Coping

It can be incredibly hard to cope with the fear of living at risk, or with having a positive test for HD. People may fear becoming a burden, becoming like their parent, passing on the gene, losing cognitive abilities.

People worry that a trip or fall, a moment of forgetfulness, or arguments may be the early symptoms of HD. Whether or not the stressor is a result of HD it must be addressed, not avoided.

People who have had a negative test can also struggle to cope. Sometimes people have lived their lives thinking they would get HD, when they have a negative test they feel they should be happy, but also feel that they have lost a huge part of their identity. Others feel guilty after a negative test, especially if siblings have tested positive or remain at risk. People who have had a negative test can find that maintaining a role in the HD community can be a good coping mechanism (e.g. support groups, fundraising, research etc).

People – in any situation - can find it useful to talk to someone about these feelings, and it doesn’t always seem appropriate to talk to friends. You can talk to your Regional Care Adviser from the HDA, you can ask your GP to refer you for counselling or you can also contact your closest specialist clinic to see if there is support they can offer.

Again, one of the key ways people find they can cope is by talking to others in a similar situation; this may be at a local support group (contact Head Office for more information), the HDYO website, the on-line message board or coming along to the youth conference.