The Decision to Be Tested

If you decide to be tested it is important to plan who you will tell.

  • Will you tell them on the same day you are given your results?
  • Exactly how and when will you plan to tell them?
  • What if you change your mind and do not want them to know quite yet or at all? (One strategy is to tell them the results were uncertain.)
  • Planning what you will do the day you are given the results can be helpful. Will you go directly home and who will be there? Will you take some time off work or from family responsibilities?

You will most likely have strong emotional feelings when the results are given, regardless of the outcome. Many people feel relief at having an answer and disbelief that the answer is accurate. Often people express a feeling of “loss of identity”, particularly if the result is different from the one they expected. Frequently people go through a period of regretting past decisions which they might have made differently if they had known their status with regards to HD. This is particularly true if those decisions were permanent: for example, decisions about whether or not to have children, or about career paths.

Some other feelings specific to the test result may be as follows:

Increased risk test result in a person with no symptoms
Many people express a sense of isolation, feeling that there are few other people who can relate to their feelings. Participating with an HD support group or continued support from their HD testing centre can help them feel they are not alone. Some people have difficulty with not knowing when they will first develop symptoms of HD. They, their friends and relatives may wonder if the occasional clumsiness, jerk or emotional outburst is the beginning of HD. An appointment in the HD testing centre or with a neurologist may help to sort through some of these fears. Feelings such as depression, anger, loss of hope, despair and severe stress can occur. If these feelings occur, talking to a psychologist, psychiatrist or counsellor can be very helpful. The sense of “riding an emotional roller coaster” with good days and bad days is normal. Most people eventually come to terms with their results and use the information to help them make plans for the future.

Increased risk test result in a person with symptoms
For some people it is a relief to have an explanation for some of the problems they may have been experiencing. Sometimes this information can reduce stress in the work environment. The person with HD may be eligible for job reclassification or benefits. Stress in the family may also be reduced. As with the diagnosis of any chronic illness, the diagnosis of HD can also bring feelings of shock, grief, anger, disbelief, depression and loss of control. Professional support and support from friends and family can help someone with HD continue to lead a productive and satisfying life.

Normal result
Most people feel extreme joy and relief with a negative result but a small proportion may experience a low period following the testing. They may be disappointed that the “good news” did not bring as many positive changes in their life as anticipated. It must be remembered that the problems that existed before the HD testing are most likely still there.

Huntington disease will continue to be a part of their life. Often there may be a feeling of increased responsibility for caring for affected family members. Often people who have lived their lives feeling they would not live a long life because they would someday develop HD have a hard time dealing with the concept of “having a future”. They may feel a new pressure to “make something of themselves”. They may also feel guilty that they will not develop HD when other close family members will, particularly if they are the only family member who has “escaped”.

Coping with test results
Most people eventually adjust well to their test results with time. This can take several weeks or months, therefore it is important to draw on the support of professionals, family and friends.