5 mental health coping strategies that help me in life with HD

Living with Huntington’s disease (HD) presents many physical hurdles, but the toll it takes on mental health is often overlooked. Many people, including myself, experience intense bouts of anxiety and depression as part of this journey. Coping with the physical symptoms of HD can be exhausting, and the mental strain can sometimes feel like an additional weight, especially when compounded by the stigma of having this disease.

For me, anxiety often rears its head in social settings because of how people react to my involuntary movements. Depression is another companion on my journey, often stemming from the grief of losing my pre-HD self. Early in my diagnosis, I’d often get depressed over the fear of the unknown. I worried about my future with HD and about being a burden to my loved ones.

Over the years I’ve found a few strategies that help me manage anxiety and depression and maintain a healthier mental state. The following are my top five tips:

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1. Practice self-compassion every day. The journey with HD is one of self-discovery and, sometimes, loss. Embracing self-compassion has been transformative for me. It’s easy to be hard on myself when symptoms flare up or I feel I can’t keep up with others. But I remind myself that HD is a part of me, not the whole of me.

Practicing self-compassion means allowing myself to feel all my emotions — sadness, frustration, grief — without judgment. It’s OK to have days when I feel low or fearful; being gentle with myself is key. I often repeat a self-compassion mantra, such as, “I’m doing the best I can, and I’m enough.”

2. Build a supportive circle. Surrounding myself with supportive, understanding people has been essential. This group includes family, friends, and professionals who understand HD. Finding a support group, either in person or online, can also provide an incredible sense of community. Through my blog and social media presence, I’ve connected with others who understand the experience of living with HD. This sense of belonging helps me feel less isolated and reminds me that I’m not alone in my struggles.

If you’re struggling to find people who understand HD, consider connecting with support organizations such as the Huntington’s Disease Society of America or the International Huntington Association.

3. Prioritize mindfulness and meditation practices. Meditation has been a double-edged sword for me. Initially, I struggled to quiet my mind — worry and self-doubt would surface with each attempt. But gradually, I found that short, guided practices helped me become more comfortable with meditation.

Now, I turn to mindfulness to ground myself, focusing on my breathing and acknowledging the present moment. Techniques like 4-7-8 breathing, where I inhale for four counts, hold for seven, and exhale for eight, help calm my nerves during anxious moments.

Over time, mindfulness has helped me observe my thoughts without becoming overwhelmed by them, creating a small buffer between my emotions and my reaction to them.

4. Set boundaries for self-care. Learning to say no and set boundaries has been one of my most powerful mental health tools. With HD, fatigue is real, and pushing myself too hard only increases my symptoms and stress. I used to worry about letting others down or not meeting their expectations, but now I prioritize what feels manageable and important to me.

Setting boundaries isn’t about isolation; it’s about protecting my energy for things that bring me joy or peace. Whether it’s limiting the time I spend on social media or opting out of an event that feels too draining, setting boundaries has become a crucial part of my mental wellness strategy.

5. Find a creative outlet. Expressing myself creatively has been a lifeline. Writing my memoir, “We Exist,” has allowed me to share my experiences and connect with others on a deeper level. Creativity, whether it’s writing, drawing, music, or even cooking, provides an escape from anxiety and depression. It allows me to process my emotions in a nonverbal way, bringing a sense of accomplishment and release. Creativity offers me moments where I feel in control, where I’m able to transform my thoughts and emotions into something tangible and positive.

If you’re managing anxiety or depression, consider finding a creative outlet that resonates with you. It can be a powerful way to cope.

Navigating mental health with HD is complex, and there are no quick fixes. With these tools, I hope you’ll find some solace and strategies to help navigate the challenges that come with this condition. Together, we’re stronger, and our resilience is a testament to our capacity for growth and healing.

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.