When a Short Fuse Becomes a Storm: Understanding Irritability in Huntington’s Disease

We all have days when we feel irritable, like when you’re stuck in traffic, or someone cuts in line at the grocery store. But for people living with Huntington’s disease (HD), irritability isn’t just a passing mood. It can feel like a thunderstorm that arrives suddenly, often without warning, and affects not only the person with HD but also everyone around them.

In a recent study, Dr Sarah Gunn and her team of researchers from Leicester, UK, set out to explore what irritability really feels like for people with HD and their families. By hearing directly from people with HD, the researchers painted a clearer, more honest picture of irritability for folks impacted by this disease. This study showed that irritability is much more than just a mood. It is a real and challenging problem that impacts emotional regulation, relationships, and general wellbeing.

It’s Like a Volcano 

One common, but lesser-understood symptom of HD is irritability. Irritability can be deeply distressing for the person with HD, who is experiencing these intense emotions. However, it can also cause significant emotional strain for family and friends, leaving everyone involved feeling frustrated, isolated, and misunderstood.

Imagine holding a bottle of fizzy drink (soda) that’s been shaken. You try to keep it closed, but eventually, the pressure builds, and it explodes. This image helps us understand how irritability feels for people with HD: sudden, intense, and difficult to control. It’s like a volcano bubbling beneath the surface, calm one moment, then suddenly erupting over something that might seem small or insignificant to others. It’s not that people with HD want to lash out; they may feel helpless because they notice their irritation rising but cannot control their reactions.

Inside the Storm

Instead of relying on medical tests or numbers, Dr Gunn and her team wanted to understand irritability from the perspective of those who live with HD. They investigated irritability in people with pre-manifest and manifest HD. ‘Pre-manifest’ HD refers to people who have tested positive for the gene that causes HD (CAG number is 40 or more), but they do not yet display any recognisable symptoms (equivalent to HD Integrated Staging System (HD-ISS) Stage 0). Whereas ‘manifest’ HD refers to people who have tested positive for the HD gene and the person is showing recognisable symptoms of HD (HD-ISS Stage 1 and beyond). In this study, 42% of individuals had pre-manifest HD, while 58% had manifest HD.

The researchers conducted interviews, giving people with HD a chance to share their experiences, in their own words. The conversations covered how people with HD felt about the word “irritability,” how they experienced it, what triggered it, how they managed it, and how it affected their relationships.

Once the interviews were complete, the researchers carefully reviewed the interviews, focussing on irritability and how it affected people with HD. They identified three main themes (categories) that came up repeatedly:

1. The Triggers
2. The Challenges
3. Soothing the Struggle 

The Triggers 

Dr Gunn and her team of researchers noted common ideas across different participants with HD, for the category, ‘The Triggers’. One key idea was, ‘It’s not me, it’s the HD’. Participants had complicated feelings about the word “irritability.” Some participants felt uncomfortable identifying with irritability, as it can carry negative connotations, while others felt it accurately described their experience with HD.

Many participants explained how the stress of living with HD made them feel more irritable. Worries about their future and concerns for their family members added to the strain, making it harder to stay calm, and increasing the chance of snapping at others.

Feeling out of control or overwhelmed could contribute to heightened feelings of irritability in people with HD. Participants commented that life events such as grief, past trauma, or busy, chaotic environments, made it harder to manage emotions. Interestingly, all participants talked about how basic physical needs, like being hungry, tired, in pain, or too hot or cold, could quickly push their irritability over the edge. It’s a bit like how anyone might feel more impatient or upset when they are hungry, or in pain.

The Challenges

Participants remarked how even tiny annoyances, like a door slamming while you are trying to talk, could quickly explode into intense anger. These feelings might linger, making it hard to stay calm or think clearly. This could lead to snapping or saying hurtful things. Some felt powerless over these feelings, which left them scared and worried about their own outbursts and how it affected those around them.

Irritability in HD can cause misunderstandings, especially with loved ones who may feel hurt or distant, this study found. Some people with HD tried to hide difficult feelings at work, or around new friends, but this often made them to more frustrated at home. Many people with HD reported cancelling plans with friends and spending more time alone, to protect themselves and others. 

Soothing the Struggle

During the interviews, participants shared different methods they used to keep irritability from boiling over. Taking breaks, distracting themselves, or leaning on supportive friends and professionals were common strategies. Alternatively, some suggested that medication and small lifestyle changes, like avoiding stressors, helped them to stay calm and protect their peace.

A Call for Compassion

Studies like this document in the scientific literature what many people from HD families already know. This type of research is critical so that patient organisations, clinicians and other HD stakeholders can lobby for resources, support services, and treatment strategies that address the full spectrum of HD symptoms. HD is more than just movement issues; it involves emotional, cognitive, and behavioral challenges that can deeply affect quality of life. Recognizing and validating these symptoms through research ensures they are not overlooked in care plans or drug development efforts.

If you are living with HD or caring for someone who is, know that you are not alone. Irritability is not a sign of weakness or bad character. It’s a real and painful part of HD. With understanding, patience, and the right strategies, it can be managed.

Just like you would make room for someone using a wheelchair, or help someone with a broken leg, people with HD need compassion for the challenges you can’t always see, like irritability. Let’s look past the surface and recognise the storm for what it is. Irritability is a symptom, not the whole person.

TL;DR

• Irritability in HD is more than just a bad mood; it’s a real, distressing symptom that can feel like a sudden storm, affecting both the person with HD and those around them.
• A UK-based study led by Dr. Sarah Gunn explored how people with HD experience and manage irritability. Through interviews, researchers identified key triggers (like stress, fatigue, or chaotic environments), emotional and social challenges, and coping strategies (like taking breaks or seeking support).
• The study emphasizes that irritability is a valid, often invisible part of HD that deserves understanding, compassion, and targeted support in care and treatment.

Learn more

Original research article, “‘It’s more than just irritability’: perspectives and experiences of irritability among people affected by Huntington’s disease” (open access).