Neil Hemmer is one of those old young people, already wise at 25. He’ll say something so poetic and profound it brings a tear to your eye and you suddenly feel less alone. And then he’ll tell a long story about pooping and the tears in your eyes are from laughing so hard. Like many of us with obsessive-compulsive disorder (OCD), Neil has been through a lot in a short time, and he has made it his mission to make the best of it and help others navigate the uncertainty and shame.
Thank you, Neil, for so passionately sharing your story.
Read on for poop stories! (And therapy, drinking to mask the pain, the OCD Conference, hugging, and more.)
Neil, I’ve heard you speak about your experience with OCD, and you always make me—and the whole room—laugh. You can make light of it now, but at the time your intrusive thoughts and compulsions were incredibly painful. Can you tell us about your first symptoms of OCD?
First and foremost, Miss Dotson, I wholeheartedly believe that’s unintentional. But you’re right, I joke around a lot about my OCD nowadays and when it all first began? Nothing was funny about it. I actually still don’t joke about the darkest times.
My very first symptoms? That feels like an eon ago but I’ll describe the weirdness as best I can. It all began when I was four or five; there was a terrible storm one day before I began kindergarten, a micro-burst, think mini-tornado. I have two older brothers and they were both stuck at our elementary school that had lost power so my mom had to take me with her to pick them up. There were big branches falling all around the car, the street was littered with blown-over trash cans, lightning was exploding across the sky, and the thunder was so loud I had to plug my ears. It truly felt like we wouldn’t make it home alive. For reference, my elementary school is a single street away from my house, like I can see it from my front yard. That three-minute car ride, though, to and from the school, a literal street away, changed the course of my entire life. My anxiety was born, boom, event-horizon, big-bang. I was so deathly afraid of storms from that moment on until about the end of eighth grade that anytime it was even cloudy out, I had to stay home because my OCD told me that if I weren’t there to protect my parents, they would die. I know what you’re thinking and yes, this makes no sense because I’m not Storm from the X-Men and have no way to prevent my parents from dying by spontaneous tornado. I didn’t realize this was a sign of OCD until late into my teen years, looking back on my childhood with vastly more knowledge about my disorder.
There were loads of other things throughout my childhood that I just kept silent about for years, because although I found them terrifying, agonizing, and confusing, I just thought everyone had weird nightmarish thoughts and wildly irrational fears. When you don’t know what’s going on, it all just seems normal. I mean, I guess it all just seems normal until it cripples your entire existence, but that didn’t come until much later for me. I thought everyone had disgusting sexual intrusive thoughts about their first through third grade Sunday school leader. I thought everyone worried about dying all the time and analyzed their body constantly for proof of signs of certain death. I thought everyone lived in a consistent state of fear that everyone on earth despises them for some unknown reason. You know? You know.
Do you find it helpful to joke around about OCD? And how do you feel about other people joking about OCD—what if they don’t understand what OCD really is?
I think it’s a really individual thing, having humor or joking around about your personal struggles. For me, it’s an incredibly healing practice to look back at all those traumatic times and almost make fun of myself. I’m a big believer in self-deprecating humor and never, ever taking myself too seriously. If people really don’t understand what OCD is and all the suffering it entails? I find them joking about it really minimizing, but I always use it as an opportunity for education and awareness. I know a lot of people who get really angry about ignorant joking and I think their feelings of rage are justified but for me personally, I have loads of other things to get enraged about. Besides, anytime someone has made an uneducated joke about OCD around me, which has been rare, being authentic about my experience, my pain, and educating them has been more productive for me than anger.
How long did it take for you to realize that what you’d been going through might be OCD, and how did you realize it?
That’s actually a really funny story because I wasn’t the one who recognized what I was doing at the time, compulsively washing my hands, was an obvious sign of OCD. All hail my eighth grade math teacher Ms./Mrs. Atkins and her mystical ability to correctly guess clinical diagnoses while handing back failed algebra exams. No, seriously, for real, that’s how that happened.
