Coping with Results
Receiving a predictive test result, whether it is positive (HD-causing gene change if found) or negative (normal), can be a very emotional experience. 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. Susan Tolley, the Director of the British Columbia HD Resource Centre discusses how to cope with HD predictive testing results.
Some other feelings specific to the test result may be as follows :
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.
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.
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”.
For more information on coping with a positive result please see tips for the gene positive.
Dr. Michael Hayden, a Professor at the University of British Columbia, has dedicated his career to understanding the development of HD and finding a way to cure it.
Testing for HD
The decision about whether or not to have testing for HD is a very complex and personal one. For some, the test provides information about their future. Others choose not to undergo testing. There are no right or wrong choices. We will help you to make an informed choice regarding testing, and support you through the whole process.
There are many other online websites and resources which provide information regarding HD in general, support groups in your area, research updates and opportunities to be involved in clinical trials.