I Am Still Becoming: Living Beyond the Diagnosis

When you live with Huntington’s disease, it can feel like people are always waiting for you to become less of who you are.

Less independent. Less capable. Less hopeful. Less involved. Less yourself.

For a long time, I carried that fear too. I wondered what HD would take from me and how much of the woman I knew would remain as the disease progressed. But today, after years of living with this diagnosis, I have started asking myself a different question:

What am I still becoming?

That question has changed the way I look at my life.

I was diagnosed with Huntington’s disease in 2012, but HD is only one chapter of my story. Since my diagnosis, I have gone back to school, earned degrees, become an author, traveled, spoken publicly about my experiences, advocated for others, and recently earned my Master’s degree in Health and Wellness Coaching.

I have also lost more than 200 pounds and completely changed my relationship with my body, health, and wellness.

None of these accomplishments erase Huntington’s disease. I still have symptoms. I still experience difficult days. There are moments when my body reminds me very clearly that I am living with a progressive neurological condition.

But I have learned that progression and growth can exist at the same time.

HD may be progressing, but so am I.

I am progressing in the way I care for myself. I am progressing in the way I communicate my needs. I am progressing in how quickly I recognize when stress is becoming too much. I am progressing in my ability to rest without feeling guilty.

That last one has been especially important.

There was a time when I believed strength meant pushing through everything. If I was tired, I kept going. If I was overwhelmed, I tried to hide it. I wanted to prove—to myself and sometimes to other people—that I could still do everything.

Now I understand my body differently.

Some days, resilience looks like accomplishing everything on my schedule. Other days, resilience looks like canceling something, taking a nap, turning off my phone, meditating, or simply saying, “I have done enough for today.”

That is not giving up.

That is wisdom.

Living intentionally has become one of the most important tools I have for managing HD. I pay attention to my stress. I protect my peace. I make space for meditation, journaling, movement, gratitude, and rest. I stay connected with my medical team and take my medications as prescribed. I also give myself permission to enjoy my life without constantly waiting for something bad to happen.

That may sound simple, but for someone living with a progressive illness, it can be radical.

We receive so many messages about what Huntington’s disease may eventually take away that we can forget to ask what is still available to us right now.

What can I enjoy today?

Who can I love today?

What can I learn today?

What can I create today?

How can I advocate today?

Where can I find joy today?

I don’t want every chapter of my life to begin and end with Huntington’s disease.

I want to talk about my dreams. My education. My writing. My coaching. My advocacy. The digital products I am creating. The second book I am working on. The people I meet. The places I travel. The lessons I continue learning about myself.

I want room to evolve.

That is why the idea of becoming means so much to me.

I am not trying to become the woman I was before HD. I respect her, but I don’t need to go backward. I am interested in the woman I am becoming now—a woman who understands her limits better, speaks up for herself more confidently, practices self-compassion, and recognizes that her value has never depended on having a perfectly functioning body.

For anyone in the HD community who feels as though your diagnosis has placed a period at the end of your story, I want to remind you that there can still be commas.

There can still be new interests, relationships, accomplishments, adventures, boundaries, laughter, healing, and unexpected opportunities.

We may not get to control everything Huntington’s disease does.

But while we are here, we can continue participating in the creation of our lives.

I have Huntington’s disease.

And I am still becoming.