Why Empathy Is an Important Part of Huntington’s Disease Awareness Month

I recently gave a presentation at an event, during which I explained that my wife and daughter have Huntington’s disease (HD). I then showed a video that illustrated the devastating toll the illness can take on a gene-positive person’s mind and body.

After the presentation ended, I wasn’t surprised when no one came up to me to express sympathy or empathy for what my family will experience in the years ahead.

I value empathy a lot.

I value it so much that I have written about it and given workshops on it to inspire people to become more empathetic. The reason is simple. Young people’s empathy levels have been decreasing in recent decades, according to Sara Konrath, PhD, an associate professor of philanthropic studies at Indiana University, director of the Interdisciplinary Program on Empathy and Altruism Research, and a guest on the “Speaking of Psychology” podcast.

Knowing this, I did not expect anyone to share my emotions about my family’s fate.

I share all of this to highlight the importance of Huntington’s Disease Awareness Month, which is celebrated in May. Most people I know have never heard of HD. It makes sense. It is a rare, neurodegenerative disease, and only about 30,000 people in the United States have it.

Because it is so rare, I am not shy about sharing the ways HD affects families, how it sucks to see loved ones suffer. But the main reason I share is to wake others up.

Suffering surrounds us like air. When I was a kid, I once asked my dad why there was suffering in the world. My father paused for several seconds. He was wise, so he probably knew his answer would deeply impact me and wanted to reply with something profound. The fact that I remember it years later indicates that he was right.

He said, “There’s suffering in the world because mankind is selfish. Suffering is a way for people to stop thinking only of themselves and to love others who need their help.”

In the years since my father shared that piece of wisdom, I’ve realized why he responded that way. I can be extremely selfish at times, and considering all the divisive issues in the world, I’ve also realized that selfishness is like a disease. It can make us die slow and unhappy deaths.

So, my wake-up call to others is that some friends and family members need others to forgive them. Some people are lonely and need someone to call them. Some co-workers need an encouraging word. Someone, somewhere, in that person’s orbit is suffering — from an illness, a job loss, or sadness. They need empathy to kickstart compassion and kindness.

When I raise HD awareness by defining the disease and sharing how it affects my family, perhaps the people I share it with will become more empathetic. Huntington’s is rare, but empathy doesn’t have to be.

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