn't really respecting that I'm upset which is making me doubt the relationship.

The way I am trying to look at things is to overlook the HD and just focus on our relationship together and whether I would move in and commit to him if he didn't have it in the first place. (Part of me knows the main reason we've had problems is due to his irrational mood swings and lack of empathy and I'm not sure if it can be early symptoms already or whether this is just him which is confusing). Do you mind me asking what your CAG count is and whether you are experiencing anything like this with your partner?

Thanks so much for telling me about the PGF section- that is very hopeful and great to see there are options going forward and equally it is incredible news about the advancement and I know he is also very positive about this and you both must be too!

I really appreciate you getting in touch, such a relief knowing others understand the strain it puts on relationships but knowing there is a positive outcome :)

Hope you are finding it easier post the breakthrough news- lots of hope there! x

Roxy xx





Quote:
Originally Posted by Ange<3 View Post
Hi Roxy,

I am so sorry you have to be here and having to type that message my heart really goes out for you both. I can completely understand where you are coming from and exactly how bad you are both feeling. I tested positive in August and my life has been like a roller coaster since.

My partner was extremely up and down about the result. He did not think I would have it. He had finished our 2 year relationship over the result a month later and told me he seen me and everything completely differently after my positive result. He could not see past what was going to happen to me. He also did not think he could cope emotionally. He already suffers from depression. He eventually realised after we had split that the Huntingtonís did not matter. I am still me and we still love each other the same.

The truth is it is very uncommon to die from old age these days. Anything can happen to anyone at any time. I lost my Mam from cancer when she was 50 and she did not know this was going to happen to her. You hear of so many young people losing their lives to so many different things. Your partner is still the same person and this is not going to affect him for a long time and you can both still plan so many things together. You can still have a family that is Huntingtonís disease free there is information on here on PGF (which is free in the uk my Brothers partner has been referred for it or you can get the embryo tested and have the option to terminate the pregnancy).

They donít tend to go from your CAG count regarding age of onset anymore. Two people with the exact CAG count can have completely different ages of onset. I donít know if you have seen but there has been a break through with a new trial for Huntingtonís and it slows the process of it down. They say itís been the biggest breakthrough in 50 years. If there was ever a time to get diagnosed with Huntingtonís it is now. The technology and medication have come so far now and is only going to get better.

It doesnít really matter what anyone else thinks and you have to be sure on your decision as it is wrong to stay with him for the wrong reasons. But at the same time you could choose not to be with him, find someone else and they could pass away from something else at an earlier age then when your partner could have got the Huntingtonís. Or the medication could get so good it might hardly affect him. You just donít know what is around the corner.

You have both just been hit with a huge ton of bricks and will both be finding everything extremely hard at the moment. You will have your good days and your bad days and even though it is him that has been diagnosed with the gene it is sort of like you have too because it is still something that will affect you.

My only advice can be to think hard about what you want. Would he stay with you if you were the one with the Huntingtonís. You never know it could end up being the other way and you may need his care earlier than he needs yours. No one has the perfect genes, everyone has a faulty gene in them somewhere and it can take the slightest thing to trigger that off. Anyone can die from anything at any age; the only difference is that with Huntingtonís you can be tested to see if you have this whereas everything else just happens without you knowing it is going to happen.

I am here if you need to chat about anything. I know how awful this is especially just after diagnosis. You can both get through this and even though you feel like these awful feelings will stay forever they wonít. My partner looks at me exactly the same as he used to now and we are both just as happy as we were before the diagnosis again.

Huge hugs Ange xx
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Old 15-12-17, 02:42 PM   #9
Ange<3
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Quote:
Originally Posted by RoxyT View Post
Hi Ange,

Thank you for your support and response to my message- it was really touching to hear your story and be able to relate to it from another angle.

I'm also so pleased to hear from you that the emotional rollercoaster ebs and you and your boyfriend were able to figure things out with a clear mind- really happy for you both as I know how you are feeling, it's really tough and nobody should have to go through this as a couple- relationships are blooming hard as it is!