I think my physical symptoms really started ramping up sometime in sixth grade. I was just a lil tyke watching the news when a story came on about a bunch of people dying from E. coli poisoning. I had no idea what E. coli was, because, why would I? So I innocently asked my mom why a bunch of people were dying from eating lettuce and if I should be worried whenever I eat lettuce. She explained, really scientifically, what E. coli was and how it’s healthy bacteria that lives in our colons but it can be deadly if eaten, and told me the only way this can happen is if I eat poop or improper cleaning occurs and a cow had defecated on said improperly cleaned produce. My brain went, “Got it, if you poop anywhere near anyone else or if you don’t wash your hands well enough they’re going to f-ing die. Got it, kid?” I was paralyzed by a different kind of fear I had never felt before. Otherworldly, breath-stealing terror.
Fun Neil Hemmer factoid? I have never gone poop in my middle school. Sidetrack: I have literally thought of going back there to take a “victory poop” after conquering that episode, but my friends and I all decided that a 25-year-old man asking to randomly use a middle school bathroom probably wouldn’t be received so well.
I digress. That simple news story changed my life forever basically. From that instant on, and for the next three years, I washed my hands over five hundred times a day (seriously, my therapist made me count to get a ba——seline), showered three times a day, cleaned everything obsessively, and pretty much constantly lived in fear of killing everyone with my poop. No one thought it was OCD. My parents were obviously concerned and knew something was wrong but we basically lived in the dark for three years until one fateful day in eighth grade algebra. It was a life-defining moment that occurred in a matter of five seconds. I will literally never forget it. My teacher was passing back an exam and I had failed (horribly); she looked at my scarred, cracked, fire-red hands and said, verbatim, “Please come see me after school and we can go over the questions you got wrong on the exam. By the way, how often do you wash your hands? You know, you might want to see a counselor, I think you have OCD.”
Oh yeah, shoot, before the whole world gets mad that it happened this way and she kind of suggested it semi-publicly, we had an incredibly close relationship, she was (still is) one of my favorite teachers ever, and I credit her with saving years upon years of my life.
With that disclaimer, though, no joke. That’s what happened. In front of the entire classroom; it wasn’t private or anything, just “Hey man, your hands are real gross and messed up, you probably have OCD.” Within the next month I had my first appointment with a therapist and was diagnosed with OCD at thirteen.
Once you were diagnosed with OCD, how did you go about treating it?
By facing my worst fears over and over again in incredibly strange ways until all the spooky scary stuff wasn’t so spooky and scary anymore. That’s kind of a minimalist answer and there’s actually a lot of solid science that goes into that practice; it’s called exposure response prevention, or ERP. But in layman’s terms, it’s doing really spooky scary stuff over and over again until it ain’t so spooky and scary anymore.
People often think that after they’ve been through therapy and taken an effective medication they’re cured of OCD and should never have another upsetting thought again. What has your experience been like? Do you still have intrusive thoughts? Have you gone through what you’d consider a relapse?
I’ve gone through multiple relapses and I’m sure I’ll go through many more. In my experience, it’s been inevitable. As one of my dear friends Jess put it so long ago, “You gotta catch ’em all [subtypes], it’s like Pokémon.” I’ve “caught,” in order, harm OCD, medical- and health-related OCD, contamination OCD, religious scrupulosity, and relationship OCD, and I’m about to go into remission (fingers crossed) with an episode I’ve been wrestling with for quite a few years that I’d rather not broadcast to the world.
I still have intrusive thoughts on an almost daily basis. I’m not entirely sure what other fellow sufferers’ experiences have been like, but yeah, they’re just kind of a part of who I am. That’s the “magic” of ERP, though; if practiced for long enough, and often enough, those intrusive thoughts are really minimally distressing. My violent and sexual intrusive thoughts are no more distressing now than when, say, you’re driving on the highway and have a weird thought for a millisecond about driving off the road. I’d bet every single person reading this has weird intrusive thoughts from time to time, but they’re quickly able to just say, “Woah, that was weird,” and move on with their day. Same thing still happens to me; mine are just a lot more specific and a lot more graphic in nature. I consider them remnants of a battle that I won in what seems like an age ago. They’re mental scars from that battle and a not so gentle reminder of my resilience and the resilience of every sufferer.
