Laughter Is Essential for Rare Disease Patients

As many people living with Friedreich’s ataxia (FA) can tell you, our diminishing handwriting, balancing, speaking, and walking abilities are no laughing matter.

Or are they?

My sense of humor is a way of escaping my stark reality as a Friedreich’s ataxia patient, a reprieve from its depressing circumstances. My ability to laugh at myself and this progressive, lethal disorder keeps me sane.

Because my jokes seem dark and inappropriate, I never know if others will laugh along with me, or be aghast that I would joke about serious matters.

I witnessed a reaction to my sense of humor earlier this week at my personal training session. I’m lucky to have found Unique Health and Fitness, a gym designed for people with disabilities. While there, I was warming up by stretching and making small talk with my trainer. I asked him how his day was going.

“My day is going great!” he said, with his typically chipper attitude. “I had an awesome session with clients this morning, ate a great, healthy lunch, got to go for a long walk …”

“Showoff,” I replied.

For a second, all was quiet. I wondered if my dark, dry humor was out of place. 

I didn’t have to wonder for long, because he burst out laughing, and even turned to the other trainers in the gym and repeated our conversation to them.

“This guy’s got jokes,” he laughed.

***

Since FAers face the effects of our disorder every day, a sense of humor can be a huge benefit and make life easier. Similarly, when I volunteered at a hospice and interned at a mental health counseling facility, I was struck by the employees’ sarcastic sense of humor. 

Laughing at a depressing reality, such as dealing with progressive disabilities and death every day, seems to be a common coping mechanism. Is it needed, though?

I didn’t think so until I listened to an episode of one of my favorite podcasts.

“Hidden Brain,” hosted by NPR social science correspondent Shankar Vedantam, provides a social psychologist’s view on everyday life. From delusions to honor to nationality, Vedantam sheds light on many esoteric parts of human existence, and grounds them in practicality.

In the recent episode “Humor Us,” a sense of humor is depicted not only as advantageous but also essential to survival. Vedantam and his guest, behavioral scientist Jennifer Aaker, list many benefits that people receive from humor (the episode covers topics like brain chemistry and emotional connection with others), but sadly note that many people lose most of their sense of humor as they age. Compared with children, laughter is rare in most adults.

Since laughter can benefit everyone, and a sense of humor seems especially necessary for coping with dire circumstances, I vow to hold on to my sense of humor, even if it may seem dark and strange to some.

***

It was time for my final exercise at the personal training session. I was lying on my stomach, picking my upper body off the floor and lifting my feet at the same time.

“Looks great,” my trainer said, as I completed five of my set of 10. “Looks perfect.”

“I’m not even picking up my feet, though,” I whined.

“I’m looking at your feet right now and you are picking them up,” he countered, tired of me talking negatively about myself.

“Boy, shut up,” he scolded. “You can’t even feel your feet!”

I stopped my exercise for a few seconds and lay flat on the floor, laughing the deepest I had in a long time.

“See?” my trainer grinned. “I got jokes, too.”

Yes, he does. And laughter is key to my survival. I’m in the right gym.

Little victories.

***

Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.