top of page
Search

Exclusive Interview with Try-Guy Zach Kornfeld: Insights on Invisible Illness

Zach Kornfeld, 1/4 of the Try Guys and founder of Zadiko Tea Co., is an absolute internet legend. He is an author, director, producer, digital creator, and performer with an unbelievably witty sense of humor. With the Try Guys team, he uploads comedic youtube videos twice a week for their 7.3 million subscribers, trying just about anything for their audience. In 2018, the Try Guys won the Streamy Award for Show of the Year soon after launching their own company; in 2019, the boys published a book they co-wrote together entitled The Hidden Power of F***ing Up; last summer, they embarked on a 26-city "Legends of the Internet" tour. Presently, the Try Guys have been keeping us sane and entertained throughout the quarantine by sharing their socially-distanced #StayHome videos, podcasts, and (of course) a six-part "Tea Time with Zach" series all about his new business venture.


Illustration by @busybee.illustrates

Three years ago, on September 9, 2017, Zach announced that he has an autoimmune disease, more specifically Ankylosing Spondylitis. As he described it, the immune system attacks the ligaments between the bones and causes bone growth, creating inflammation and pain. Ankylosing Spondylitis (AS) is a type of progressive arthritis that leads to chronic inflammation of the spine, sacroiliac joints (connect the spine with the pelvis), and other joints and organs in the body. The vertebrae (spinal bones) and other bones can actually fuse as a result of calcification of the ligaments, significantly decreasing one's mobility. In Zach's case, his pelvic bones were beginning to fuse together at the time of his diagnosis.

In his first video about AS, "I Have an Autoimmune Disease," Zach candidly discussed his years-long journey to receive a diagnosis. His chronic back problems were initially ignored by doctors and later misdiagnosed as a minor form of scoliosis, but this could not explain the tremendous back pain he experienced on a daily basis. "I started questioning myself - maybe the pain is in your head? What a terrible thing to doubt your own reality," Kornfeld exclaimed in the video. After being referred to a rheumatologist and having an MRI, he received his official diagnosis of Ankylosing Spondylitis, which affects under 1% of the population. For Zach, it was a relief to have an answer and he began feeling better upon starting a biologic called Humira.

Yet, almost exactly a year later, Zach published a video on the Try Guys channel titled "I'm Getting Worse (Autoimmune Update)." He mentioned living with a baseline of pain every day, sleep interruptions, flare-ups, and the lifestyle changes that were necessary to complement the medication he was taking, all of which we discussed during our interview.


You mentioned that you started to develop symptoms, perhaps without realizing it, as a teenager. Did you know that there was something wrong and disregard it for the time being?


It took him several years to reach the proper diagnosis. but like so many others with an invisible illness, Zach acknowledges that the symptoms likely began long before he was aware of it.


"My chronic pain journey probably dates back to elementary school and I just didn't realize it yet. I had back pain as early as 2nd or 3rd grade. I was going to the chiropractor back then and everyone assumed I was just frail and weak and that carrying around multiple textbooks in my backpack was causing back pain. So I tried all of these alternate backpacks that did not work."


Zach's story does get a bit more complicated in that he was in a bad car accident in 4th grade, which he says almost served as a red herring. His doctors and family thought that his pain made sense given the physical trauma of the accident.


In high school, he explained, was when the pain significantly worsened, and his "hips were just a nightmare." It was unbearable to the point that he was unable to sleep through the night, waking up with the feeling that his hips were concrete, slowly turning into stone. A few months of physical therapy helped enough for the pain to subside, and Zach did not think about it for quite some time.

"I think a lot of people early in their chronic pain journeys - at least in my experience - want to just have an explanation so they can go back to not thinking about it. You just want to get it, forget it, and move on. And even once I was diagnosed with AS, it was a real bumpy journey for me to finally accept that this requires a full lifestyle change and a commitment to it or else it will just keep coming back."

I was wondering if you had given up on trying to receive a diagnosis, either prior to or after you were diagnosed with scoliosis?


Interestingly, and something that many people with an invisible illness can relate to, it was not a matter of giving up for Zach.

Diagram of Ankylosing Spondylitis Progression
"Humans are remarkable at normalizing things that are not normal... people with chronic pain know it all too well.

"I've had things that are radically abnormal with me but I did not have the awareness to know that it was. You have only ever experienced this one body, so I don't know what's normal. At a certain point, I guess I assumed that everyone who was out of shape hurt a lot. Then I would have these moments where I'd be like 'man, I exercise more than that dude and he's not complaining, or this is weird, right?'