What worries me the most is that I am unable to think straight still and I feel that I can't talk to him about my worries of moving in together because then he will think it's due to the disease and that I don't want to be with him whereas it's more just that I need time to digest things because I'm emotionally confused :( just don't want to hurt his feelings. He is quite closed emotionally anyway so it's been extremely difficult since the diagnosis- as well as us both being hectic at work!

If you don't mind me asking how did you react when your boyfriend was confused? I feel like so far he has struggled to manage my feelings as well as his which I don't blame him for but i think he has no idea how much is has been affecting me too and is acting like nothing has changed which I am unable to do at the moment :(. He also isn't really respecting that I'm upset which is making me doubt the relationship.

The way I am trying to look at things is to overlook the HD and just focus on our relationship together and whether I would move in and commit to him if he didn't have it in the first place. (Part of me knows the main reason we've had problems is due to his irrational mood swings and lack of empathy and I'm not sure if it can be early symptoms already or whether this is just him which is confusing). Do you mind me asking what your CAG count is and whether you are experiencing anything like this with your partner?

Thanks so much for telling me about the PGF section- that is very hopeful and great to see there are options going forward and equally it is incredible news about the advancement and I know he is also very positive about this and you both must be too!

I really appreciate you getting in touch, such a relief knowing others understand the strain it puts on relationships but knowing there is a positive outcome :)

Hope you are finding it easier post the breakthrough news- lots of hope there! x

Roxy xx
No problem . It just really stood out to me as it sounded so similar to how we were and I literally would of never thought things would have been how they are now when I found out just 4 months ago.

Thank you . Your right they definitely shouldnít because they are already hard..but at least we canít complain of having a boring relationship!

If you feel like you are unable to think straight just tell him that. Iím sure he will understand and will appreciate you being honest with him. Why donít you maybe suggest postponing the move and say it is until you both can digest and get over the initial shock of having such big news? Moving is quite stressful and the last thing I would of wanted to do a few weeks after I found out as I just wasnít with it. I am the same and quite emotionally closed and I didnít really share with my partner how much it had affected me because I could tell he was already feeling funny about the situation even though he didnít actually say it then. I thought if I put up some sort of front it might not of seemed as bad as it was to him. I also acted like everything was normal but he also never really brought it up so I didnít think he wanted to talk about it. I think I would of preferred him to be completely open and honest from when I found out, but I think he felt guilty. Because he didn't explain how he was feeling it was a total shock when all of a sudden a month later he said he didn't feel the same since getting the news and didn't want to be with me and for me I felt any steps forward that I had managed to do in that time it was another huge blow for me and I was back in square one again. But at the same time it was the time that he needed to get his thoughts together which was what made him change his mind.

I donít have irrational mood swings as far as I am aware. I get annoyed about certain things but no more than what any other girl would get annoyed about. Empathy however I did start to notice after diagnosis that I did not seem to have any for anyone. Things that I used to find extremely sad I had no emotion for anyone elses circumstances for example if a friend was explaining how much of a bad day they had had I would literally be sitting calling them in my head because theyre life was not as bad as mine and think how dare they sit and complain over such stupid things and I knew it was unfair to think it but I couldnít stop myself. However that feeling is now going. My CAG count is 46 but it does not mean to say I would experience symptoms before him.

Yeah the PGF is definitely worth a think about If you were going to stay with him I think itís amazing what they can do.

I think any relationship that can get through a blow like this is a relationship that can last forever. I am definitely finding it easier post break through news but glad my partner accepted the Huntigtons before the news break through come out when he thought there was no real hope for people with Huntingtons.

I would try not to push yourself into anything to much or rush into anything as it wont do you any favours. I think your partner should appreciate everything from your angle too because this has been such a huge blow for both of you not just him. Wish you all the best with whichever route you take .

Ange xx
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