From the perspective of a caregiving wife.
First let me say how difficult it is to write about this painful time in our lives. However since I had no one to talk to at the time, my hopes are that this may help someone. Some people may be offended; I hope not. This is not meant to offend at all but it is a very difficult subject to read about...
First of all let me explain that we only found out about HD in the family just a few years ago. The story I'm about to tell you really started way before we had the knowledge of this disease or even heard about this disease.
When my husband and I first married, we had a good sex life, normal by most standards in most marriages, I'm sure. We both worked, then had kids and grabbed time together whenever we could. After being together about 10 years I guess, I began to notice some changes in our sex life. Very subtly at first, we seemed to be out of 'sync' for a year or so. I couldn't put my finger on the problem but I was experiencing some confusion with the act of intercourse with my husband.
As time went on it became more and more obvious that intercourse was beginning to be a confusing struggle. The best way to describe it is we were no longer matching our movements. We were missing the natural rhythm that usually comes very naturally. Now I found myself trying to think ahead this time. My husband is extremely sensitive about his performance (aren't we all?) and whenever we had discussed our likes or dislikes in the past he has gotten very defensive and hurt so I knew to discuss or ask about this was out of the question. Eventually it got worse and worse until about 80% of the time the act was a failure for him. I'm sure he also wasn't sure what was going on. I would try to take the lead and change positions so I could be more in control but it never seemed to help. Eventually it became a chore and I was a nervous wreck whenever he would initiate sex. I felt I must have been doing something wrong. Maybe he's trying something new and I just could not get the hang of it. Once or twice I said jokingly, "Hey we better get our act together" and we'd laugh but he was very self-conscious and any further discussion just wasn't going to happen. I began to dread it and hoped he'd fall asleep or I came up with excuses like you wouldn't believe because I knew that what we started would most likely end up in failure.
When it began to get really bad he would tell me that I wasn't doing enough to excite him and made a few suggestions that were distasteful to me. Now I won't write about that as I respect everyone's thoughts on sex and all and what may be distasteful to me may not be for you and vise versa. On occasion he would announce he wanted a divorce!! This was of course very upsetting to me and he could NOT explain why... When I asked him what he didn't like about me... he'd reply NOTHING. " Am I a lousy housekeeper?" No, he said. When I begged him to tell me why he just stared at me. This would last a few days and then be forgotten until the next time.
As the years went by and intercourse became almost impossible not only because of the lack of rhythm but also because he could not maintain an erection, I began to shower with him and I would meet his needs in the shower. Perhaps because this was a new situation, we were able to be successful for a short period of time and let me tell you this was great for me. I felt confident he could complete the act this way, I felt good that I could bring my husband to orgasm this way and I didn't mind in the slightest that I was missing out as
I had already been missing out and having a struggle along with it to boot! We still had our moments in bed but not nearly as often and I still dreaded it.
As I was relieved that we had an alternative that was acceptable to us both, it still didn't satisfy my curiosity about WHAT THE HECK IS GOING ON HERE? Who could I talk to? A friend? Can you just imagine?? "Hey does your husband have trouble with rhythm in bed??" or "Does your husband pull some fancy moves that you have NO idea what's going on during intercourse?" Should I call Dr RUTH??? I had NO idea who to talk to or what to say and that was a very lonely time for me. I'm a BIG sharer of my problems and for the first time I felt I couldn't discuss a problem with even a close friend.
A few years ago, we found out that HD was in the family. By this time there were other symptoms that made having sex unpleasant for me and I was very thankful my husband usually accepted our arrangement. After spending a lot of time in MGH chat rooms and Hunt-Dis and getting to know spouses of Phd's, it finally dawned on me what our problem was all that time. It was the earliest symptoms of the movement part of the disease... Since I've had this revelation I have felt free to speak to some close HD friends and our Social Worker. Even my Social Worker said this was a new one on her, probably because no one wants to discuss this. Now, can I finally talk to my husband about this? No, I cannot in all good faith tell him that HD has taken even this from him. On occasion he will slip back into the "If you do this for me then I could do it" mode. And I gently but firmly tell him no I do not wish to do that. At times he has been very angry and threatened to hit me but so far we've avoided that part of the disease. Although this is not true, he has said that we have not had sex for seven years, the period of time in which he has experienced difficulties.
I DO want my fellow caregivers though, to understand they aren't alone if you have this problem. Do I have any answers? No, I do not, I wish I did. I do understand that some support groups have meetings on intimacy but I know my husband would not be able to handle such a meeting. He'd be too humiliated. But I wish I had known about HD during this time so I would have at least had an understanding as to what was happening, it may have made it easier to deal with. Hopefully, if this is happening to anyone else, you can find a happy middle ground as I did to help my husband. He didn't ask for this disease and I want to make his life as fulfilling as I can with our limitations.
From the perspective of a Phd husband.
The author wishes to remain anonomous and I should also note that the two authors do NOT know each other.
If you ask me, I'd probably say I didn't have enough sex. However, I
think our frequency is about the same now as it has been in the past.
If you ask my wife, she'd probably tell you that we do it too much. I
have made additional requests to my wife because I'm afraid of not being
able to be fulfilled the normal way one of these days.
I want to experiment but she says no. My feelings are that this is THE only
MANLY thing that I can still do. I know that sounds macho but I've lost
everything else- a responsible position at work, driving, friends,
social interaction, church callings, credibility, etc., all of the
things that helps "define" you in society as a man with worth.
Answers to this question can be found through these links:
- Sexual problems
- Published by the Huntington's Disease Association, London.
- Sexuality and Huntington's Disease
- Published by the University of Chicago Library, From the Fall 1999 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America