Zach admits that this definitely took a toll on his self-esteem as a child. He would describe his pain to doctors and chiropractors, both of which unknowingly told him that he was "not strong enough." As a teenager, he told me that he never identified as sick because everyone, including himself, was simply unaware of his condition. Zach reflected that it was at that point he "adopted the persona of someone who is weak and used comedy to deflect." It resulted in apathy and bad habits of giving up at a young age, which took him a long time to overcome.


Ultimately, Zach believes that it was partially that he had given up, but partially the fact that he did not have the perspective to know that something was physiologically wrong.


Zach shared a funny anecdote that demonstrated this idea so perfectly:


"Well, I don't know if you want to talk about poop, but I'm gonna talk about poop. Not even until Buzzfeed (side note - where Zach worked with the Try Guys before they launched their own company), Keith was like, 'I poop three times a day.' I was like, 'wait, what?' And someone else was like, 'that's weird. I poop once, maybe twice a day.'" With the gastrointestinal issues that can arise with AS, Zach was stunned. His response: "'I guess I go once or twice a week if I'm lucky...' It was a moment where I just didn't know. I've always had this body, I've always experienced this pain. I just didn't know."


What inspired you to make a video about your diagnosis and experience thus far with AS?


"With the fact that I have a platform, I saw it less as a responsibility and more as an opportunity. It just felt like the right thing to do. It was a power and a way that I could use my experience to help others feel less alone and raise awareness for people who were struggling in the way that I had struggled for so long without a diagnosis."


As a child, Zach struggled with depression and OCD. He remembers being in a health class in middle school during which he saw a list of famous musicians, directors, and writers who shared the same mental illnesses. "Seeing those names told me that I wasn't alone. It made me feel okay about what was going on, and it actually empowered me... It taught me that this was not a death sentence. I've held that for a long time, and this seemed like a moment where I could pay it forward."


How did your family react to the video, and how involved have they been in your treatment plan?

Prior to releasing his first video, Maggie (Zach's now-fiancé) pushed him to go to his doctors and discuss a diagnosis that went beyond scoliosis. "Maggie saw my pain, she saw how I wasn't sleeping, and she heard my complaints. She did not accept that it was normal when I did."

"Sometimes you just need someone in your corner who can see you in a way that you are unable to see yourself."

After sharing his diagnosis with millions of followers, Zach's family was shocked to learn of the severity of AS. Zach admits that he was previously bad about keeping his family in the loop about his chronic pain journey as an adult. "I think that it was from a place of misplaced pride or thinking that this was my problem." Zach supposes that he is better at communicating via video than directly to people, but nonetheless this sparked his family's involvement in his health.


A story about his grandmother made me laugh, as I knew this was something my family would do as well: "My grandmother wrote to the Spondylitis Association of America and got the West Coast head to call my personal phone. I'm like, 'wait, grandma, what are you doing?' They got very engaged and involved in making sure I was doing not just the baseline but doing everything in my power [to make my condition better]. I feel like I was probably the laziest about this of everyone in my orbit, and I'm very grateful that they all pushed me to take it more seriously."


A quote from one of your videos really stuck out to me: "living with an invisible illness is a bizarre experience." Could you elaborate?

"When you hear invisible illness, you assume that you're talking about the other, but invisible illnesses are just as invisible to us as they are to the people around us."

"It can be really flustering and frustrating to not know exactly what is going on with you, and even once you do, you can't see improvement. The body is a lot more nuanced and subtle. One day you think you're doing great and then, all of a sudden, you're like 'my wrist hurts, or my shoulder hurts, what's happening?'"

"It can oftentimes lead you to feel alien in your own body."

As Zach expounded upon his experiences and desire to manage his AS, to have any type of chronic pain or invisible illness is to realize that you are not in control of your own body. There are forces around us and within us that are out of our control. It is a challenge to find acceptance to not push against it and figure out how to work with the grain.


Has that realization and new mindset helped you cope with flare-ups? What else do you do to try to cope with the uncertainty of it all?


"I think the knowledge that this is my normal helps." Currently, Zach has been focusing on physical coping rather than psychological, but acknowledges that both are intertwined.


"Frankly, I am trying to hold myself disciplined to the things that avoid flare-ups in the first place. So, listening to my body and saying, 'well, that food is delicious but I could never touch it again.' People are like, 'OMG, you can't have cheese or ice cream? That's crazy!' You know what's also crazy? Sleeping for three hours because you're in pain."


