Talking about being at risk

It can be difficult to tell people about being at risk of Huntington’s disease. Most people haven’t heard of it and won’t understand what it means for the future. It’s helpful to have people you can have honest conversations with, so you can share your worries and talk openly about what you are dealing with.

You may be worried about forming relationships, especially with a potential partner. You may wonder about when you would raise the issue of Huntington’s, how you would tell someone about it, and how they would react. Or you might feel concerned about the future – that you might become a burden to the person you love.

Advice to consider when talking to others:

  • Try to build a good network around you. We all need friends and people to talk to, and having people in place who you have already talked to about this may well help you through any difficult times ahead.
  • When talking for the first time to someone who isn’t familiar with Huntington’s, think carefully in advance about what you would like to say. Consider if there is anything that you prefer to keep private at this time. You might find it helpful to explain that it’s caused by a faulty gene in your DNA and that once symptoms start, it causes difficulties with moving, learning, thinking and emotions. Our overview of Huntington’s may be helpful.
  • If you are telling someone about Huntington’s for the first time, they may find it hard to take in, so ‘bite sized’ bits of information given on more than one occasion may be helpful. They may not know what to say, or worry that they will say the wrong thing or upset you. It might be helpful to tackle this head-on, by saying that you understand this. You could direct them to this website.
  • When it comes to a potential partner, you could decide that it is better to talk about it openly in the early stages of a relationship to gauge how someone will cope with the information. This way it won’t be hanging over you and worrying you as you become closer to someone.
  • Friends who know that you have Huntington’s in the family and are at risk are likely to want to know what they can do to help. Different people are better at different things, so consider if you can suggest something to them. If they are good listeners, maybe you would like to be able to talk to them from time to time. You might know people who are keen to do something practical, like fundraising or research (healthy ‘control’ participants are often needed for studies). Have a think and don’t feel afraid of suggesting or accepting help - it will probably make the other person feel better too.
  • You are likely to need friends with and without Huntington’s. When you’re talking to others in a similar position it can be a relief to not have to explain – you are automatically with people who understand. However some people also find it good to have people in their lives who don’t know about it, with whom you can talk about other things. This may be colleagues at work or neighbours, for example - people who perhaps aren’t your best friends, but who give you space to just be yourself ‘away from Huntington’s’
  • If you decide to go through the genetic testing process, it can be a good idea to have a partner or good friend to attend the sessions with you to support you. It’s important, however, that other people aren’t pressuring you to be tested. You need someone with you who is going to support you to make the decision, not make it for you. See our information on genetic testing.

If you are finding it difficult to talk about Huntington’s, you might find it helpful to talk to people who are in a similar situation as you. There are many sources of support such as online communities, message boards, events and local HDA branches.

Friends and family are also always welcome to contact us for general information about Huntington’s disease. We’re here to help so if you don’t find what you are looking for, contact us.