In response to the first part of your question, I think it’d be an incredible disservice for me not to say this, and mark my words: OCD cannot be cured. I remember when my contamination OCD went into remission and I had two years of almost non-existent symptoms. It was—I can’t even put words to it—it was magical. It felt like I had just found a golden ticket to Willy Wonka’s chocolate factory or gotten my acceptance letter to Hogwarts. I felt peace, real peace, for the first time. The weight of the world had been lifted off my shoulders and it felt as though my demons had been banished permanently. But like all great conflicts, I had only won the battle, not the war. I vividly remember when I had my first religious intrusive thought, it was so jarring, so powerful, that I fell to my knees and just uncontrollably bawled my eyes out: It was back. I know, this seems heavy, and dark, but it’s the reality of this monster, and false hope is no hope at all.
One way you’ve coped with OCD is to drink, and eventually drinking became a problem. What would you say to someone who’s struggling with both OCD and addiction?
I told one of my mentors two-ish years back that I was struggling with my drinking and that I could tell it was getting worse because my OCD was getting worse and they were feeding upon one another. She said to me, “Neil, I know this may seem hard and scary to face but you need to face it and you need to get to the other side of this. The world needs you, Neil, people need you, and I promise you when you get to the other side [past my struggles with drinking] … it’s going to be so beautiful.” I didn’t really think much about what she said to me that night—it was certainly powerful and it etched itself deeply into my memory, but I didn’t really take stock of just how beautiful life could be sober. She was right; I’ve seen the other side and it sure is beautiful.
If I could really say all that I wanted to, to those suffering with both of these horrific afflictions, it’d take a novel series with twenty-four volumes. I’ll continue this eloquent rant with this: I can promise you, whoever is reading this, after an entire decade of trying to drown my own thoughts with whatever I could get my hands on, your thoughts can breathe underwater. I don’t think I was consciously trying to “drown” my thoughts and emotions for all of those years, but looking back, I know that was the goal.
I think the one thing I feel the need to highlight is that you really need to be authentically introspective and once you gaze into that deep, dark place and find that truthful answer, act on a solution. Don’t wait, because there are no shortages of “reasons to wait” or reasons that it’s “not an issue.” I knew long before I got residential treatment for both my OCD and substance use disorder this past March that I had an issue and that I was using alcohol in pretty much every way you’re warned not to use it. I put off my own health for years because I latched onto every glimpse of an excuse I could to ignore the truth I saw when I gazed inwardly.
I’ll end with this as I’m still processing my own journey with both of these beasts. Substance misuse or abuse of any kind is just a beautiful lie, guys and gals. That’s all it is and all it ever will be. It’ll promise you glamour, glory, popularity, existential fun, and a carefree lifestyle all while sinking its poisonous roots into the most sacred areas of your life and rotting them from the inside out. When you look in the mirror, you won’t recognize yourself anymore. I’ve ruined countless relationships, lost valuable friendships, and squandered life-changing opportunities by trying to drink away my pain. Your intrusive thoughts or compulsions, or whatever, may “vanish” for a fleeting moment, but I’ll tell you firsthand that the moment of silence you’re chasing isn’t worth the cost that alcohol exacts.
Every time I meet a young person with OCD I swear they tell me they met you at one of the OCD conferences and you took them under your wing. What do you love about the conference, and why do you take the time to make newcomers feel so welcome?
That’s actually really simple and I’ve been asked this question a strange amount of times. I know what it’s like to be terrified, uncomfortable, doe-eyed, on the verge of a panic attack, misunderstood—you name it. I know that experience, intimately, of feeling so small and so helpless. Just at the bottom of the deepest barrel in the lowest pit of hell and walking into that conference is your last-ditch effort, your Hail Mary pass, to find a molecule of hope.
