Vinay Krishnan has been vocal about spreading awareness of obsessive-compulsive disorder (OCD), and in a variety of ways: In 2018 he hosted an open-mic night at the OCD Conference, he’s written articles such as “What I Learned Watching LeBron James During My OCD Treatment,” and he’s on the IOCDF Diversity Advisory Council. Today he’s talking about the shame OCD causes, what it’s like to be a minority with a mental illness, and how to combat the negative effects of isolation, which so many of us are dealing with due to the outbreak of the COVID-19 virus. Please help me welcome Vinay!
How long have you had OCD? When did you first experience symptoms, and how long did it take for you to realize what you were going through might be OCD?
I can remember doing compulsions in my head when I was a little kid, but it wasn’t until I was 13 that symptoms really became debilitating and diagnosable, I’d say. And it’s never stopped since then. I didn’t figure out it was OCD until college because my symptoms are not the ones you typically see in popular depictions of the disorder. It wasn’t about hand-washing or neatness. It was about violence. It was about death. Things that don’t come up at parties. So I didn’t put it all together until years later.
I didn’t actually enter treatment until I was 24. So that’s 11 years without care. That would be unthinkable for a physical illness, right? If you broke your leg, you wouldn’t wait 11 years to see a doctor. If you had multiple sclerosis or lupus, you wouldn’t wait 11 years for treatment. But it’s a common story for people with mental illness. It’s the norm, actually. And it’s worse in minority communities.
I’m one of the lucky ones, though. I had resources for treatment. Many of my friends have known for years that they are ill, but they still can’t do anything about it because it’s so hard to afford mental healthcare in this country. We need new ways to access care. And it shouldn’t just be affordable. It should be free. A system like Medicare For All would fundamentally transform mental healthcare in this country. That’s what we all deserve, and I’m going to keep working toward it.
You wrote “What I Learned Watching LeBron James During My OCD Treatment” while you were in residential treatment for OCD. What inspired you to write about your experience?
That essay was a big deal for me because that’s the first time I ever spoke publicly about my illness. Before that, only my family and closest friends knew. But my residential treatment transformed me. I met people there doing the most courageous work in the strangest settings. Residential treatment for OCD is a bizarre, surreal, inspiring experience. Dozens of strangers directly confronting their biggest, most debilitating fears together in some small secluded ghost campus. One person might be resisting handwashing, another might be prompted to think they had just started a fire, another would be holding sharp objects in their hands, others would be reading scripts about sexual assault or pedophilia. And the through line is that everyone is filled with terror, until they’re not. It’s a big group of kind people who are all convinced the world is about to end. Until it doesn’t. And it never did. It was fascinating. I knew I had to tell that story.
I felt an obligation, really. These were the strongest people I’d ever met, but I knew they’d all discharge and go back to what they were doing before. They’d adapt and move on and survive as best they could in this country, but they likely wouldn’t be telling the story of our time together for a public audience. I knew I could, though. I knew I had the words. So it felt like it was my time to start speaking. If you can be the voice for a group of people like that, it’s an honor. It’s a thrill.
I told it through a sports lens because I wanted to reach as many people as possible, to get to the people who don’t already opt-in to mental health stories. I thought that was the best way to normalize those discussions and combat stigma. What better vehicle for that than sports? I didn’t want to just talk about illness. I wanted to use the illness as a springboard to talk about universal struggles. Worry. The fear of failure. Attachment. Loss. Things healthy and unhealthy people all struggle with.
What led you to residential treatment? How would you prepare a friend who was about to do the same?
I went because a weekly therapy session wasn’t enough to manage my illness. My condition was too severe. I was barely functioning, and I was a danger to myself. And again, I had the insurance to go. That’s privilege. Without that, residential treatment is a pipe dream. It’s science fiction. It’s just far too expensive if it’s not covered, and I was lucky enough to have coverage at the time. I’m glad I went. It completely transformed how I approach my mind. My condition is still just as severe, and I’ve been hospitalized again since then, but those nine weeks in treatment definitely gave me more tools to manage all this than I ever had before. It taught me skills that I employ now every day.
If someone I knew was about to go, I would tell them to prepare to do some of the hardest work of your life. Exposure therapy feels like torture at times. You and your treatment team are going to design personal little hells for you, and then you’re going to walk right through them. Every day. For four hours. It’s terrifying at first, but there are structures and supports in place to help you get through it, and you have your fellow patients to lean on. And it works. It’s revelatory when it starts working. I’d tell them the first weeks are the hardest, but by the end you won’t want to leave. I’d tell them you’ll make a family there. I’d tell them you’ll be part of a community of people who understand you, who just get it. And that’s a special thing. You have to do the work, though. Treat it like a job. Treat it like training for a marathon. If you put in the work, it’ll transform you.
Imagine I approach you and say I’d love to write about OCD myself but I’m worried about what people will think. What advice do you have for me?
That’s a tricky one, for anyone with an illness or a past that’s hard to talk about. We need more voices normalizing these discussions, but we don’t need more martyrs, and I would never ask someone to martyr themselves. Especially if they risk family or community shame or a loss of financial support or even violence. These situations are too complicated and specific for me to just say everyone should tell their story. I’m sure there are people who probably shouldn’t.
But I’d like to work toward creating a world where people do feel comfortable telling those stories. So if you’re in a position to do so without risking the consequences I described above, I would certainly encourage you to do so. The most meaningful writing I’ve ever done has been mental health writing. The most meaningful discussions I’ve ever had have been about disability and illness. About people doing whatever they can to survive in this world. Those connections are unlike any others.
