Split Between Two Worlds: The Psychological Challenges for People at Risk of Huntington’s Disease

Imagine walking down your street on a bright, sunny morning when you stumble on the curb. It was only a small trip, nothing serious. You laugh it off and keep walking. But in the back of your mind, a thought lingers: what if this is the start of something? What if your balance is changing because of Huntington’s disease (HD)? You find yourself double-checking stairs, watching your footing on uneven paths, noticing every little wobble. For people who grow up with a parent who is affected by HD, life is often threaded with these types of uncertainty. The risk of HD is always there, seeping into everyday choices, shaping how people plan, how they think, and how they even see themselves.

A recent study led by Dr. Fiona Eccles and her team in Lancaster, UK, turned its attention to something rarely examined: the inner lives of people living at risk of HD. Instead of tracking test results, the researchers listened to how these individuals process their worlds, day after day, to protect their psychological well-being and stop HD from overshadowing who they are.

Stories, Not Statistics

In this research, Dr. Eccles and her team interviewed 12 people living at risk for HD who had not been tested for the HD gene. Each participant was interviewed in an online meeting for one hour. Questions focussed on the causes and management of feeling distressed, techniques individuals used to stay psychologically well, and how they came to terms with HD and being at risk.

Instead of focussing on numbers and statistics, this research analysed each interview by studying the person’s words, stories, and experiences to understand what individuals at risk of HD think and feel about different topics. This enabled the team to understand if there were any common themes that people living at risk of HD faced.

“You’re Constantly Living in Limbo”

One of the strongest themes to emerge was how participants managed the constant presence of HD in their minds. Rather than letting HD dominate every thought, they described moving between two worlds: one shaped by the reality of HD, and another where it receded into the background. 

This was not denial or avoidance, but a conscious and skilled psychological effort to keep HD in its place. Participants did not ignore their risk; instead, they made room for ordinary life, relationships, interests, and moments of peace, to exist alongside it.

The time spent in each world shifted depending on how they were feeling. When distress surfaced, entering the “HD world” could offer comfort, connection, and a sense of being understood by others who shared the same fears, without needing explanations. 

At other times, stepping into the non-HD world allowed them to rest, recover, and reconnect with who they were, beyond the label of risk. Moving between these two worlds was not a luxury, but a vital way of maintaining balance and psychological well-being.

“I have to live, just bloody live”

Another theme identified by this research is that people at risk of HD often feel rushed, as if their ‘HD-free time’ is borrowed. They explained how they feel the need to push themselves to live fully through achieving goals, staying active, and nurturing their minds, while always keeping in mind that HD could arrive at any moment. 

This drive gives individuals who are living at risk purpose, but also pressure, which leaves little room to pause or celebrate. Everyday moments, like watching others travel, enjoy retirement, or play with grandchildren, can hit hard, serving a stark reminder that some of these experiences may never be theirs.

“I try and try my hardest to look past the disease”

The final theme from the study was how living at risk of HD can be exhausting in ways most people don’t understand. Participants described the constant effort of keeping HD at the back of their minds so they could just be themselves. 

However, imagine a seemingly small, accidental occurrence such as swallowing a drink the wrong way. Most people would not think twice about this after the event, but for someone living at risk of HD it could thrust HD to the forefront of their minds. Are they choking because the HD symptoms have started? 

This study noted that the pressure wasn’t just about physical changes; it was also about individuals protecting their identity and shielding themselves and their families from stigma. Public shaming of relatives, unhelpful cultural narratives calling HD “the devil’s disease,” and dismissive interactions with health professionals all added to this mental burden, leaving participants feeling isolated and drained. On top of that, they carried the weight of their family history, while constantly aware that the struggles they witnessed could become their own future. 

Everyday Psychological Challenges

Perhaps the most striking theme from this research is how mundane, yet profound, the psychological work really is for people living at risk. It isn’t about dramatic acts of heroism or inspiration. It’s in:

• Deciding when to move between the HD and non-HD world to seek support or respite at different moments in their day-to-day lives.
• Managing the possibility of a shortened lifespan and making the most of time.
• Maintaining a sense of wellbeing while living at risk of HD and caring for symptomatic family members.

These acts are repeated daily, often quietly and invisibly, yet they appear to be central to staying well.

Lessons in Living Alongside Uncertainty

The study makes one thing clear: uncertainty never goes away. Participants learned to live alongside it, letting it exist in their lives without letting it define them. Psychological well-being, in this sense, seems to be not a static state but an ongoing, active process. This process often looks like ordinary life: going to work, enjoying hobbies, laughing with friends. But behind these everyday moments is a subtle and continuous effort to keep HD from taking over, to contain the shadow while still living fully.

The study also highlighted a pressing need for better understanding and support within professional settings, from family doctors to genetic counsellors, so that people living at risk of HD don’t feel unseen or unheard. 

With improved knowledge, practical guidance for genetic counsellors, and accessible support services, professionals could help make these invisible mental demands feel less exhausting for people at risk, offering reassurance and practical tools for coping. 

Future research has the potential to shape these services, ensuring that these individuals are supported not just medically, but psychologically, emotionally, and humanly.

Summary

• A study involving 12 people living at risk of HD explored how they protect their psychological wellbeing through a one-hour video call.
• Participants described living between two worlds, one shaped by HD and one where HD does not dominate.
• Many felt an urgent need to make the most of their ‘HD-free time’.
• There is a pressure of looking after their own wellbeing, while supporting family members with symptoms of HD.
• The findings underline a clear need for improved knowledge and services to help people living at risk of HD cope psychologically.