Huntington’s Is Not My Secret
A few months ago, my boyfriend’s Philosophy of Technology class planned a debate about the ethics of gene editing. I told him that I was a perfect case study to bring up since gene editing opens avenues for a potential Huntington’s disease cure. He was slightly taken back by the idea, saying that my diagnosis wasn’t his information to share.
At first, I didn’t understand his reaction. It wouldn’t be weird for me to tell people he’s from Puerto Rico so why would it be weird for him to share that I have Huntington’s? To me, it’s no secret. I eventually realized that, to many people, health matters are considered very private and can sometimes be stigmatized.
While it’s not uncommon for people to complain about their cold or stomach flu, it seems a lot less common for people to talk about long-term conditions, especially those including symptoms that aren’t visible. For instance, while multiple sclerosis is the most common disabling neurological condition of young adults, I can name only one person who I know has it.
I have no problem with talking about Huntington’s or sharing my status. Everyone I’m friends with knows my status, and everyone I’ve dated knew either my risk of being diagnosed or that I already had been. I have even brought up my Huntington’s during class discussions and with a professor after they gave a lecture on the disease. It’s as much a part of me as my eyes are blue, so why should I keep it secret? I’m not saying that I walk around proclaiming my status to strangers on the street. I mean that when the situation arises, I have no problem bringing it up.
I haven’t happened upon another young person who has the 50 percent risk or has already been diagnosed. Yes, Huntington’s is rare enough that it’s unlikely for me to stumble upon someone else with it. But since it’s an invisible disease, I could have already encountered another person with the diagnosis without realizing it.
Just as young people are now more open about mental health problems than past generations, I hope we become more open about physical health diagnoses. During my parents’ young adulthood, people rarely discussed mental health, but now it’s a common topic of conversation between my friends and me. For people I know, having a mental health disorder is normalized to the point where it is often a casual conversation rather than a shameful secret. That is how long-term illness should be discussed as well.
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