John Green has had obsessive compulsive disorder since he was a kid. He won’t sugar-coat it. It’s not easy, and some days are hell—not just the compulsive behaviors that other people see, but the relentless spiral of thoughts that they don’t. These thoughts used to make him feel alone and ashamed, and like he’d never escape his OCD. “I don’t want to minimize how hard or how painful it is,” he says.
But that’s not his whole story. John Green on how a lifetime of OCD inspired Turtles All The Way Down
“I also have a really good life,” he says. Green is a husband and father, a YouTuber (Green and his brother Hank co-host the Vlogbrothers channel, which boasts nearly 4 million subscribers known as “Nerdfighters”), a philanthropist, and most famously is the author of six novels, including the international sensation The Fault in Our Stars.
OCD and the good life “can coexist,” he recently explained in a conversation with NOCD’s Clinical Director, Patrick McGrath, PhD. “I’m not here to tell people you should have hope that life is sunshine and rainbows and never a struggle,” says Green. There are times when OCD feels “like this is the whole story of your life. And I understand falling for the lie. I have fallen for it many times myself. But it is a lie.” With treatment, determination, and help, he beat back the obstacles to a good life with OCD—not just the ones inside his head, but the misunderstandings and stereotypes many people have about the disorder.
We at NOCD are incredibly proud to partner closely with Green to educate people about OCD, combat misinformation, and help them get better by accessing exposure and response prevention therapy with an OCD specialist—the same form of treatment that helped Green get his life back. “[We’re] on a mission to make exposure and response prevention therapy more accessible to more people,” Green says. “If you struggle with OCD, there is help out there to help you relieve your symptoms. For me, I suspect I’ll always live with OCD, but great therapy has helped me to manage my symptoms and regain my life.”
The myths about OCD
In the years after The Fault in Our Stars was published, Green mined his lifetime of OCD experience to create a novel about what it’s truly like to have the disorder: Turtles All the Way Down. The movie version, directed by Hannah Marks, is available now for streaming on Max.
“I’ve lived with obsessive-compulsive disorder most of my life, which has been debilitating, often, and even all-consuming,” says Green. “But OCD is treatable, and I’m living evidence of that. In my novel about OCD, Turtles All The Way Down, I write about exposure and response prevention therapy, which is the gold standard of OCD treatment—and it has benefited me tremendously.”
The new film adaptation of Turtles All The Way Down brings many aspects of Green’s inspiring journey to the screen. It tells the story of Aza Holmes, a typical moody 16-year-old with teenage angst about love, identity, life, and her future—who is also struggling with OCD. Aza would love to kiss Davis, her childhood crush. But she can’t, because of her relentless, terrifying thoughts about the billions of bacteria inside her (and him). Aza’s best friend Daisy loves her and seems to “get” her. But Aza’s OCD exasperates her and drives a wedge between them.
OCD is treatable, and I’m living evidence of that.
It’s not a totally autobiographical story. “I changed some of the focus of her obsessive fears just to keep myself feeling safe,” Green says. Still, he poured his pain, struggle and ultimately optimism about his own OCD into the book, to make a portrait of the condition as it really is.
“I’ve been very frustrated sometimes with the portrayals of OCD in the media,” he says. “Seeing it romanticized as a disease that gives you secret superpowers—like it makes you a brilliantly observational TV detective—or as a disease that’s highly stigmatized, that’s treated as freakish. Especially around the compulsive behaviors, which are treated as sort of a spectacle.”
Both the superpower and freakish stereotypes come from what others can see: the seemingly weird, repeated actions (compulsions) that OCD sufferers engage in to try to calm their obsessive thoughts. But, Green says, “There’s a reason that the O comes first in obsessive-compulsive disorder.” It’s the obsessions—those terrible fears and worries that hijack the mind—that make OCD so scary and painful for people who have it.
What OCD is really like
This is what most people don’t understand, Green says: The fears that OCD forces into your thoughts are as real and dire as a runaway train or an earthquake. “The brain spinning, returning, returning, returning, returning, checking, checking, checking, checking, asking, asking, asking, asking—it just takes over. And when it takes over, that’s when I can’t even read a menu,” Green explains. “I’ll be trying to listen to somebody. My kid, even. I really want to be there and I’m giving everything I can to listen. And it’s just not possible.”
In these moments, he feels himself heading into a spiral of thoughts that will never let him go. As Aza explains in Turtles All the Way Down, “The thing about a spiral is, if you follow it inward, it never actually ends. It just keeps tightening, infinitely.”
That’s what makes compulsions so different from freely chosen actions. “There’s nothing unreal about the pain or the fear or the overwhelmingness,” Green says. “That’s really how I felt—like this is never going to release me, it’s just going to get more and more and more intense forever. And that is its own form of terror.”
In this situation, he points out that compulsive behaviors, like rereading articles about microbes, drinking sanitizer, or picking at a wound don’t feel weird. “I’ll do whatever I need to do to not feel that pain,” says Green.
Like Aza, he has fears of contamination that lead him to even deeper fear spirals—not just about whether he might get sick, but whether he exists at all. After all, “If 50% of the cells in my body aren’t mine, and some of those cells are responsible for some of my thoughts, then I start to feel like, ‘Well, am I me?’ To what extent are you really real? And that becomes its own focus of obsessive fear, and its own thing that’s hard to close the loop on,” says Green.
There’s no perfect answer that satisfies OCD
The title shared by the novel and its movie adaptation, “Turtles All The Way Down,” comes from a story about an old lady who tells a scientist that he’s wrong to say the Earth is round. The Earth, she says, rests on the back of a giant turtle. “But what does the turtle rest on?” he asks. “Another turtle,” she responds. And what does that one rest on? “It’s no use,” she answers. “It’s turtles all the way down.”
