Sexuality and HD
It is by no means inevitable that people with HD and their partners will have any sexual problems at all. Many couples continue to have a mutually satisfying relationship for a long time and adapt to circumstances in a way suited to both partners. However, it is not uncommon for people to experience difficulties in the area of sexual relationships.
Sexuality is a subject that many people find difficult to discuss and involves dealing with the most intimate and private part of your relationship. Every individual situation is different, and we are not going to try to give easy answers but try to explore some of the problems we know people are facing and to see what or who could help.
Difficulty in obtaining an erection
There may be a medical cause for this, which should be thoroughly checked with your doctor. If the problem only began after you have been prescribed, or changed medication, this could be the cause and again it would be beneficial to consult your doctor.
Difficulties because of choreic movements
Some people have found it difficult to maintain intercourse because of the involuntary movements. It may be helpful to use a different position so that the affected partner is stable and well supported. Couples may have to experiment to find a position that works for them.
Psychological and Emotional Problems
One of the features of HD can be the lessening of normal inhibitions. This can also be true of sexual behaviour and some people with HD can become sexually over-active. In an acute form it may mean that persons affected may approach other people in an inappropriate way, but it is more common that they make extra demands on their partners. This may be quite inappropriate as to the time and place and can be very exhausting for the partner either in meeting them or facing the consequences of refusal.
The person with HD may well be feeling quite seriously depressed, frightened, isolated and unloved. One of the ways he or she can try to fight these feelings is by gaining reassurance through physical closeness and sex. The overpowering need may cause excessive demands, which the partner simply cannot meet. Refusal may be seen as rejection.
As the care needs of the person with HD increase, there may be diminished interest by the partner. Someone with choreic movements, changes in personality and behavioural problems, may become sexually unattractive in the eyes of the partner and sexual contact becomes an ordeal rather than a pleasure. Many partners feel very guilty about this, blaming themselves for what are quite natural reactions.
Extra attention and affection may reduce the need for actual intercourse however some people have found that this has the opposite effect and any physical contact is misinterpreted. As said before a person with HD may need a great deal of reassurance and may easily feel rejected. A caring and affectionate attitude should help, together with an acknowledgement of some of the feelings the person with HD may have.
There are no easy answers to any of these problems and if at all possible the couple should try to discuss any difficulties between themselves, or with the help of a counsellor to try to help them understand each other's feelings.
As things progress some partners have felt the only way they can manage is by very clearly ending all sexual relationship. This may mean separate beds or even separate rooms and may be a distressing decision to have to take because it is an acknowledgement that a particular part of their relationship has come to an end but many people have stated that once the decision had been made they were able to continue to give affection and practical care.
(Adapted with permission from the UK HAD Fact sheet series)