Positive or negative, the day you receive your result may feel like the most surreal day of your life and it is important that you take the time to accept your result. The process of acceptance can only be done gradually over time. Both results will bring with them different emotions and different hurdles in the future. Testing positive raises some more obvious issues, but testing negative also has its complications for people. Both are discussed in the sections below.
Testing positive for Huntington’s disease is often a traumatic experience – one that can really knock you off your feet. Do not be surprised if it takes you many months to feel like yourself again, these things do take time and it is important not to expect too much from yourself after your result. As was highlighted in the main testing section, accepting your results can only be done gradually over time. It is important to remember that you are able to have follow-up appointments with your genetic counselor anytime you want to discuss your result and how you feel. This can be very useful and the counselor will be happy to go through any issues that are on your mind.
You also need to think about who you are going to inform about your results. Telling friends or work colleagues is really only something you can decide upon. The lack of understanding about the disease can cause issues, will they understand? Will it affect how people view you at work? Etc.
However, once you have had time to get used to the result, you can use the fact you have tested positive as the reason/motivation to do the things in life that you have always wanted to do. Why not go traveling, or change your career, begin a new fitness regime or have a fresh new start in life! Testing positive can be great motivation to get out there and experience life. Again, it may take time to find that motivation, but once you have it you can really make the most of things.
Another important issue to remember is that testing positive may change the way you see things in life. For instance, if you have a family member who is symptomatic with Huntington’s disease, you may find that, because you have tested positive, it is hard for you to witness that person’s progression. Time really does help, and you may not feel like you have a lot of it right now, but be assured you still have plenty of time to enjoy life. Research into Huntington’s disease is progressing really quickly and there is very much real hope for the future. You may want to help by participating in research yourself, it can be a very rewarding experience and many feel they are being productive by participating in research studies.
There are many good days yet to experience, and yes, you will have your bad days too (who doesn’t). But stay positive and keep moving forwards and you shall continue to achieve in life. Remember that you have always had the expanded gene; the only difference is that you know this now. You have the advantage of future knowledge about your life, use it. Testing positive might just be the motivation you needed to achieve great things and to lead a life to be proud of.
Testing negative is generally seen as the ‘good result’, but people can be too quick to congratulate you on testing negative. They may expect you to be happy, delighted, or ecstatic. When in fact, testing negative does not mean somebody is completely free of Huntington’s disease from their lives. The chances are you still have family members who are either symptomatic, at-risk or gene positive – so the worry still remains.
One of the biggest issues for those that test negative is the guilt. So many people feel huge amounts of guilt for receiving a negative result – you may be feeling that way too. It is important that you discuss these feelings with your family and friends, be open and honest – you have every right to highlight your feelings.
Some people feel like a part of them has been taken away when they test negative – as if Huntington’s disease was a part of their identity, and now it has gone they are unsure what they want to do in life. Feeling this way may cause issues. For instance, one of the main things, for so many years, a person has in common with their family is Huntington’s disease, so if someone tests negative and now knows they won’t have the condition, they may feel a form of separation from their family – like they have lost that connection.
It is very important that you discuss any issues you are worried about. You are entitled to have follow-up appointments with your genetic counselor to talk about your result and any issues you have. But as was highlighted before, discuss your feelings with your family as well – they may not realize how you are feeling inside. You can only support each other if you understand the reason why support is needed – that means you need to be open and honest about your feelings with regards to testing negative, do not keep them hidden away purely because you got a ‘good result’ and feel you should not be complaining.
Finally, even though you may have tested negative, you can still help with the search for the cure. There are research studies that want and need people who have tested negative. You can participate in these and do your bit to help not only your family, but others suffering with Huntington’s disease too.