To Green, there are two reasons that the story provides an apt lesson for people with OCD: “One is that when I am looking to close that loop, to get enough information to finally be able to not be fearful anymore, I am looking for the bottom turtle—and there is no bottom turtle,” he says.
And the other is that no one can really explain OCD—including himself. “I’m never going to be able to fully understand why I’m afraid, why this is happening. Instead, I just need to accept myself as I am,” says Green.
The novel also shows OCD affecting Aza’s relationships—with her mother, her therapist, her crush, and her best friend Daisy.
“I wanted to show both how it affects the self or the sense of self, but also how it can have such a profound effect on relationships,” Green says. “I mean, [OCD] affects my ability to be the dad that I want to be, the husband I want to be.”
For Green, love for others was, “the biggest impetus to aggressively pursue treatment—feeling it’s not just about me. I have other people in my life, people I love, whom this is affecting.”
I’m never going to be able to fully understand why I’m afraid, why this is happening. Instead, I just need to accept myself as I am.
Getting help for OCD
Aza’s story takes a similar path. She evolves from resisting medication and treatment options to a decision to take effective action. Aza goes for a treatment that has been proven to work: Exposure and response prevention therapy (ERP).
ERP is a carefully guided journey through the experiences that trigger OCD thoughts and fears, starting with mild ones and working up to the really distressing. The exposure part is allowing the trigger in. Response prevention means not doing the compulsive response that your OCD is screaming at you to do RIGHT NOW.
For example, in Green’s novel, Aza has a wound on one finger that she constantly reopens and cleans to reassure herself that she’s fighting off the germs she fears so much. Part of her ERP work requires her to put her “callused finger against a dirty surface and then not clean it or put a Band-Aid on.”
It frightens Aza, just as it might frighten anyone with OCD who starts ERP. It certainly scared Green.
“I was definitely highly resistant to ERP when it was first presented to me,” he says. “It seemed like exactly what I didn’t want to do. It seemed like the opposite of a good idea.”
But he discovered, as Aza does in the film, that as uncomfortable as ERP can be, it actually works. In fact, its scariness is the point: “ERP has the goal of learning that you can handle emotional discomfort—that this emotional discomfort is not as catastrophic as it feels like it’s going to be,” Green explains.
“It’s very effective. And it is the gold standard of treatment for OCD,” Green says. “So it was important to include that in the film. The quickness with which she says, ‘That’s not going to work for me. I’m not open to it.’ And then over time, to come to a place where she is open to it and understands that it will be an important part of her life.”
[ERP] is very effective. And it is the gold standard of treatment for OCD. So it was important to include that in the film.
ERP, Green says, is one of the key reasons his days today are rich with love, work, and meaning. “My life is so much better than when I lost eight hours a day to compulsive behavior and sweating through intense fear that I was trying to manage. ERP is uncomfortable. But the rewards are real.”
“Every single one of [NOCD’s] therapists is specifically trained in ERP and has a deep understanding of obsessive-compulsive disorder. So you’re not just being matched with some therapist—you’re being matched with a therapist who actually understands OCD and how best to treat it.”
Feeling seen
Without getting into spoilers, it’s fair to say that Aza comes out of her journey looking forward to a better life. As realistic as the book and movie are about OCD’s challenges, they are also true to life in showing that people can be much more than what OCD tells them they are.
Just the fact that a high-profile movie accurately depicts OCD may help people living with it, Green says. He hopes OCD sufferers who view the film “will feel seen,” he says. “And I hope they’ll understand that they are not alone. Because OCD can be very isolating. I have often felt like ‘Nobody else thinks this way. Nobody else feels this way. This is freakish. This is weird.’ And that’s not so.”
As a teenager who just thought he had weird thoughts no one else could ever have experienced, he says, he would have been relieved to know that there was such a thing as OCD, and that he was struggling with a real mental health condition. “It was a big relief for me to have a name for it,” he says.
Today, thought spirals don’t plague him, though he’ll never claim he’s cured. He’s careful to take his medication and check in with his therapist. After all, OCD is insidious, trying for footholds in anything you care about—for example, researching a novel about OCD.
I have often felt like ‘Nobody else thinks this way. Nobody else feels this way. This is freakish. This is weird.’ And that’s not so.
“OCD wants you to have all the knowledge so you can close the loop […] So you can say, I’m definitely not going to get this disease, or I’m definitely not going to have this happen to me,” Green says. “But of course there is no amount of knowledge that will allow you to close that loop. Compulsively checking for it can bring a little bit of relief. But then suddenly now I’m spending six hours a day checking the same websites, reading the same books. This was a challenge for me when I was writing Turtles All the Way Down. Reading about OCD became a sort of obsessive thing.”
He knows he’s crossed a line, “when I know I’m losing time, and this is taking away from my relationships, and the work that I want to do. But honestly, that’s part of the reason I still need to be able to check in with my therapist. Because it’s hard for me to know where the line is.”
Getting to a good place—and staying there
As the movie comes out, Green finds himself in a good place these days; he’s writing, raising millions for philanthropies, and continuing to be a husband and dad. Around the time he finished Turtles All the Way Down, in 2016, he even drove the pace car in the Indianapolis Grand Prix—a fun adventure that OCD would never have allowed him to enjoy if he hadn’t fought it off.
“I still lose some time every day to obsessive worry,” he says. But treatment works: “I don’t want to pretend that I’m cured. But I’m able to have more of a life, and a certain amount of freedom.”
Turtles All The Way Down is available for streaming on Max.
If you or anyone you love is struggling with OCD, you’re not alone. NOCD Therapists have specialty training in OCD treatment, and we accept many major insurance plans. Reach out to us—we’re here to help.
