By Jessica Klein
As a psychology intern, meeting Huntington disease (HD) patients and caregivers and witnessing their interactions with clinicians and social workers has been enriching in many ways. Some of the most eye-opening experiences I’ve had include witnessing patients’ sometimes-unpredictable behavior, perceiving their frustration with the inability to communicate, and acknowledging their sources of anger. I have also enjoyed being part of a team that seeks to bring contentment through therapeutic interventions, including non-pharmacologic (organizational and logistical adjustments at home) and pharmacologic interventions.
I had never before attended a HD support group—a group in which participants can share whatever they feel the need to share. My observation until this point was that the subject matter of HD is often held within the family boundaries. Whether it is because of fear, embarrassment, modesty, isolation, or its multi-faceted effects, being able to break through these barriers and confide in individuals whose experiences are similar brings candor, openness, and relief, especially when the group is led by a trustworthy and experienced person who knows when and how to intervene, ask the right questions, rephrase, and redirect when appropriate.
One cold and rainy Saturday, I ventured out to attend one of these groups. One might have anticipated that the attendance would be rather limited: not so! Some people drove for hours to be there, while others lived only thirty minutes away; some were completely new to the disease while others had lived with it for decades; some were affected mostly by the physical aspects of HD while others suffered most from its mental and psychological effects; some were represented by three generations while others showed up unaccompanied. Whatever their place and their state in the HD journey, it was obvious that none of the fifteen people present would have imagined being anywhere else at this precise moment.
In this open group that meets every third Saturday of the month, anyone is free to come, so the attendees don’t know in advance who will be there, whether they will be young or old, at the onset of the disease or well into it already. So why does it ‘work’? Why does it feel so natural for everyone—even the seemingly most introverted participants—to speak up, talk about their concerns, and reveal pieces of their lives, including ones so intimate that they may have never disclosed them to anyone before?
The first reason is that they don’t need to explain HD because everyone around the table is already aware of it. Second, they all come with the same two-folded goal in mind: to support others and to get support for themselves. This dual objective creates in each and every person a common readiness to be just as he or she is, in his or her raw vulnerability, as truthful as it gets.
The issues raised vary widely: A lady who had just learned that her son-in-law has HD wondered what changes would be coming as her son-in-law and his daughter would most likely move into her house when his condition deteriorated. A man who had recently discovered that his father-in-law had HD wanted to be as knowledgeable as possible about the disease in order for he and his wife to take the best possible care of him. In the meantime, his wife needed to accept what it meant to have a father with HD who exhibited sudden outbursts of irritability when he had previously been then the gentlest man on Earth. As for their 14-year-old daughter, who wrote an essay about her grandfather’s disease at school and received an award, she was just starting to figure out how to live with the idea of her grandfather being such a different version of his former self. Many other stories were shared, including by those more familiar with the disease and whose experiences helped the newest members of the group understand how one can learn to live with HD over the years and what ‘strategies’ prove effective in the long run.
After two hours of uninterrupted dialogue, I was under the impression that everyone in the room had been given the freedom to say—or keep quiet about—whatever was on their mind, and had been given the privilege to listen and to be listened to in an empathetic, nurturing, non-judgmental way. At the end of it, there was no doubt about the fact that this support group had more than fulfilled its mission—to make all of its participants feel connected and inspired, supported and hopeful, comforted and nurtured. Above all, the group empowered participants to muster the energy to carry on, despite the difficulties and the obstacles lying ahead on their challenging journeys.
Jessica Klein is a graduate student in the Department of Psychology at Paris Diderot University.