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 regard to HD. This is particularly true if those decisions were permanent, for example, decisions about whether or not to have children, or career paths.
Feelings Specific to the Test Result
Positive 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 in an HD support group or continued support from the HDSA Center of Excellence 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 with the HDSA Center of Excellence team (including our 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, treatment with a psychologist, psychiatrist, or counselor 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 make plans for the future.
Positive result in a person with symptoms
For some people, it is a relief to actually 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 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.
Reduced penetrance result
This can be the most frustrating result since the at risk individual chose to be tested in order to have a clear answer.
Most people feel extreme joy and relief with a negative result but they 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. The problems that existed before the HD testing are most likely still there. Huntington disease is still very much 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.”
Check out HDSA’s “Here’s the Deal with Survivor Guilt” video:
Coping with Results
Most people eventually adjust well to their test results. It is important to draw on the support of professionals, family and friends. Visit our Social Support page for resources.
At the University of Washington HDSA Center of Excellence, we are committed to helping you and your loved ones at this important time of your lives, bringing hope, meaning, and purpose. Please do not hesitate to contact us if you have questions or would like to discuss these issues further.
Adapted from a handout by: Robin Bennett, MS, CGC, PhD Hon