Talking to others

It can be difficult to talk to other people about caring for someone with Huntington’s disease. Most people haven’t heard of it and won’t know the symptoms or understand what it means for the future. It’s helpful to have people you can share your worries with and talk openly to about what you are dealing with.

Being a carer

Being a carer for someone with Huntington’s can be isolating and, as time goes on, the nature of your caring role and your relationship with the person you care for will change.

Many people find it helps to talk to others who have been in a similar situation and, as a carer, you might find it most helpful to talk to other carers. People become carers for many different reasons, but what led to this may not matter. While you are in a caring role, caring is a huge part of your life.

There are many ways of meeting other carers, online, over the phone and in person. For more information see Support for carers.

Talking about Huntington’s

Huntington’s is a complex disease and 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.
A range of specialist Huntington’s support is available, including Specialist Huntington’s Disease Advisers (SHDAs), a specialist service for younger people called the HDA Youth Engagement Service (HDYES), online message boards and much more. See Support for carers for more information.
General advice about talking to other people about Huntington’s, which might be helpful for you as well as the person you are caring for, is available here.

Talking about caring

  • Carers UK runs a listening service, an online forum and an advice line (tel 0808 808 7777).
  • The Carers Trust works to improve support, services and recognition for anyone living with the challenges of being an unpaid carer for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.

It is likely that you will need friends and support both within and outside of the Huntington’s and carers’ communities.

If you are finding it difficult to meet or make time to communicate with others and would like advice or support, contact us.