Addressing the Anguish that Comes with Diagnosis

Alexus Jones avatar

by Alexus Jones |

Share this article:

Share article via email

As I’ve mentioned in previous columns, my mother received her Huntington’s diagnosis almost a year ago. My parents waited to tell me until I arrived home for winter break from school because they didn’t want the news to affect the end of my semester.

I remember the moment she told me. It was like time had slowed down. She didn’t have to say the words. Instead, with tears streaming down her face, she explained that she had been depressed and anxious and had gotten tested. I repeated the word “no” over and over, hoping that if I said it enough it would stop being true.

Once I regained my ability to think, I was struck by the unfairness of her diagnosis. I had already lost my grandfather, who was my father figure as a child, to this disease. My mom and I are incredibly close; she is one of the few people I confide in. It isn’t fair or OK for her to have this gene. 

One of the most devastating aspects of Huntington’s disease is that the person you say goodbye to in the end isn’t the same person who received the diagnosis. As a neurodegenerative disease, it changes their brain. The fear of my mom losing her personality physically hurts. I can’t imagine her without her unique wit and sarcastic humor.

When my mom broke the news to me, all she could say was that she was sorry — as if it were somehow her fault. As if she chose to inherit Huntington’s without giving it much thought. I assured her that she had no reason to apologize, and we would get through this as a family. 

We are all dealing with the news in different ways. My father is involved with activities at his church. He also writes the column “A Family Tradition” about taking care of my mom. I have read some of his columns, but not all of them. I’ll occasionally read one when I think that I can handle it. But honestly, it hurts too much sometimes. As I’ve shared in a previous column, I manage things in a piecemeal manner.

Once a week, this column forces me to sit down and think about Huntington’s. And I know that my parents read all of my columns.

While the news of my mother’s diagnosis is still devastating and scary, I’m starting to accept it. I don’t think that I’ll ever be OK with it, but I’m hoping that one day I can talk about it without bursting into tears.


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.


Leighsa Robinson avatar

Leighsa Robinson

My mom was diagnosed as well and we all knew it but didn't want to admit it. We ended up telling her after the official diagnosis and she also apologized to us while tears were streaming down her beautiful face. Every family has some kind of demon to deal with whether it's cancer, cardiovascular disease, HD, or something else. We deal with HD. My brother has recently been diagnosed and my sister and myself tested negative. So thankful for the research efforts. A cure is in the near future.

Alexus Jones avatar

Alexus Jones

Hi Leighsa,

I can relate to your way of thinking. I also am really counting on a cure or an effective treatment.


Bruce Saltsman avatar

Bruce Saltsman

My wife has HD. Our youngest son just got his test results. He tested positive. Keep praying for a cure.

Alexus Jones avatar

Alexus Jones

I understand how hard that must be. Your prayers for a cure are always welcome.


Leave a comment

Fill in the required fields to post. Your email address will not be published.