Chapter 3: Recognizing your grief

Grief and genetic testing

I've been there
Jim speaks about how illness has affected his family. (3:22)Video transcript

Each of our kids wanted to know if they were carrying the gene. After two years of stress and tension, we found out that three were carrying it and one wasn’t. With that, our lives were changed.

I decided not to have children when I found out that I carried the gene and could pass it on. It was a hard decision to make. I always wanted to be a dad, and I live with the grief of this everyday.

I was my mother’s caregiver, so I‘ve seen this disease up close. It can be scary sometimes, wondering whether there is a genetic link, but for now, I don’t want to know if I have it. I just want to live my life as things come.

Depending on the illness, genetic testing could be an option for individuals and families who want to understand the risks and probabilities of hereditary illness. Deciding whether to have genetic testing can be a complex and personal decision. If you decide not to be tested, this can mean living with uncertainty. You may also face criticism or a lack of understanding from others. If you decide to go ahead with testing, this can be a tumultuous time, regardless of the results. Click on the switch button below.

If the results are positiveIf the results are negative

You may experience a range of emotions including numbness, sadness, or a sense of relief in knowing.

You may grieve the loss of your identity as a “healthy” person.

You may have lost hopes for the future –for example, having children or starting a career.


You may experience a range of emotions including a sense of relief, or a sense of guilt that you’ve been spared.

You may feel confused or uncertain about the future direction of your life.

You may experience a loss of identity as an “at risk” person and a loss of connection with others who are at risk or have the disease.


Regardless of your decision, genetic testing can bring individual and family grief to the surface. If you have questions about genetic testing or need additional support following the results of genetic testing, speak with your care team and ask about the resources available in your area. 


What may help

  • Because of the ways that a hereditary brain disease can affect family members, it’s important to look for support outside your family. Reach out to friends, extended family members, and local resources, such as home or respite care programs.
  • If you are a parent, remember that you and your children may need additional support from an experienced grief counsellor who can attend to each person’s needs.
  • Consider reaching out to organizations that support families with specific conditions and illnesses.
  • A genetic counsellor can provide specialized information and support.