I lived with a guy for 3 years until sadly it all became too much to deal with. His mother died of Huntington Disease a year before I met him. He had to watch her slowly deteriorate throughout his whole life. Recently, one of his older sisters took the test and it proved positive. This result seemed to have had a deep impact on him and he dealt with it by drinking. He never talked about it and his drunkeredness scared me and I had to move out.

IWe still see each other but I just don't know what to do. I try to bring up the subject and question his views on the test and he maintains he is fine. END OF STORY. Unfortunately he really is not fine. I still care about him but his refusal to deal with these issues is destroying him. Whether he has the disease of not, he cannot deal with this issue.

I have tried to find info on the web and could not find any help on "at-risk patients in denial" and would therefore welcome any comments.

Many thanks in advance for your help.

It's tough to find information on "at-risk patients in denial" because the very nature of those in this situation is to avoid any suggestion that they are "at risk". We've been asking for contributions to the FAQ and personal stories from those in this situation for a few months but haven't received anything yet. My wife tested positive but still prefers to live in denial. She'll say that she doesn't have HD but in reality she knows she does. What she's trying to tell me is that she doesn't want anyone treating her as if she has HD and she wants to live as much of a "normal" life as possible. On the FAQ on this site there is some information about young people living at risk. Until there's a cure or a significant treatment it really doesn't matter much whether or not they live in denial until they reach a point where the emotional symptoms (anger, depression, etc.) actually need treatment. Enjoy your time with him.

Steve

Hello,
There are seven steps dealing with death or a terminal illiness. The first is denial the second is anger. Everyone goes through these steps even the caregivers. But when the person is in denial the only thing that brings them out of it is reality. When the manifestations become to real to deny. Like memory loss or inability to do normal things like fiances. In everyones own time they will reach out,I believe out of fear.Be patient and allow him to come to his own terms of his condition. God Bless
Paula

Hello. I understand your frustration with the limited resources for those dealing with being at-risk. Although I was only 18 at the time, I volunteered in a program to be tested presymptomatically for HD. I tested positive and I can tell you first hand about having to deal with the aftermath of such test results. My mother is currently in a nursing home, and really we don't feel she has much time left. The hardest realization for me was that I am going to be my mother. Every visit with her, every time I heard about another complication, I saw myself in her position. What helped me to come to terms with my feelings was the help of support groups, and excellent friends. Honestly, my family couldn't do much to pull me out of my despair. It was friends, outsiders, who could listen without taking offense to my harsh feelings. Through talking my worries out with those who cared and offered support, I was able to realize that I have a healthy life ahead of me for many years. Also, research is moving dramatically in the right direction. There IS hope. My best advice to you is if you want to help your friend, listen. Don't run when things get hard, be a good friend. As scary as this all is to you, you have to realize that it can't even compare to the feas of your friend. And if interested, you can find a list of support groups for at-riskers through the hdsa web page. They are everywhere! Good luck to you and your friend.

I,ve just been reading your message and it rings so true of our family. My mum died when I was 20, after being through hell with HD for many years. This was 13 years ago and I lived in complete denial of HD ever since, until now! Whether it is getting older or the fact I am a mother myself now(something I feel deep guilt about now) I just feel HD is taking over my life. I have no symptoms whatsoever but need to find out for sure if I have the gene. I feel the odds are so stacked against me, my mums brother, a strong man who had a fantastic career in the police force was diagnosed 5 years ago, and is slowly getting worse, and my grandfather died of it too. I really feel for your partner as I know I lived in complete denail. I moved away from home so no-one knew me, I told everyone my mum died of cancer, I married and had a child. I did obviously tell my husband, but it is only in the last year or so he realises the severe implications of HD. I'm now on anti-depressants as I feel so 'not in control of my life' anymore, and am only now taking the first step to consider testing. My husband is petrified, mainly because I always used to say I'd kill myself first before ending up like my mother did. My younger brother, however is horrified at the thought of me taking a test. He can't handle anything remotely to do with HD, and will not face up to it , even now. His girlfriend needs to speak to me about it as he just clams up when it is mentioned. It's awful to have to deal with it, but I believe there will come a time when your friend will feel the need to face up to it, I hope so for your sake, as I know what my husband is going through and my brothers girlfriend too. I wish my younger brother would facwe up to it now as he's getting married soon and obviously children will be an issue. I wouldn't want anyone to feel the guilt I feel at the moment, thinking I could put my gorgeous son through the hell of HD. That again though was a product of my denial and complete blocking out of HD.I hope things work out for you both, there are others going through the same emotions, please remember that
Love Lesley