EXCLUSIVE: John Green recalls how OCD struggles as a teen inspired ‘Turtles All the Way Down’

For “Turtles All the Way Down” author John Green, life with obsessive compulsive disorder looks different from how it does on TV and in the movies.

“The first thing for me is that there’s a reason that the O comes first in obsessive compulsive disorder,” he said in an interview with Patrick McGrath, Ph.D., chief clinical officer of nOCD, which provides treatment for people with OCD. The conversation was first shared exclusively with TODAY.

“So much attention often goes to the compulsive behaviors, especially in film, because they’re very visual sometimes, and they can seem unusual to some people. But for me, at least, it begins with a lack of control over my thoughts, a sort of blizzard of thoughts.”

A desire to create a more nuanced understanding of people with OCD led him to write young adult novel “Turtles All the Way Down,” which has been made into a movie, released on Max on May 2.

“I’ve been very frustrated sometimes with the portrayal of OCD in the media, either seeing it romanticized as a disease that gives you secret superpowers, makes (you) brilliantly observational, like TV detectives,” Green said. “Or as a disease that’s highly stigmatized, that’s treated as freakish.”

What is ‘Turtles All the Way Down’ about?

The 2017 novel 'Turtles All the Way Down" by Green follows 16-year-old Aza as she navigates teenage life and rekindles a friendship with a childhood crush while grappling with OCD and anxiety. The movie version, directed by Hannah Marks, stars Isabela Merced as Aza.

“What we were trying to do is tell Aza’s story of living with OCD, but in a way that was realistic and, hopefully, resonates with people,” Green said.

Some of the things Aza confronts in the story mirror Green’s experiences with OCD, such as his wariness about trying exposure and response prevention therapy (ERP), a type of cognitive behavioral therapy aimed at helping people with OCD.

“I was definitely highly resistant to ERP when it was first presented,” he said. “It was important for us to include that in the film, both to include her reluctance to do it, her unwillingness, her quickness with which she says, ‘That’s not going to work to me. I’m not open to it,’ and then over time to come to a place where she is open to it, and she understands that it will be an important part of her journey.”

While some aspects of Aza’s journey are similar to Green’s, he also wanted her to be her own person with OCD.

“I felt very removed from all of it, almost depersonalized. But I did bring a lot of myself to her,” he said. “I changed some of the focuses of her obsessive fears just to kind of keep myself feeling safe.”

He felt it was important to show Aza having a rich life filled with both challenges and joys.

“I hoped in the story that we could get across that Aza is going to go through difficult times in her life, but she’s also going to have a good life,” he said.

Green hopes the movie will help people with OCD know their experiences are valid.

“I hope that they’ll feel seen, and most importantly not alone,” he said. “OCD can be very isolating, partly because we all tell ourselves stories that this is really really weird, really really strange. … I have often felt like, ‘Oh, nobody else thinks this way.’”

Living with OCD

Green shared that he has had OCD “for pretty much my whole conscious life.”

“When I was a teenager, I thought of what I was going through as just utterly unique and terrifying and disgusting and horrible,” he said.

Being diagnosed with OCD provided some measure of comfort.

“It was a big relief for me,” he said. “I had a name for it.”

Still, having a diagnosis was just part of Green’s journey. Much like Aza, he’s experienced many highs and lows.

“I also have a really good life, and I have periods where I’m quite sick, and I’ve had periods over the last 10 years where I was debilitatingly sick and where I wasn’t able to function,” he said. “That’s very frustrating. I don’t want to minimize how hard it is and how painful it is, and yet also I have a good life, and those things can co-exist.”

Even though Green admitted he felt unsure of ERP at first, he has participated it in, and it helps him to feel more prepared.

“There have been times when treatment has been very effective for me and times when it’s been less effective, but I’m in a good place right now because I have good tools that I learn through therapy and a good medication regimen that really works for me,” he says. “For the last few years, I’ve had periods of bad mental health, but I haven’t had periods of really intense OCD feelings, which is a nice change.”

Green said there’s “really intense pain of OCD.”

“When I’m really sick, I can’t read a menu let alone function in the world,” he says. “That affects my ability to be the dad I want to be, the husband I want to be. And ultimately for me, the biggest impetus to really aggressively pursue treatment is a feeling of, well, it’s not just about me. I have other people in my life I love who this is affecting.”

A few times, Green's children have seen him experience panic attacks, which have been “scary” for everyone, he said. But he feels he is in a much better place now than he has been in the past.

“(OCD) can find a new foothold in my life in different ways, but the comparison is night and day really,” he said. “If I think about periods when I’ve been at my sickest … forget about writing. I wasn’t able to be in the world. So much of my consciousness had been seeded over to these fears and to the compulsions that I would get out of bed knowing that a huge percentage of my day was going to be that, and I was just so scared all the time.”

Green knows OCD is “heavily stigmatized” but hopes that this narrative can change.

“This is pretty common and there are lots of people who live with really, really intense versions of this and still live good lives,” he said.

This article was originally published on TODAY.com