A letter to my past self, who was just diagnosed with Huntington’s

Dear past me,

I know you’re scared. I know your hands are trembling, not just from the involuntary movements beginning in your fingers, but from everything this diagnosis means. Huntington’s disease. You heard the words, but your brain hasn’t fully let them in yet. You’re still sitting in that sterile hospital room, feeling both numb and cracked open at the same time.

You’re wondering what’s next. Will I lose everything? Who will stay? Who will leave? Will I ever feel like myself again?

Let me tell you something from the future: You will still be you.

Recommended Reading

July 1, 2025 News by Marisa Wexler, MS

HDSA 2025: Early planning key for navigating care over time

Yes, this disease will change parts of your life. It will take things. It will stretch you, break your heart, and ask more of you than you ever thought possible. But it will not take all of you. It won’t erase your soul, your brilliance, or your ability to affect the world. You’re going to feel grief — big, aching grief. But you’ll also discover courage you didn’t know you had.

Right now, you think no one will understand. But that’s not true. You’ll find community — people who know this road and walk it with you. People who cry the same tears, laugh the same nervous laugh when their body does something unexpected, and hold space for your pain without rushing to fix it. You’ll make connections that matter more deeply than you ever imagined. You’re not alone.

There will be bad days, yes. Days when your balance is off, your anxiety is high, and your body doesn’t cooperate. But there will also be good days. Days full of laughter, creativity, and joy that feels earned. You’ll learn to celebrate the small victories, such as remembering your words during a conversation or going for a walk without fear of falling. You’ll redefine what accomplishment means, and you’ll learn to be proud of the things most people overlook.

You will cry. A lot. In your car, in the shower, on the phone with someone who doesn’t know what to say. And that’s OK. Let it out. The strength people talk about won’t come from pushing pain away; it’ll come from facing it and still choosing to show up. Strength isn’t about pretending you’re OK. It’s about telling the truth, even when your voice shakes.

You’ll become an advocate, even though you don’t know it yet. You’ll write, speak, and stand on stages. You’ll tell your story not because it’s easy, but because it’s necessary. You’ll put words to what so many people are feeling but don’t know how to express. You’ll become a voice for others who are still trying to find their own. You’ll be part of a movement to bring Huntington’s out of the shadows. And in doing so, you’ll help others feel seen.

You’ll also learn to care for yourself in new ways. Meditation. Stillness. Breath. You’ll build a new kind of self-care that’s rooted in gentleness, not hustle. You’ll stop needing to prove your worth through productivity and start honoring your body’s wisdom. There will be beauty in the slowness. There will be power in choosing rest.

You’ll lose people — friends who disappear, partners who don’t know how to show up, even professionals who see your diagnosis before they see your humanity. But the ones who stay will become your lifeline. Your circle may get smaller, but it’ll also get stronger. You’ll learn to hold tighter to the people who matter and to release those who can’t meet you where you are. You’ll rebuild your life on truth, not illusion.

You’ll face stigma. You’ll hear people say such things as “But you don’t look sick” or “I thought only white people got that.” You’ll be questioned, misunderstood, and doubted, even by those who should know better. But you’ll stand your ground. You’ll correct them with grace or fire, depending on the day. You’ll learn that advocacy sometimes looks like a speech and sometimes looks like walking away from a conversation that isn’t safe.

There will be real, breathtaking moments when you’ll forget about the disease entirely. When you’ll be caught up in the joy of creating something, or laughing with someone you love, or walking through falling leaves in autumn. And in those moments, you’ll feel something sacred: not in spite of Huntington’s, but in the life you’ve made alongside it.

So breathe. Take this one moment at a time. Don’t rush to figure it all out. There’s no prize for pretending you’re OK. Just be real. Grieve. Laugh. Stumble. Begin again. Let this life both soften and strengthen you.

You’re still worthy. You’re still loved. You’re still here.

And you’re going to do more than survive this.

You’re going to live.

With fierce love,

Your future self

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.