Talking to people about Huntington’s

It can be difficult to talk to people about Huntington’s disease. It’s a rare illness so most people haven’t heard of it and won’t know the symptoms or understand what it means for the future. You may be the first person who has ever talked to them about it.

It’s helpful to have people you can have honest conversations with, to share your worries and talk openly about what you are dealing with. It’s also helpful to have friends both within, and outside of, the experience of living with Huntington’s.

Approaches you might take when talking about Huntington’s:

  • You might want to think in advance what sort of things you would like to say, and then answer any questions people have. Consider if there is anything that you prefer to keep private at this time.
  • It can be really difficult to describe Huntington’s as everyone’s symptoms are different. But you might like to say that there are some physical, emotional and behavioural symptoms, and then talk a little more about the ones that affect you. If you feel that your behaviour has changed, this can be especially important to talk about.
  • Friends who know about your Huntington’s status are likely to want to know what they can do to help. Don’t feel afraid of accepting help - it will probably make the other person feel better too. Different people might be better at different things, but it can be really helpful for them if you suggest something you’d like them to do for you. For example, you might have a friend who you would like to be able to chat with from time to time; someone who’s good at listening. Or you might have people who are keen to do something more practical, like fundraising. If you feel that you get down on occasions, you might want to just remind people that although things are sometimes difficult, they shouldn’t forget to invite you to social events.
  • Tell people about anything that makes it easier for you and those around you. There may be many simple adjustments that could make life better. For example, it might be easier for you to do one thing at a time. So, if you’re in a coffee shop or restaurant, you might want to eat then talk, rather than trying to do both at once. If you find it hard to make decisions, you could ask a friend to help you with that, for example ask them to select something from the menu and see if you’d like it, rather than you trying to process all the options yourself. If you’re walking together, it might be easier not to talk while you walk.
  • You may want to direct people to this website to learn more about symptoms. This can help them adapt their behaviour to help you.
  • 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.
  • 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 what it is and why things can be difficult – 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 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.