When Try Guys member Zach Kornfeld announced he has Ankylosing Spondylitis (AS) in September 2017 I was so relieved.

I know what you’re thinking. Relief sounds super self-centered, so let me say right now that I was also really sad for Zach’s diagnosis; I wouldn’t wish Ankylosing Spondylitis on my worst enemy. But when you live with a common-but-unknown disease, awareness is what you live for.

Well, it’s what I live for anyway. And when a celebrity makes an announcement a lot of people pay attention.

Zach’s video marked the second “Ankylosing Spondylitis coming out” by a celebrity figure in two years (Dan Reynolds announced his in 2015) and it made a big splash in the AS community. Spondylitis Twitter was buzzing. Spondylitis Facebook and Instagram were buzzing, etc etc. It was exciting to see someone talking frankly about AS to a really large audience (as of April 27, 2018 the video had nearly 4.9 million views). Zach was telling all our stories by telling his own and we clung to this moment as a chance to be seen and heard.

Here, let me lay this out for you better.

Ankylosing Spondylitis is an immune-mediated inflammatory disease that can progressively damage joints in the body, especially in the spine, and in some cases cause the spine to fuse into a column of rigid bone. Additionally, AS is a systemic, or whole-body, disease; so it can cause fatigue, cognitive impairment, sleep impairment, and damage multiple organs in the body. There is no cure, so the goal for treatment is to reduce inflammation to slow the progression of the disease and manage symptoms.

Many of us who have AS had never even heard of the disease before a doctor sat us down and opened their mouth to a flood of slow motion gibberish, “You have A n k y l o s a u r a s d i n o s a u r S p o o n d a c t y l a u r u s B l i b b i d y B l o p p i d y B o o.”

Then, as if our disease isn’t hard enough to pronounce, our own friends and family struggle to even understand what we’re experiencing and that it’s serious. And a lot of general practitioners have already forgotten the one paragraph about AS they read during medical school. There are even rheumatologists (the specialists who treat AS) who refuse to diagnose women. More about that another time.

And yet AS affects so many people. Ankylosing Spondylitis falls under an umbrella of diseases called Spondyloarthritis, which affects an estimated 2.7 million people in the USA alone. That’s more than Amyotrophic Lateral Sclerosis (ALS)/Lou Gherig’s Disease, Multiple Sclerosis, and Rheumatoid Arthritis combined. Estimates vary regarding the number of people specifically with AS in the US, but it is the most prevalent type of Spondyloarthritis. That’s a LOT of people.

There are more people with ankylosing spondylitis in the USA than there are Episcopalians.

Just, fyi.#spotspondy #spondywhat

— BeingCharis (@BeingCharisBlog) April 26, 2018

I wish nobody had AS, but since a lot of us do and we largely suffer in silence, Zach’s video was cause for celebration – not for his being diagnosed, but for his willingness to talk about it in front of millions of people.

When I saw his video I knew I wanted to help his story reach more people. I knew I wanted to talk to him.

So six months later I reached out to him about a chronic disease documentary I’m in (shameless plug) and it turned into a Skype interview.

And we ended up covering so much material I decided to make this a two-part blog post.

First of all, during the call it was quickly apparent that Zach had already mastered the pronunciation of the word ‘ankylosing,’ so half my job had already been done for me.

By the way, here’s the correct pronunciation:

Second of all, in real life he’s the same as he appears on video: animated, sociable, witty, and, well, he jokes around a lot. I mean, a lot. He’s a Try Guy for real, it’s not just a character he plays. Well, I guess he plays himself. And while I came prepared with the questions I thought I wanted to ask we ended up relaxing into a conversation about both our journeys.

I just want to say, as an Ankylosing Spondylitis writer and advocate I’ve interviewed one other person about AS – Dan Reynolds – and in that situation I was a journalist; my story was the reason I was there but my having AS was nothing more than a side story. With Zach, though, we spent considerable time comparing our experiences and learning from each other – Zach’s not even a year into his diagnosis, so he had a lot of questions for me too.

Zach’s Story’s Impact

You can best learn about Zach’s diagnosis story from his vlog announcement. I hope you’ll watch it (10 minutes) so the rest of this post will make sense.

It’s helpful at this point to understand a common theme in The Try Guys’ work. The way Zach describes it:

“People can watch our videos and be like, ‘Oh, these are just guys who do crazy shit,’ but, the crux to what we’re doing is we’re trying to connect to people’s identities and their passions… We do things that are real to real people’s lives and either help people see themselves or help people reach out and communicate ‘This is who I am,’ by inviting us in and allowing us to experience their lives with them.”

He continued, “We had been wanting to try the vlog format [to] break down the barriers and reach out directly to the audience and let them into our lives a little more directly.”

Zach was the first Try Guy to test the vlog idea and it turned out that sharing his personal story got to the heart of the Try Guys’ mission, evidenced by the overwhelming response to the video.

Zach said, “It’s not the most-viewed video I’ve ever done, but um, it is certainly the most impactful, …just the amount of responses. There were some who said ‘Oh my God, I found out I have Ankylosing Spondylitis because of you, so thank you.’ Hearing me describe my symptoms made them realize, ‘Wait, that’s what I have.’”

