Huntington’s disease (HD) can take a toll on relationships, however it doesn’t have to weaken the bond between you, your loved ones or even your friends. Although a positive gene test or diagnosis of HD will inevitably change the nature of some relationships, it is important to remember that you are still the same person despite HD. Some people may not know how to respond to this change while others may be more understanding. Despite this, there are ways together that you can deal with the strain HD places on relationships through the following:

Open Communication

Communication is vital in dealing with the ups and downs that are inevitable with HD. Talking openly and letting everyone have the chance to express how they are feeling are important aspects of staying connected to those important to you. Sometimes these conversations will be easy, and other times they will be hard. If you just hope the issue goes away and keep things bottled up, a couple of things can happen.

You will finally erupt like a volcano and risk damaging your relationships
You will start to feel isolated from those around you and lose trust and honesty, as well potentially intimacy with a partner.

Sometimes misunderstandings are due to a lack of knowledge. Consider telling those you are close to and whom you trust about HD. Close friends will want to support you, but you may need to educate them not only on HD, but what you need from them and what you don’t need. Being transparent will help eliminate any confusion.

Maintain your Interests

When you maintain your hobbies and interests from before HD, you help maintain your sense ofself. A diagnosis of HD does not mean that you can’t continue with many of these and this will go a long way in improving your overall well-being. Looking after yourself and ensuring some of your own needs are met, will help you to maintain healthy relationships with others, by minimising things like stress and burnout.

Open communication | huntington's victoria

Keep doing the things you enjoy...exercise, dancing, art etc

Dealing with Stressful Emotions

Huntington’s disease is unpredictable and therefore can bring about various emotional responses at any given point in time. To regain control over responses to challenges faced in a relationship, we would suggest the following:

Keep up to date about current and new Huntington’s disease treatments and how to access available resources.
Consider seeking support outside your close family and friends. A trained professional (i.e. counsellor) can provide advice on managing emotional responses and maintaining your relationships.
The more knowledge you have, the less stressful a situation can be. Educate yourself and your loved ones about the disease, what to expect and how to plan for the future.
It is also important to get enough sleep and time for relaxation. Mindfulness, meditation or yoga can be beneficial for reducing stress and emotional responses.