My Life Didn’t Change on The Day I Got My Test Results

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by Alexus Jones |

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I mentioned the day that I received the results of my genetic test in my first column. It was a Friday. I had been told to make plans for that day, because not knowing what you’re going to do can contribute to stress. However, I didn’t arrange anything, partly because I don’t like being told what to do and I had no idea how I was going to react to the results.

Correction: I had one plan. I wanted to eat at Qdoba. I had a 2 p.m. appointment at Beth Israel in Boston, which is within walking distance of my favorite outlet of the Mexican restaurant chain. My friends agreed to eat with me afterward. Now, I adore dining at Qdoba and wanted to save my appetite for when I got there, so that day I accepted that I would be eating at 3 p.m., a far cry from my usual 1 p.m. lunchtime.

I took a Lyft from my sorority at about 1:30 p.m. with four of my closest friends to Beth Israel. One friend is adept at following hospital signs, so she led the way to the social worker’s office once we’d arrived. I checked in while my friends found seats. They are not a quiet bunch, and another woman in the waiting room looked unhappy with their loud conversations about the upcoming weekend and school-related complaints. I would usually be uncomfortable at making a spectacle in public, but I was grateful for the distraction. My friends’ high spirits kept me grounded while inside I was flipping between feeling hopeful and resigned about the news that I had expected my entire life.

Eventually, the social worker came to get me and asked if all of my friends were accompanying me, considering it might be a bit tight. I didn’t want to offend anyone by asking someone to stay behind, so I responded that we could squish. 

On the walk to the office, I remember one friend asking if anyone knew the hospital’s Wi-Fi password. I felt a small spark of happiness at this relaxed question. Looking back, I realize that it was probably because she was in charge of calling my parents and needed a better connection. 

We walked into a room full of somber faces that told me the results before anyone spoke. All the hope I had been holding onto died at that moment. I felt sad and heartbroken, but the news didn’t hurt as much as when my mom told me that she had Huntington’s. The genetic counselor asked how I was, and while I felt sad, my overwhelming feeling was hunger. So I replied that I was hungry. 

Getting my results has meant so much, yet so little at the same time. On one hand, nothing in my life changed. I still had to find an apartment and finish my degree. I was due to start a new job the following July. On the other hand, it felt that a part of my future was defined. I eventually will have to deal with this result. I hope that, by then, treatments for Huntington’s will exist. But I refuse to allow my life to be disrupted in the short term.

After we left the medical center, we went to Qdoba, and the food was as delicious as I had anticipated. I spent the day behaving as I normally would: I binged Netflix with a friend, attended an event that served free food, and went to see the new “Avengers” movie.

I was not going to live differently — except for starting to write a column for BioNews Services. Nothing else in my life changed that day. I’m still close with my four amazing friends who accompanied me to the appointment. I found an apartment and started my job. I know that my life will be significantly altered by my diagnosis someday — but not today.


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.


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