My Dating Experience as a Huntington’s Gene Carrier

I was recently invited to talk about my column on Help 4 HD Live!, a weekly podcast for the Huntington’s disease community. The host, Lauren Holder, asked me how the revelation that I am a gene carrier has affected my relationships. I told her I was lucky that it hasn’t significantly changed them.

My friends were sad to learn my news, but remain incredibly supportive. I also have been fortunate with my romantic relationships. Right after I received the results confirming that I was a gene carrier, I started to see someone new. I mentioned in a previous column how caring he was when I told him about my status on a particularly rough day.

The decision to tell him wasn’t hard to make. I am bluntly honest in my personal life. I didn’t see a reason to hide my opinions or parts of myself until we got to know each other better. If someone doesn’t like a part of me, why waste my time? And that’s what Huntington’s is: a part of me — it is simply a fact, in the same way that my name is Alexus.

I discovered that my extreme honesty — as some might call it — was an unusual trait when on our third date, I showed my now-boyfriend the Netflix special with comedian Daniel Sloss where he talks about the futility of love. He told me that only I would have shared a show like that with someone they’d just starting dating. (I don’t regret it — it’s a great show). 

No one I’ve dated knew what Huntington’s was before I explained it to them. Until this year, the risk of my being gene-positive was merely a chance. I think most previous boyfriends thought the possibility was remote, so they didn’t seriously consider it.

Now, with my confirmation as a gene carrier, anyone I date no longer has that luxury. It is a foregone conclusion that one day I will experience symptoms. As I’ve mentioned, I think I have been lucky that my current boyfriend took the news so well.

When I started writing this column, I wanted to understand how he felt about that part of me. He usually proofreads my column before I submit it. I hadn’t asked him directly about it before but I found out that we share a similar view about my status: that it might shape particular decisions over time but doesn’t affect our now. And when later comes, he doesn’t have a problem with being there for me.

It would be unlike me to avoid dating, partly because I like attention too much to remain single. Eventually, someone would be my caretaker. If you think about it, in all long-term relationships one person will be a caregiver at some point. And just because you have one element of certainty about the future doesn’t mean that you can predict everything.

Life is fragile. Every time I leave my house, I am at risk of getting hit by a car — if you’ve experienced Massachusetts drivers, you will understand how true that statement is. I could need someone to take care of me in a year or 10 years from now. Maybe I will be their caretaker before they even get the chance to be mine. I can’t be certain about it until the time comes. Until then, I will continue to live my life — and that includes dating.

If you’re interested in hearing the podcast episode, you can find it here, on Player FM, or Spotify.

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