Defining joy in life with Huntington’s disease
Self-compassion has made more room for joy in my life
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When people talk about joy, they often make it sound polished. It might be presented as big smiles, perfect vacations, exciting announcements, or lives that seem untouched by hardship. It’s often packaged as something bright, effortless, and easy to recognize.
But that’s not the kind of joy I know.
My joy exists alongside Huntington’s disease (HD). It lives in a body that moves involuntarily, becomes fatigued, loses balance, and sometimes requires more rest than I would like. It exists alongside medical appointments, medication schedules, uncertainty, grief, and the knowledge that HD is progressive.
My joy is not glossy. It is real.
For me, joy doesn’t mean pretending that everything is fine. It doesn’t mean denying my symptoms, ignoring my fears, or forcing myself to remain positive when I’m struggling. I’ve learned that joy and sadness can exist in the same day, and sometimes in the same moment.
I can be grateful for my life and still feel frustrated with my body. I can celebrate how far I’ve come and still grieve what HD has changed. None of that makes my joy less genuine.
Living with HD has taught me to stop waiting for perfect circumstances. If I waited for a symptom-free day, a stress-free season, or a life without uncertainty, I might miss the life happening in front of me.
Today, I live with intention. That means I pay attention to what brings me peace, meaning, and connection. I don’t take ordinary moments for granted because I understand how valuable they are.
Joy can be waking up after a good night’s sleep. It can be drinking something warm in a quiet room before the day becomes busy. It can be completing a task that requires more concentration than anyone else realizes. It can be walking safely, having enough energy to leave the house, or making it through an appointment feeling heard and respected.
Sometimes joy is simply having a calm day in my own body. My body has carried me through every painful season and every meaningful milestone. It may move differently, but it still allows me to experience life.
Joy also comes through purpose. Writing, coaching, speaking, and advocating give meaning to many of the experiences I once wished I could erase. I cannot change the fact that I have HD, but I can decide what I do with my story.
Connection is another important source of joy. Living with HD can feel isolating, especially when others don’t understand what it takes to move through a typical day. Being around people who allow me to be fully myself creates safety.
I treasure the people who don’t make me explain every movement. I appreciate those who ask what I need instead of making assumptions. I value conversations where I can laugh, be honest, and admit when I am having a hard day. Real joy doesn’t require me to hide.
Self-compassion has also made more room for joy in my life. I used to believe that I had to push through everything. Resting made me feel unproductive. Changing plans felt like failure. Needing help sometimes made me feel weak.
Now, I understand that caring for myself isn’t something that takes me away from joy. It helps create it.
I monitor my stress because I know it can worsen my movements, fatigue, balance, and thinking. I rest when I need to. I set boundaries. I take my medication and stay connected with my medical team. I protect my energy and give myself permission to say no. These choices may not look joyful from the outside, but they allow me to feel more present in my life.
Joy also comes from no longer fighting myself every day. There are moments when HD still frightens me. There are days when my symptoms feel heavier, my body feels unpredictable, and my emotions are difficult to carry. On those days, joy may be very small. It may be a phone call, a favorite song, a good meal, a prayer, a few deep breaths, or the decision to begin again tomorrow.
I’ve learned not to dismiss small joy, which has sustained me through some of the hardest periods of my life. It reminds me that my life isn’t defined only by what HD has taken. My life is also defined by what remains: love, purpose, growth, humor, faith, connection, and hope.
This is not a glossy version of joy. It’s not perfect, constant, or untouched by pain. It’s joy with scars. It’s joy with medication bottles, medical appointments, fatigue, and uncertainty. It’s joy that has been tested. And because it is real, I’ve learned to trust it.
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.
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