How journaling benefits me in life with Huntington’s disease

When I first heard the words “Huntington’s disease,” it felt like the ground beneath me gave way. There was no clear path forward, no instruction manual explaining how to navigate a life that had suddenly been redefined.

At the time, I didn’t have the language to express the tidal wave of emotions that crashed over me: fear, sadness, anger, confusion, and even moments of hope that flickered when I least expected them to. I knew I needed a place to put it all, somewhere private and safe. Without fully realizing it, that need led me to journaling.

In the early days, my journaling started almost by accident. I had always kept notebooks as an old habit from school or for fleeting attempts at creative writing, but I hadn’t used them seriously for years.

One night, after an especially difficult appointment where my symptoms were dismissed by a doctor who didn’t understand, I came home overwhelmed and exhausted. Words bubbled up inside me, desperate for a way out. I grabbed the closest notebook I could find and just started writing. It wasn’t neat or organized. It didn’t follow any clear storyline. It was messy, emotional, and honest — exactly what I needed it to be.

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At first, I didn’t set any rules or expectations for myself. Some days I filled entire pages with long, tangled sentences that captured my frustrations with my body, my fears about the future, and my anger at how misunderstood I felt by the world around me. Other days, a few broken phrases or half-finished thoughts were all I could manage. But even when the entries were brief or disjointed, they served a crucial purpose. They gave my emotions a home outside of my body, a place where they could live safely without suffocating me from the inside out.

Over time, writing became more than just a venting space; it was a conversation with myself. It allowed me to ask hard questions and explore feelings that I hadn’t wanted to say out loud. Some entries started with simple prompts: “Today I feel …” or “Right now, I am afraid of …” Other times, I would write letters to the parts of me that felt broken or betrayed. I would apologize to my body for resenting it. I would thank my mind for fighting to stay strong. These moments of writing offered me small pockets of peace, even on days when everything else felt chaotic.

One of the most profound things writing taught me was how to witness my own evolution. Living with Huntington’s is often described as a gradual loss of abilities, of independence, of plans we thought we could count on. But looking back through my journals, I saw something different. I saw how I had adapted. How I had survived disappointments I thought would destroy me. My journal pages became living proof that I was more than the disease. They reminded me that even when my body was struggling, my spirit was growing in strength and depth.

There were seasons when journaling felt easy, like breathing. And there were seasons when it felt hard to face the page, when I didn’t want to acknowledge the emotions swirling inside. During those times, I reminded myself that there was no “right” way to journal. Some days it meant scribbling a few angry sentences and shutting the notebook with a sigh. Other times, simply opening the journal and sitting with it in my lap was enough. The important thing was allowing myself to show up exactly as I was, without judgment.

As the years have passed, writing has remained one of the most powerful tools I have for coping with the complexities of life with Huntington’s disease. It’s a space where I can celebrate small victories — a day with fewer falls, a conversation where I felt truly understood — and mourn the losses that inevitably come. It’s a mirror that reflects my resilience back to me, even when I feel too tired or discouraged to see it on my own.

More than anything, journaling has taught me to listen to myself with compassion. If someone had told me years ago that a simple notebook would become one of my greatest emotional supports, I might have laughed. But today, I understand that journaling is not just about recording my life with Huntington’s. It’s about reclaiming my voice in a world that too often tries to silence or overlook those of us living with chronic illness. Each page I fill is a quiet act of resistance. A way of saying: I am still here. I am still feeling. I am still writing my own story, one word at a time.

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.