Huntington’s Is Not My Secret

Alexus Jones avatar

by Alexus Jones |

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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.


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.


Sharon Walker avatar

Sharon Walker

I don’t think the star rating is working. The article is so honest, and I appreciate it. My family has Huntington’s from my first husband, and there is so much to deal with and each person does in his own way. May God bless everyone touched by this disease and bring a cure soon.

Alexus Jones avatar

Alexus Jones

Thank you for reading! There is a lot to deal with, and being able to talk about it is an important part of that journey.

I will tell someone about the star rating.

Eilene Ballman avatar

Eilene Ballman

In my family, past generations not only didn't talk about HD to strangers or even to friends, but it was never talked about in the family. My Mother never knew what the reason was for her mother being locked up and we never knew what was wrong with her until she was so advanced that she had to go to a nursing home. A few years after that, I started work at the Regional Treatment Center as it is referred to now. It was just the State Hospital then. We had a patient with Huntington's and we had an in-service we were required to attend. It was informational but the doctor went off on a slight tangent on how people that have the disease should never have children, etc. After the class, I went up and told him that my Mother had HD and I wasn't sure I could agree with his stance since I would not be alive if things ran the way he wanted. He was very apologetic and I think (I hope) he learned to keep those thoughts out of an in-service where he didn't know to whom he was speaking. That was actually my second instance of a doctor telling me that. When I first started at the hospital, I asked the doctor on our unit if he had any information on HD that he could share with me. That doctor referred me to the head of the hospital and he proceeded to tell me I should think long and hard (which I actually agree is good form no matter what) before having children. He share information with me and I thanked him and left. The next day I was called back to his office where he apologized to me and said he had looked at my employment file and seen that I was 30, married, and had three children. He said I looked much younger and he didn't think I had children and he would certainly never have said to me to consider not having children if he had known. I was not upset by him saying that and assured him I was quite fine. I know it could be quite hurtful to some people to hear those things though. I will be 69 this summer and consider myself blessed to not have HD because passing it to my children was my biggest fear. I made sure they knew about HD and the implications so they knew the possibilities when they started dating. I am glad to know people are being more open about things now even though we have a way to go.

Alexus Jones avatar

Alexus Jones

Hi Eliene,

Thank you for sharing your story. I cannot imagine growing up not talking about it with my family. I am glad you are a part of the culture of making HD something we can talk about.



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