Others told him they had been living with depression and because of his video they could finally acknowledge it.

Now I, Charis, have a confession. My life is so radically centered around raising awareness of Ankylosing Spondylitis with the hope for a cure that I forget that raising awareness also means more people get diagnosed along the way. And that’s exactly what Zach’s video did – it helped countless people recognize their own symptoms and seek a diagnosis, and many of these people thanked Zach for being the reason they finally got an answer whether they were diagnosed with AS or a similar disease. One of these stories in particular stuck out to Zach and to me:

“I got this one email from this trans high schooler who was getting bullied by all of his doctors, being told to lose weight and that was the only reason that he was, um, going through pains because he just wouldn’t accept his body. And he found out he had Ankylosing Spondylitis and Lupus and it was because of the video and I just had a cry session in my apartment by myself.”

Wow. Right?

Which leads me to the next thing. What it means to be diagnosed.

VALIDATION

Something we discussed in more detail was how validating it was for Zach to be diagnosed. Finally he knew what was wrong with his body. Having an answer was everything.

He went from this (pre-diagnosis Zach):

“I was a zombie in my own skin – like, I was like an alien guest wearing my own skin, where it’s like…a weird sleepy simulation of what it’s like to be Zach.”

“There were days where it was bad and then there were weeks where I wouldn’t feel it. So there was a lot of doubting my own reality of not being quite sure what this thing was – and I didn’t have a language for it. The pains that I was having didn’t seem to match up with anything I knew of.”

To this (post-diagnosis Zach):

“I honestly think it was the biggest relief I’ve had in my life… I don’t say that to belittle the seriousness of it. It’s just this, I thought I was crazy. For the longest time I just had this pain and I had no explanation and I couldn’t even trust myself that it was real pain. So, getting a diagnosis to me meant 1) That I was right, and I knew what was going on [in my body] and 2) Now there’s a path, right? Because before I was just in darkness, and every single direction looked the same and it all looked painful. So, the diagnosis for me meant the hope for a way out. It meant that it came with medication, it came with a set of predictable symptoms and actions I could take, it meant there are other people that are going through the same thing and I could lean on their knowledge, and yeah, it meant things like targeted physical therapy….and yeah, I guess now I’m looking for the end of the sentence. It was the difference between keeping living and not. It was the difference between having a next step and continuing to live in uncertainty forever.”

This is a common theme in the AS community – so many people feel such relief when they are diagnosed because they finally have answers and options, just as Zach said: “It was the difference between having a next step and continuing to live in uncertainty forever.”

Ankylosing Spondylitis has an average delay of diagnosis of 8-11 years. Zach and I both had symptoms starting in middle school or earlier and we were both diagnosed when we were 26. That’s 13+ years of suffering and doubting our own reality.

Here’s where my story takes a different path. For me, getting the diagnosis wasn’t a relief. My dad had AS and I grew up watching his back curve forward more each year and in the end he looked like a walking question mark – his face was horizontal to the ground and his spine was one column of inflexible bone perpetually lurching forward. Growing up I’d been told AS was a man’s disease, so I wasn’t too worried about getting my dad’s disease (we’ll talk about genetics later). So when I was diagnosed I was absolutely devastated. All I could think about was becoming just like my hunchbacked father.

FYI – AS is most definitely NOT just a man’s disease.

AS Never Goes Away

But enough about me. Back to Zach, who admitted that after beginning treatment for AS he started slacking. And it didn’t take too long for AS to remind him to pay attention:

“I was like great, I have medicine, the medicine’s working. I don’t need to learn more about this disease; I don’t really need to think about it. I just give myself a shot – done. I made that video… It was reaching people and I helped some people and I was really proud of it. But if I’m being completely honest, I stopped thinking about it. Um, and then it started getting worse.”

“The pain started coming back, you know, just like a day or two at a time. I use this metaphor where if you drop a frog in a pot of boiling water it’ll jump right out. It’ll say, ‘You’re trying to kill me!’ But if you put a frog in water and slowly increase the temperature it’ll sit there until you boil it to death. That’s what happened to me the first time and it’s what started to happen the second time.”

Now nearing his one-year anniversary with the diagnosis, Zach’s still learning about the permanence of AS and the fact that it’s always there beneath the surface even when the treatments are helping. And he’s recognizing that he has to pay attention to any changes before things get out of hand again.

For everyone I’ve talked to, AS becomes a job for those who have it – a balancing act for the rest of their lives marked by periods of notable disease flare-ups (for many) and, for others, periods of disease inactivity. It’s important to note here that Ankylosing Spondylitis is incurable and affects everyone differently, so Zach’s AS will not be my AS will not be your AS.

And that’s where I’m going to leave the conversation for now.

Ready for part two?

That was getting really interesting, wasn’t it? I can’t wait to share more soon.

In part two, I’ll share Zach’s approach to living with AS and dive deeper into his decision to announce his diagnosis on YouTube, plus talk about what advocacy looks like to both of us. And I’ll also share his exclusive message to the AS community. Oh, and perhaps there’s a mention of Stanley Kubrick as well.

In the meantime, what’s one question you would ask Zach? Put it in the comments below.

Learn more about Ankylosing Spondylitis and Spondyloarthritis from the Spondylitis Association of America by clicking here.

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