As I night owl, I certainly agree with Zach's sentiments: "Every morning, I want to do nothing. More than anything, I just want to be a loaf of bread on the couch. But I know that if I don't go for my walk, I don't do my stretches, and I don't hit a certain quota of exercise every week, I'm going to pay the price. It's adopting a mindset that, one I have no choice, but proactively finding a way into loving the things that make your body happy."


"I went on this hike in New Zealand, back when travel was a thing that you could do, and it absolutely kicked my ass. It was the hardest, most intense uphill forever and ever. Instead of focusing on how exhausted I was, I just kept saying, 'thank you, body, thank you, body' and focusing on how far I've come that I was able to do something like that."

"As for that moment now in time, maybe in 30 years, maybe in 10 years, I won't be able to do that." But right now, I can. While I can, I want to sip in gratitude at every step and really thank this vessel and not treat it as an enemy, but as a gift that I have right now.

Aside from physical therapy, what lifestyle changes have you taken to help with your AS?

Zach has used acupuncture and cupping therapy, both of which he found to be very effective. He created a home exercise set-up until he feels that he could safely return to a gym after they reopen. He has a portable TENS (transcutaneous electrical nerve stimulation; stimulates the muscles) unit, foam roller, rowing machine for low-impact exercise, and a yoga mat. With his diet, staying regimented and disciplined makes a world of a difference.

"The grand irony of my disease is that the more appropriately active I am, the better my body feels. But having it makes me want to do nothing because everything hurts."

I think it's clear that your lifestyle changes were accompanied by a change in perspective. Could you share how your mindset has shifted and why that has been beneficial?


"It's hard to say this, but it's having to get past resentment. It's not fair. This isn't fair, what you've got isn't fair. I'm a great person and from what I can tell, you're pretty great. There are some pretty shitty people out there that deserve to. bein pain more than us, I would wager to say that. So it is really easy to be frustrated and angry and feel scorned and go, why, why me? But, what good does that do? You can have your own little pity party, and then you turn to apathy, and then you just make your symptoms worse."

"Instead, it's learning the things that put yourself in a position to succeed, but also reminding yourself how grateful and fortunate you are to have this life. When you realize that every day is a gift, and that nothing should be taken for granted, I think that helps you do the work."

Speaking of the silver linings, I wanted to congratulate you on your Zadiko Tea Company success! The video series was incredible and I love how the teas have anti-inflammatory properties.


"Thank you! First and foremost, it came from a place of love. But when it came time for the actual flavor, I'm not delusional. I know that a cup of tea, even with anti-inflammatory properties is not treatment. But my hope is that it can be another tool in a chronic warrior's toolkit. Having that cup of tea that feels like a hug, that comforts, grounds, and centers me, but that gives me energy and clarity of mind, has been such a helper in the mornings." When it came time for Zach to create his own tea blend, he knew that this was what he wanted to see in the world and hopes to create that same experience for others.

I think it represents an incredible intersection of health and work, and I admire Zach's creativity in designing a product that is not only delicious but can also give us an extra boost. His first launch sold out in less than 24 hours for a reason!


In what other ways has AS influenced your work life? How do you try to set boundaries in order to preserve your health?


"As we both alluded to earlier, I am sick. I am very sick, I am chronically sick, I will always be sick, but I don't read as sick. Other people don't assume my limitations, and often I don't assume my own limitations and then I suffer for it."

"It's a never-ending war that you're waging against your own body."

Zach explained that it was necessary for him to weave it into his personal and professional life, or else he would pay the price for it in terms of his health and well-being.


With regard to how Zach has asked his team to support him through this, he tries to be very upfront with his team and let them know that moving forward, there are just some things that he cannot do. It is certainly difficult because there are some things that Zach says he wants to do for a video, but he has asked his team to question it rather than completely prevent him from pursuing it. This is the delicate balance between trying new things and living with a chronic illness. "I have needed to just create boundaries for myself because I know that if I do not put myself and my body first, I will pay an exponential price for it.

Zach has confessed that he probably does not do this as frequently as he should, but he tries to carve out time in his schedule for physical therapy. He is a self-proclaimed workaholic, something that we both have in common. "I allow myself to get overwhelmed with work and have stretches of time where I neglect my body, and I would argue that I just exited one after launching my tea company."

"From my vantage point, it is normal to regress. This is a life-long battle, and I am not perfect. Even though I know how important it is to stay on it, I slip up all the time. Hopefully, you steadily keep improving, and even though you bump up and down, your baseline keeps getting higher and higher."

