My Dating Experience as a Huntington’s Gene Carrier

Alexus Jones avatar

by Alexus Jones |

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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.


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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.


Lauren Holder avatar

Lauren Holder

As always, I love your posts! :) I'm so glad you came on the show and talked with me!

Alexus Jones avatar

Alexus Jones

Hi Lauren! Thank you for reading! It was truly an honor to be on your show!


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