Support during the testing process is not only important but can be very comforting. You are entitled and encouraged to bring along a family member or a friend to both your counseling sessions and your results appointment – and it is highly advised that you do so. Some people, when they decide to get tested, are hesitant to tell their family/friends, and decide to face the process alone. People’s reasons for not telling their family about such a huge life decision are usually because they do not want to put their loved ones through any extra stress, worry or pain – people want to protect their family. It is an understandable reason for keeping the process quiet; after all, many people testing have families that are already dealing with Huntington’s disease and people often feel like they are burdening their family by adding the testing process to the list of things to cope with. But it is unlikely to help you in the long run to keep this to yourself. As has been highlighted, testing is an incredibly emotional journey – you will need support during this process. Do not face it alone if there is no reason to – this is hopefully a time for the family to all get behind the person testing and support each other.
For people testing who have siblings either at-risk, already tested or symptomatic, testing can be an even tougher experience. Imagine testing negative if one of your siblings had already tested positive – how do you tell them your news? This is often called ‘sibling guilt’ and it can be uncomfortable and difficult to handle.
Support is the key, whatever the results as siblings you should use this as an opportunity to become closer and even more supportive. Talk about the worries you have with your siblings, express your concerns about how the family will react to your results before you get them – be prepared as a family.
However, you shouldn’t feel that you need your family’s permission or support to get tested – remember, it is your choice. There are other sources of support for you that you can reach through your national Huntington’s society of Canada or your genetic counselor.