This was such an important message to hear as a college student, but it definitely applies to any working professional with an invisible illness. "If you are an ambitious person, you don't want to feel like you're falling behind because your body hurts... Well, no one is, but we're not normal and I think it's okay to remind yourself that and be kind to yourself. You have to do everything in your power to prioritize your comfort."


I would be remiss if I did not ask you this: what has it been like to be immunocompromised in the age of COVID-19? What precautions have you been taking to keep yourself safe?


"Stressful. At first, it was unbelievable anxiety. I was scared in February when the first cases in the US started popping up in Seattle. I was afraid everywhere I went and no one was wearing masks at that point."


The Try Guys have been trying to respond to the best of knowledge within the industry. They began filming together in late June and stopped temporarily as the number of COVID cases in California began to rise again. They are filming together again while maintaining a "quarantine bubble" and are getting tested regularly. "This requires a lot of trust. I definitely have had to remind everyone that our bubble does not work if you see one other friend who has also seen one other friend. This is where, as someone with chronic pain who is immunocompromised, you have to be strong-willed and learn to advocate for yourself." The Try Guys and their crew have been doing this successfully, and all of their meetings and post-production work has been conducted remotely.


I saw a flash of this in one of your old videos and I am curious: have you read the spoon theory and used that analogy to explain your condition to people?


"I am super familiar with the spoon theory. I think it is brilliant and great and very helpful. I included a spoon at the end of my video as a nod to the community. I wanted to thank them for the hard work that they are doing, to let them feel seen, and to say I am beginning my journey of joining you." He has in fact used the spoon theory a few times early on in his chronic pain journey to explain how he was feeling.

"As a creative person, I have been trying to come up with something different - I don't even want to say better. I have been trying to write something to make a short about what my experience with it is. The spoon theory is so iron-clad that I'm like 'how do I do something original that communicates the same thing?!' I have been trying to come up with something equally as effective and it is hard; it is a really damn good way to explain to other people what it's like.

Do you have any additional plans for future advocacy work?


At the moment, we can look forward to a short film (hopefully coming soon!). However, Zach thinks a lot about how he can integrate it into his content and how it will be most effective.

"Sometimes that is making videos that are specific to AS, which tend not to be my most viewed videos but among the most impactful. Sometimes it's just mentioning it in a totally otherwise unrelated video to normalize it and create a sense of inspiration."

"The other thing that is interesting for a lot of people with chronic pain is that the dreams that I grew up with don't change just because I have AS. I think there is a balance of wanting to realign your life with this new identity and new responsibilities you have, but also allowing yourself the freedom to do things that are unrelated."


Is there any final message that you would like to share?


"To anyone who is going through this or is searching for a diagnosis: be kind to yourself, listen to your body, and afford yourself some patience. This is not something that is easily fixed. It requires you to buy-in and know that you are doing things that are prioritizing yourself."

"It is okay to be selfish when that means that you are doing things that will prevent pain and promote health. And that's not being selfish, it's being smart."

What an incredible way to end this interview! It was an honor to have a candid conversation about AS and invisible illness with Zach Kornfeld, and I truly look forward to watching that short film in addition to all of the amazing projects he has been working on. The Invizibles wants to send a huge thank you to Zach for his time, honesty, and reflection on living with an invisible illness. Living with an invisible illness is such a unique experience, and it was fascinating to hear about it from Zach's perspective.

Screenshot from the interview with Zach
 

How can you get involved with The Invizibles?

You can share your story! I am starting a special series as part of the weekly blogs in which I interview others that have struggled with an invisible illness. If you are interested in sharing your experience, please email theinviziblesorg@gmail.com.

I am also holding a printed-collage fundraiser to raise money for invisible illness research, Custom-made collages can be printed and shipped to your doorstep, and 100% of the proceeds will go towards scientific research funding. Fill out this form and you will be contacted for confirmation: https://forms.gle/faEuEiuzZ2vL4XUS7.


There is an open forum on our website where you can ask questions and share your thoughts regarding invisible illnesses. Everyone is welcome to participate in discussions.

Subscribe to our email list at the bottom of this page so you never miss out on a blog post or exciting announcement.


Follow our social media pages for updates! You can find us on Instagram @theinviziblesorg and on our Facebook page, The Invizibles Org.

Members can contact us on our website or via email with any questions, comments, or concerns. We hope to hear from you.


Comment down below a question that you would've asked Zack, and let us know what else you want to see for The Invizibles!


Invisible illnesses present hidden challenges; let's uncover and solve them together.

4,138 views0 comments
Post: Blog2_Post
bottom of page