I’ve certainly had lots of difficult conversations over the years about all this. With family members. With friends. With co-workers. People wishing I weren’t talking about it. But that was mostly early on, when I first started. It’s been normalized now in all my family and friend circles. We joke about it. We’re comfortable with it. That took years of work, but it’s transformative. And that’s what we’re trying to do on a bigger scale, on the biggest of scales.
I guess to answer your question directly, if someone asked me, I’d want to hear about their particular circumstances before advising them. But I hope everyone who can safely tell these stories can do so when they feel comfortable.
You’re a member of the IOCDF Diversity Advisory Council, and last November you wrote about the importance of welcoming minorities to spaces like the OCD Conference. You wrote about the 2017 conference, “Very few people in that crowd looked like me. Almost nobody did.” Why did you decide to join the council? Why does representation matter? In other words, why is it important to be able to look around a room and see others who look like you?
Those are big questions. I’d like to answer them by talking about shame. I consider OCD to be the shame illness. Everyone who lives with it is carrying an enormous level of shame with them. And that’s true for people living with anxiety and depression too. But when you have OCD, you’re forced from a very early age to confront the most essential aspects of your nature. Am I a good person? Can I be trusted? What am I capable of? These questions plague our minds. They consume us. You grow up thinking you’re a monster. And then 11 years later, a doctor tells you that you’re not. They tell you that you’re just sick. But you can’t unflip that switch, right? You still view yourself monstrously. As something defective.
This is all more pronounced in minority communities. We go longer without treatment. We face additional discrimination that “others” us. We’re often depicted in media as violent and untrustworthy. It all compounds the shame of the illness.
I think a crucial part of mental health advocacy is decreasing that shame for people. It’s essential. A big part of that is seeing yourself in the person next to you. It’s feeling comfortable in a crowd. It’s telling stories. Minorities are especially vulnerable to the shame and stigma that makes mental illness so much more difficult to deal with. I joined the Council because I thought I could help change that through my writing. So I wrote that essay. And I hope that helped some readers work through their shame.
How can organizations and individuals be more inclusive without resorting to tokenism? How can they increase diversity in a meaningful way, helping minorities feel truly represented and included, and not just checking off a box?
I think there are really two distinct issues in there. The first is what I talked about in the last answer. The shame and stigma. The interpersonal benefits of being more inclusive. That’s a meaningful goal, and it helps people seek treatment. It’s worth pursuing. But there are also structural goals, right? Racism isn’t people being mean to other people. It’s structures and systems. It’s institutional. It’s violence coming directly from the state. There are entrenched reasons minorities face greater barriers to mental health care in this country. That’s not something we can combat through tokenism.
To be honest, I don’t think the IOCDF is really combating it at all at the moment. If I had my way, we’d be meeting directly with representatives on legislation. We’d be protesting. We’d be engaging in civil disobedience. I think if organizations really want greater access to care for their members, they need to throw down. Or they need to partner and fund people who are throwing down. We need to demand the healthcare we deserve. So that’s not about putting a few extra brown people in a room. It’s about ripping out the ableist roots of America’s healthcare system. That’s a bigger challenge, and we’re not really doing that.
How have you been managing anxiety and daily life with the near-constant news about COVID-19?
It’s been difficult. I actually spent eight days in a psychiatric treatment center recently for depression and suicidal ideation and discharged just as people were beginning to isolate themselves, so transitioning from one to the other definitely took a toll. Typically they don’t recommend you isolate for months during a global pandemic after you leave hospitals for depression. That’s not—that’s not Best Practices. I definitely feel for everyone trying to manage their depression through COVID isolation. That’s a tall task.
The main thing I’ve been doing to stay stable is calling people. I try to have a video call with someone almost every night, often with big groups of people. My mind does awful things to itself when it’s left alone, so finding ways to stay social has been key. I especially try to check in on my friends with depression. Community care is so important right now. There’s a great tradition of it in disabled communities, and I see it now becoming really innovative. People with disabilities are at such heightened risk in this new world, and we all need to create care webs and create new ways of interacting to keep each other going. This is a time to be building community.
I also think this whole situation really illuminates a lot about what it means to be disabled in America. For starters, it simulates for healthy people what it’s like to have an anxiety disorder. My anxiety hasn’t actually changed much at all because I’m always seeing this stuff in my head anyway. People with our illness always think the world is about to end, so we’re oddly kind of prepared for this. But I hope this all gives healthier people an appreciation for what living with constant fear is like. It also illuminates how far-reaching but ultimately unnecessary ableism is. All those unreasonable workplace accommodations we’ve been demanding for years are suddenly reasonable now that abled people need them. The world we were asking for was always possible. It was just withheld. So I hope we all focus on taking care of each other for now, but afterwards, we really need to have a reckoning.
If you could share just one piece of advice with others who have OCD, what would it be?
My main piece of advice to everyone with this illness is to remember that you always have a choice. The scariest part of OCD is that it makes you feel like you don’t have free will. You feel like you’re not in control of your actions. Like a malfunctioning robot or a train on the wrong tracks. You feel inhuman, mechanical. But none of those things are true. You do have a choice. It just feels like an impossible choice. If OCD tells you that you have to flip a light switch 30 times or your brother is going to die, of course you’re going to flip that light switch. But you don’t actually have to. There’s always another way. You can choose not to engage in that compulsion. Your anxiety will rise and that voice inside your head will scream at you that your brother is in danger, but you can persist. You can go on. You can do something you value with your time instead. That’s how you get through all this. You walk toward what you fear, not away from it.
My advice to everyone living with this illness is that you’re human. You have free will. You have choice. OCD cannot take that away from you. Depression cannot take that away from you. Being suicidal cannot take that away from you. You’re the one at the controls. You can do what you value. What you truly want to do. Every single time.
Alison Dotson 
Good interview 🙂