Dr. Elizabeth McIngvale gave me that molecule of hope my very first conference; I’ll never forget her words. Actually, this is probably paraphrased because it’s been ten years, but it went something like, “I know this is hard, I know this is scary, but you have to find your reason to keep fighting, you have to keep fighting. For your family, for your friends, for yourself, for your future.” I immediately started inconsolably bawling my eyes out. I guess that’s why I do it, I try my best to make newcomers and everyone feel so welcome because everyone deserves hope. My worst enemy doesn’t deserve the hell that is this illness and if I can give even one person a molecule of hope, I’ve repaid the gift that was so freely given to me.
That also kind of answers why I love the conference in general, it’s chock-full of hope and understanding. It’s the people and the community that create the magic. I think for a lot of us regular attendees, it’s the one time of the year where we feel completely “normal.” It’s like Disneyland meets Hogwarts, Six Flags Great America, Candyland, and Atlantis plus every other fantastical whimsical place you can ever think of, all in one weekend. It’s home.
Neil, you’re a hugger. How have you been doing during quarantine? Do you have any advice on how to cope during this uncertain situation?
Well, I guess the big secret is out, yes, I am a massive fan of hugging. Everyone. Everything. Strangers, dogs, trees, friends, loved ones, honestly, anything that will let me hug it. So as you can imagine, quarantine has been rough. Luckily for me and unlucky for my mom, she’s off of work because of this pandemic and stuck at home with me all day, every day, so she gets a healthy average of eighteen embraces a day. I got my love of hugs from her, though, so she’s always up for it.
I think it’d be so disingenuous for me to go on some big wise rant about how well I’m doing or give some blanketed, vanilla advice about what you can all be doing during this incredibly uncertain time. I could go all social worker on you and list a bunch of healthy coping mechanisms I read in a textbook once but that wouldn’t be authentic of me. Let’s be real, I’ve been playing tons of video games, watching spooky movies, drinking eighty ounces of coffee a day, and eating a disgusting amount of white chocolate Reese’s Peanut Butter Cups. I’ve been incredibly low on motivation, energy, and serotonin. Doesn’t that just sound lovely?
Look, we’re in an unprecedented time of chaos and bewilderment. The planet hasn’t dealt with a pandemic of this proportion in over a century. Nobody truly knows what is going on and new information is being delivered haphazardly, daily. Thousands upon thousands of people are dying and every government, worldwide, is trying the absolute best they can to deal with this quickly and efficiently while trying to save as many lives as possible. Us layfolk are mostly all stuck at home wondering how we’re just going to survive this thing without having some sort of physical or psychological breakdown. One thing I’ve been struggling with is self-hatred and self-criticism: “Why aren’t you doing anything productive?” “You’ve got all the time in the world, do something fun and new.” “Why can’t you get motivated?” Yada, yada, yada, on and on, every day.
Here’s my advice to all of you and myself, be kind. That’s all. Be kind to yourself for making mistakes. Be kind to yourself for feeling down or having low motivation. Be kind to yourself when you’re feeling irritable or trapped. Be kind to your neighbors and your enemies. Be gentle, we’re so hard on ourselves all the time and this period, of all periods, is not the time to be extra hard on yourself. Give yourself grace courageously and without stipulation. Yeah, I guess that’s my only advice. It ain’t much, but it’s something.
If you could share just one piece of advice with others who have OCD, what would it be?
I don’t know if I have any more, advice, per se. The only thing that comes to mind is a quote by J.R.R. Tolkien, actually, the author of The Lord of the Rings: “Faithless is he that says farewell when the road darkens.” I guess I just want to say that I am, from the bottom of my soul, so deeply sorry that the only way out of this darkness is through. There’s no magical teleporter to get you to the other side of an episode and into remission, there’s no path around or an easy street that bypasses this seemingly endless dark forest. You have to be strong, and you have to look the monster in the face and tell it that you are its master, not the other way around. You have to keep pushing through and I have all the faith in the world that you will because if I can do it, anybody can.
While you’re pushing through, though? Get real weird with it. Take getting weird with it seriously; OCD is super weird and ERP is even weirder and goofier. I licked the inside of a dumpster one time as an exposure, how weird is that?