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HD InsightsStress, Coping and HD

What I have learned so far

I came into the community of Huntington’s disease unexpectedly. In my role as a professor of psychology at Vanderbilt University, I was working with a pediatric neurologist, Dr. Lori Jordan, on research to help families with sickle cell disease. She had been approached by her colleague, Dr. Daniel Claassen, who asked if she knew of anyone who could help understand ways to support families who were faced with HD.

It is my lasting good fortune that Dr. Jordan put me in touch with Dr. Claassen. In my first meeting with him and his remarkable team, they shared with me stories of the challenges faced by the families under their care who struggled with the stress that HD brought into their lives. But they also shared stories of resilience in patients and their loved ones who coped with the effects of the disease, and their efforts to hold together as families. One meeting was all it took and I was drawn to HD like no other problem that I had encountered in my decades of research with families facing the stress of acute and chronic illness.

It is now five years later and I have still so much to learn. But along with my colleagues and students, I feel that I have learned a few things that I would like to share.

HD presents families with significant stressors and challenges.

All chronic illnesses can seem like a minefield of stressors and challenges for patients and their loved ones. I have learned this from years of working with families of moms and dads with cancer, families of children with cancer, families of children with sickle cell disease, and parents struggling with depression. And now I have learned that HD presents a similar stream of stressors in all facets of the lives of patients, their spouses and children, and members of their extended families.

Some of these stressors are personal — the worries about the future that visit late at night, the loss of skills and independence, and the financial stressors that come from being unable to work and the costs of medical care. Other stressors are interpersonal and include strains on family relationships, problems with communication, and the burdens that can come with caring for a parent or spouse with the disease. Some of the stressors of HD are uncontrollable — whether one carries the HD mutation, the rate of progression of symptoms, the reactions of other people to the symptoms of HD. Other stressors offer opportunities to control or change the source of stress — learning about HD and being involved in decisions about treatment, taking care of one’s overall health, and following treatment recommendations from medical providers.

There are ways to cope with HD.

All of the stressors of HD offer opportunities to cope with and rise above the stress. Long ago I learned that the golden rule for coping with stress is found in the Serenity Prayer by Reinhold Niebuhr: “Grant me the serenity to accept the things that I cannot change, the courage to change the things that I can, and the wisdom to know the difference.”  This simple prayer has been supported by decades of research.

Coping with uncontrollable stressors is best met with acceptance, mindfulness, and cognitive reframing — thinking about a problem in a more positive way and finding meaning even when things seem their darkest.

Controllable stressors can be met directly with problem solving — generating solutions to alter and take charge of even small parts of one’s life. Most importantly, skills to cope with uncontrollable and controllable stress can be learned and honed through practice. Having a wide range of coping skills in one’s toolbox offers the best chance to manage the myriad of stressors presented by HD.

No one who is touched by HD is an island, alone unto themselves.

Five hundred years ago the poet John Donne offered the wisdom that none of us are islands, entirely to ourselves. Rather, we are all involved in mankind, and what happens to others, happens to us. And this is at the core of the experience of those affected by HD. The effects of the disease on a patient affect their family members. The stress of a parent affects their children. And the worries of a child affect their parents. Further, maintaining relationships in our lives is essential to our mental and physical health.

The converse is also true — social isolation and loneliness take a toll by increasing feelings of depression and anxiety and harming our physical health as well. As a consequence, maintaining strong relationships within and outside our families is crucial to health and well-being.

There is much more to learn and do.

Drawing on our experiences during these last five years, my colleagues and I have learned that a high priority is to help build resilience in HD patients and their families. With the support of the CHDI Foundation, our team at Vanderbilt has developed a program to help patients and family members learn skills to cope with the stress of HD, build communication skills, strengthen relationships, and sustain feelings of hope and optimism.

The topics for the sessions include (1) Stress and Huntington’s Disease, (2) Coping Skills: Acceptance and Mindfulness, (3) Coping Skills: Cognitive Reframing, (4) Coping Skills: Problem-Solving, (5) Communication Skills, (6) Receiving and Providing Social Support, and (7) Hope and Resilience. Each session includes didactic material (e.g., defining each coping skill, giving examples of the use of each skill), opportunities for practicing the skills, and the chance for group members to engage with each other and the group leaders. In addition, group members are provided printed workbooks with exercises to learn and practice the skills between sessions. In an initial pilot study, participants in our group-based program rated the program very highly in terms of the benefits that they experienced. For example, participants reported that the program was an important new resource for them to deal with stress related to HD, and they learned new skills to communicate with and support others in their lives. Further, they reported higher levels of several indicators of well-being and mental health after completing the program. Their reports of negative emotions decreased, their sense of optimism increased, and they reported using cognitive reappraisal more as a skill to cope with stress.

About HD Insights

Our mission is to promote, disseminate, and facilitate research on Huntington’s disease. To fulfill this mission, we are guided by an outstanding editorial board that includes representatives from three continents, academia, industry, and the HD community.