5 Self-Care Tips That Help Me Thrive with Huntington’s Disease

May is Huntington’s Disease Awareness Month a time to uplift the voices of those impacted, challenge stigma, and spotlight the strength that lives within our community. For me, this month is not just about educating others; it’s about honoring myself, my journey, and the tools that help me continue forward with purpose and peace. Living with Huntington’s Disease (HD) is no small feat, and over time, I’ve learned that self-care is not optional it’s essential.

When symptoms feel unpredictable and energy runs low, it’s easy to put ourselves last. But what I’ve discovered is that prioritizing my well-being is an act of resistance, healing, and advocacy. It helps me show up as my fullest self in conversations, in relationships, and in the HD community.

Here are five ways I practice self-care as someone living with HD:

1. I Build My Days Around What Fills Me Up—Not What Drains Me

There was a time when I said “yes” to everything even if it meant burning out. I felt pressure to “prove” myself or keep up with others. But HD taught me to slow down and check in with what I truly need.

Now, I create a flexible daily rhythm that supports my energy levels and helps me stay present. I schedule in rest without guilt. I alternate between tasks that require focus and activities that bring me calm or joy, like journaling, drinking herbal tea, or watching the sunrise.

If I only have the energy for one thing a day, that one thing is enough. Self-care means honoring your body’s truth and giving yourself permission to live at your own pace.

2. I Nourish My Body with Intention and Simplicity

Eating well with HD can be a challenge between changes in appetite, swallowing difficulties, or fatigue from cooking. I used to beat myself up for not making Pinterest-worthy meals, but I’ve since shifted my mindset.

Now, I focus on simple, nourishing meals that support my brain and body. I keep chopped veggies and proteins ready to go. I blend smoothies packed with healthy fats, leafy greens, and antioxidants. I also try to stay hydrated, especially when my meds leave me feeling dry or tired.

Nutrition is part of my self-care toolkit, not a source of stress. I celebrate the effort, not the perfection.

3. I Advocate for My Mental Health—Unapologetically

HD doesn’t just affect the body it affects the mind, emotions, and sense of self. I’ve battled anxiety, grief, and even shame after being misjudged or questioned about my diagnosis. That’s why mental health care is a non-negotiable in my life.

I see a therapist who understands neurodegenerative conditions and helps me navigate identity shifts. I practice mindfulness even if just for a few minutes—to stay grounded in the present. I talk back to my inner critic with self-compassion and affirmations like, “I am more than my diagnosis.”

If you’re reading this and struggling silently, please know you don’t have to. Seeking support is a sign of strength not weakness.

4. I Set Boundaries That Protect My Peace

Boundaries are a big part of my self-care. I used to feel guilty for canceling plans, explaining my needs, or saying “no.” But HD taught me that protecting my peace is not selfish—it’s how I survive and thrive.

Now, I let others know when I need extra support, quiet time, or understanding. I don’t explain my disability to everyone—I share when I feel safe. I choose friendships and environments that uplift me, not deplete me.

Boundaries are a form of advocacy and love. You teach people how to treat you by how you treat yourself.

5. I Celebrate Myself—Exactly As I Am

This might be the most powerful form of self-care: I celebrate my resilience. I celebrate every small win getting out of bed, completing a task, advocating for myself, laughing on a hard day.

I take photos. I wear bright lipstick when I want to feel bold. I look in the mirror and see not just a woman with a disease, but a woman who is showing up, telling her story, and living out loud. That is worth celebrating.

Every time I share my truth, whether in a blog, speech, or conversation, I remind others (and myself) that we exist—and we matter.

Final Thoughts: Making Self-Care a Priority, Every Month

While May is HD Awareness Month, my journey of self-care continues long after the calendar page turns. Self-care is not a luxury—it’s a lifeline. It helps me manage symptoms, stay emotionally balanced, and connect with the parts of me untouched by HD.

To anyone reading this who is navigating life with Huntington’s Disease, I want to say this:

You are worthy of rest. You are worthy of joy. You are worthy of care. Whether you start with one deep breath, one kind word to yourself, or one nourishing meal your healing matters.

Let’s keep showing up for ourselves, not just in May, but every day.