The challenges of navigating dating while living with Huntington’s disease

Dating with Huntington’s disease (HD) has taught me how quickly people confuse honesty with a warning label.

I used to believe that telling the truth early on in the process was the kindest thing I could do. I still believe in honesty, but I’ve learned that it doesn’t protect me from being misunderstood. Sometimes it makes me a projection screen for other people’s fears.

There’s a moment in dating that feels universal: You’re getting to know someone, laughing more than you expected, and letting your guard down just enough to picture what “maybe” could look like. In that space, you are not a diagnosis. You’re a person being seen, wanted, and pursued. You’re normal in the way everyone wants to feel normal.

And then you remember that at some point, you’ll have to decide when to disclose your illness.

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For me, disclosure isn’t just a statement; it’s a threshold. It’s deciding when to step out of the version of myself that strangers can easily accept and into the version that carries a reality they don’t understand. I’m not only navigating chemistry and compatibility; I’m also navigating stigma, misinformation, and the way people think they know what my life looks like because they once watched a documentary, knew someone’s cousin who had the disease, or did a quick Google search at midnight.

Then there comes a point when the energy changes. Replies become slower, plans vague. The warmth drains from the conversation like someone opening a window in winter and letting the cold rush in.

A few people were honest with me in the bluntest way possible, telling me they didn’t want to deal with someone with such a serious condition. The hardest part for me isn’t the rejection, which is painful, but familiar; it’s the way rejection can make me question my right to want love at all.

When you live with HD, you already carry enough grief and perform the constant mental math of your energy, symptoms, appointments, and medication timing. Dating adds another layer, with the fear that you will always be too much and too complicated.

In dating, those moments don’t just feel awkward; they feel exposing. You can be dressed up, feeling good, and trying to enjoy an evening, then suddenly, you’re doing emotional labor. Suddenly, you’re educating and managing someone else’s discomfort so that you can both pretend the night is still romantic.

The truth is, I still want tenderness and laughter. I still want someone who reaches for my hand without flinching, and a partnership that doesn’t require me to shrink myself to be easier to love.

I must remember that I get to choose the timing of my truth. People act like disclosure is something I “owe” them immediately, but they aren’t automatically entitled to intimacy. Access to my personal medical story is not a first-date requirement. Trust is built, and safety is earned. I can be honest without being rushed.

It’s also important to pay attention to how someone responds to small vulnerabilities before I hand them the big one. Do they listen? Are they curious in a respectful way? Do they try to fix me, or do they make space for me? Do they treat my feelings as real or minimize them because they’re uncomfortable?

Sometimes people surprise me in the best way, responding with steady presence. Sometimes they don’t panic, make it about themselves, or collapse into awkward silence. They simply stay. They ask what support looks like. They ask what I want them to know. They let me be a full person.

Those moments matter because they remind me that rejection isn’t the only possible outcome, and that the right person doesn’t need a perfect body to choose me. Instead, perhaps they just need an honest connection.

I still have days when I feel tired of the whole process, of explaining, of watching someone decide who they think I am, and of feeling like my love life comes with extra steps. But I refuse to let Huntington’s disease steal my softness and let other people’s fear convince me I’m not worth choosing.

If you’re living with HD and trying to date, I want you to hear this clearly: Your diagnosis doesn’t disqualify you from love. You are not “too much.” You are not a risk that someone must calculate. You are a person with a heart that deserves to be met with care.

Disclose in your own time. Protect your heart without closing it. Let rejection be redirection, not a verdict. And when someone chooses you with clarity and steadiness, let it land. Let yourself receive it.

Because real love isn’t afraid of the truth.

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.