How an AS Diagnosis Made YouTuber Zach Kornfeld Happierby Charis Hill Patient Expert
Zach Kornfeld announced he has ankylosing spondylitis (AS) on YouTube in 2017. Since then, he has continued to share his experiences with the disease as a member of The Try Guys, a YouTube comedy quartet Zach describes as “four guys who have tried everything from simulating labor pains to, trying drag, to swimming in the ocean with sharks.”
HealthCentral interviewed Zach by phone and discovered his approach to using ankylosing spondylitis as an opportunity to live a healthier and better life.
This interview has been edited for clarity.
HealthCentral (HC): What is it like living with ankylosing spondylitis and being a Try Guy?
Zach Kornfeld (Zach): I’ve found that my job pushes me in a way that is positive. It’s encouraged me to be active, to be out there, and be open to new experiences. But at the end of the day there are just some things that I’m not gonna be able to do the way that I used to.
Honestly, the hardest part about my job isn’t the things I do on camera. I’m a total workaholic, and a lot of success of our show is built on a ton of late-night editing and that’s just not feasible anymore. My body lets me know now: “It’s time to stop working.”
It’s funny, I mean, the disease is not good, and not fun, but it has forced me to revisit a lot of my work-life habits. I used to be wildly unathletic and unphysical, and AS demands that I change those things. It demands that I don’t work huddled over a computer for 16 hours a day. I’m the kind of person who doesn’t change anything until I absolutely have to, so life gave me a pretty loud wake up call, and I’ve tried my best over the past year-and-a-half to really listen and change the way I live.
HC: Since your diagnosis, what else has changed?
Zach: After that video I had so many people reach out to me. There were people that got diagnosed with AS after hearing me talk about my symptoms. The biggest thing is that friends and family are now holding me a lot more accountable to my treatment. It was easy to go through the day without doing my stretches and not eating as well, but now that the videos are up, people are like: “Oh my god, you feel this way? You have to take care of yourself!” I get a lot more calls from my mom checking up on me and seeing how I’m doing, and from my grandma as well.
It’s hard for anyone who’s not experiencing it to really fully understand. I definitely have times where family members are frustrated that I’m not doing more to help myself, and I have to tell them: “Changing everything in your life all at once is really overwhelming, and everyone goes at their own pace. I’m handling it the best I can, making changes steadily, and improving my life steadily; but it is a process.”
HC: How do you approach your self-care and treatment?
Zach: Before my second video, my medicine stopped working and it was a really slow process of acceptance. I just wanted medicine to solve all my problems.
The diagnosis was the first wake-up call. Once the medication stopped working, that was the second wakeup call. That really forced me to take a long look in the mirror and say:
“This is a lifestyle commitment. I can’t just rely on medicine. I need to be proactive about this. I need to test different things and monitor how different activities make my body feel. I need to commit to stretching and exercise to get ahead of this thing and to stay ahead of this thing. And if I ever want to go into remission it’s not going to be just because the medicine was magically working, it’s gonna be a combination of so many things.”
I’ve noticed lately that diet is a big one, so I’ve just been conscious of triggers. Especially on big weeks, the cleaner I eat, the better I feel. I do a walk every morning with my dog. I try and do stretches every morning before I shower. I have a portable TENS unit. It’s just having these things; even if they don’t totally help 100 percent, they just make me feel better mentally knowing I have them.
HC: Why is it important to speak out about ankylosing spondylitis?
Zach: When I was a kid, I got diagnosed with Obsessive Compulsive Disorder (OCD) and I had bouts of depression. In seventh grade, we were learning about OCD and there was this printout of famous filmmakers and artists throughout history who suffered from OCD and depression. Something that simple was enough to make me feel like I wasn’t alone.
Now I have this platform, and our content is about making the world a smaller place and highlighting people and making everyone feel less alone. I do that for other people’s passions and identities, and now I have an opportunity to do that for something I’m going through as well.
Talking about it has only led to positive things and changes in my life. Being open about my AS has introduced me to other people, it’s helped me deepen existing relationships, and it’s brought me new information about ways to care for myself in ways that I would have never expected. If you keep it to yourself, you’re just a one-person-army fighting this burden all on your own.
HC: Is there anything else you want to share with HealthCentral?
Zach: For me the diagnosis was scary, but it was also a tremendous relief. Despite the fact that it’s not something I enjoy, it has forced me to become a better person and that’s made me ultimately a happier person. I’ve discovered pretty quickly that treatment is a bumpy road; but it’s a bumpy road that, with luck, keeps you trending in the right direction.