7 ways to support a friend with Huntington’s disease

It caught me off guard when a dear friend asked me recently, “How can I help you?”

It wasn’t because I hadn’t been asked this before in different contexts, but rather that I realized I’d never truly given the question enough thought.

Living with Huntington’s disease (HD) has a way of narrowing your focus to what you can manage day to day, and sometimes asking for help, or even knowing what kind of help you need, becomes a challenge in itself. Reflecting on this question, I began to consider how often people in my life want to help but might not know where to start.

For those who care about someone living with HD, whether you’re family, a friend, or a coworker, knowing how to be supportive can make a world of difference. So how can you truly support someone with HD? Here are seven thoughtful ways:

1. Listen with an open heart, not just ears

One of the most valuable things you can do for someone with HD is to simply listen. It’s not always about finding the right words; often silence and presence are more powerful than advice.

Take time to ask open-ended questions like “How are you feeling today?” or “What’s been on your mind?” and really focus on listening to their answer. When I’ve had someone actively listen to me, it’s made me feel seen and validated in my experience, even when the words themselves were hard to express.

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2. Learn about HD

One of the greatest gifts you can offer is taking the time to understand the condition. You don’t have to become an expert, but familiarizing yourself with the basics can help you better empathize with their experience and avoid misunderstandings. Plus, when you know more, you can help advocate for their needs in medical settings or social environments where there may be a lack of understanding.

3. Offer practical help, even when it’s not requested

Living with HD often means feeling a loss of independence as everyday tasks become more difficult. Small gestures, like picking up groceries, helping with errands, or offering to drive to medical appointments can be incredibly supportive. When you frame your offers as specific actions — “I’m free on Thursday, can I drive you to your appointment?”— it makes it easier for the person with HD to accept without feeling like they’re imposing.

4. Be patient with the process

HD is progressive, and symptoms can change day by day. There will be good days and bad days, and this unpredictability can be frustrating for everyone involved. They may move more slowly, take longer to respond, or struggle with decision making, but rushing them or showing impatience only adds to their stress.

If plans need to change or activities take longer than expected, reminding yourself and them that it’s OK to go at their pace can help alleviate some of the emotional toll of living with HD.

5. Respect their boundaries

While offering help is important, it’s equally essential to respect the boundaries of your loved one. There may be days when they don’t want to talk about their condition, or when they feel the need for space. Living with a chronic illness can feel like an invasion of the body and mind, so being in control of their social and emotional boundaries can offer them a sense of agency.

Check in regularly, but also be mindful of signals that they might need solitude or emotional distance. It’s not a reflection of your relationship, but rather a need for self-preservation on their part.

6. Be their advocate in public spaces

Navigating social situations or public spaces with HD can sometimes feel like an uphill battle. From unsolicited stares to awkward questions about behavior, public outings can be a source of anxiety and stress. If your friend is comfortable, you can step in as an advocate to help explain their condition to others, or gently redirect conversations when things become uncomfortable.

7. Be a consistent presence

The emotional ups and downs of living with HD can be isolating. One of the most meaningful ways you can help is by showing up consistently. This doesn’t mean being there every day, but making an effort to check in regularly, sending a kind message, or making plans can reaffirm that you’re in this for the long haul.

Final thoughts

When my friend asked “How can I help you?” it was a moment of clarity. I realized that people truly want to be there for us, but sometimes they need guidance on how best to do it. By lending a listening ear, learning about the disease, offering practical help, and being patient, you can become a true source of support for someone with HD.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.