Getting emotional support

Because Huntington’s is a rare condition, living with it can feel quite isolating at times. It can also be difficult to cope with all the changes it brings about. You may also find you experience feelings of frustration or despondency, or you may feel guilty because of the impact your illness has on those around you - even if, rationally, you know it’s not your fault.

Many people with Huntington’s and their families get a tremendous boost from interacting with others affected by the disease. It can feel very reassuring, and help you cope with the tougher challenges.

There are various ways you can get support and connect with other people in a similar situation to you:

  • Meet-ups: the Huntington’s Disease Association runs regular events, both locally and nationally, for people with Huntington’s and their families. Take a look at our events calendar to see what’s coming up.
  • Forum: we host an online message board for people to connect with and chat to others.
  • Local groups: we also have local branches and support groups that enable people affected by Huntington’s to support each other.
  • Counselling: people in any challenging situation can find it useful to talk to someone about their feelings, and it doesn’t always seem appropriate to talk to friends and family. You can ask your GP to refer you for counselling. A counsellor is unlikely to know about Huntington’s, but can work through the specific issues that are relevant to you. You can also talk to your Specialist Huntington’s Disease Adviser (SHDA) or contact your closest specialist Huntington’s clinic to see if there is support they can offer.

See also our information on emotional support for carers.

Living with Huntington’s disease can be very difficult, for you if you have it and for your family. The right support can make a big difference and we’re here to help so contact us if you don’t find what you need.