Relationships

As a young adult with HD in the family, you may be worried about forming relationships, especially with a potential partner. You may wonder about when you would raise the issue of HD, how you would tell someone about it, and how they would react.

You may be worried about the future – that you might become a burden to the person you love. Sometimes it seems really hard if a partner says they will love and care for you forever, no matter what – but you don’t want them to have to do this.

People often feel that it is better to talk about HD openly in the early stages of a relationship to gauge how someone will cope with the information, and so they don’t feel that it’s something that is hanging over them and worrying them as they become closer to someone.

You tend to know your friends quite well, and have an idea of who to tell and who not to tell. You may have different friends who you feel you can rely on for different things. From a friend’s point of view they probably want to support you and may need you to guide them as to how they can do this. They may be scared of saying the wrong thing or asking silly questions – they may want some information on the disease that they can look at so they get an idea of what HD is. Friends and family are always welcome to contact the HDA to gain information – clearly, the service is confidential and no individual would be discussed without their prior agreement, but general information and advice can be given. A friend may be glad of a way to help - this could be coming along to an appointment with the genetic counsellor with you, just being there to speak to, or getting involved in some fundraising.

If you sometimes feel low and this makes you step away from social activities you may want to discuss this with a friend. You may want to say that sometimes you could do with a push from them to get out and have some fun.

Many people have found it really useful to build up a social network of other young adults who have HD in their lives. When you’re talking to others in a similar position it can be a relief to not have to explain what HD is and why things can be difficult – you are automatically with people who understand. There is HDYO website which you can join where you will find many other young adults with HD in their families. Another great place for support is the HDA message board on the website where people share information and support.

Some people also find it good to have people in their lives who don’t know about HD. This may be colleagues at work - people who perhaps aren’t your best friends, but this allows people to have a space 'away from HD'.