Not to brag, but I know Stephen Johns because he loved my book and got in touch with me (I never get tired of hearing from people, no matter how we happen to connect). And let me tell you, he has so much knowledge and insight to share about obsessive-compulsive disorder (OCD), he could write a book himself. He’s blogged quite a bit about his experience, and today he’s sharing his story with us! Thanks for being here, Stephen.
How long have you had OCD, and when did you start experiencing symptoms?
I can actually pinpoint the exact date I first experienced OCD symptoms: Saturday, March 9, 1991. I was 10 years old. My parents and I were driving from our hometown, Thunder Bay, Ontario, to Minneapolis to see a hockey game, and had stopped to get gas in a place called Grand Marais, Minnesota. I was feeling restless, so I went into the service station…and walked right into one of those old-fashioned (and, at least in Canada, now illegal) cigarette displays.
A thought popped into my head, as literally as anything’s ever popped into my head: “I want to smoke.” I felt as though I’d been punched in the stomach. The idea felt completely foreign. I knew I didn’t want to smoke…didn’t I? But the thought took hold, then metastasized. It reached a point where I couldn’t so much as even look at a cigarette—whether it was in someone’s mouth or butted out on the ground or even hidden inside a pack—without panicking. I thought about smoking from the moment I woke up till the moment I went to bed. This lasted five months, and then one day I told my mom about the unwanted thoughts. Her succinct response: “If you don’t want to smoke, you don’t have to.” That was all it took! The obsession went away. So did OCD, for that matter—for 15 years. I went through high school and university without experiencing a significant OCD spike. The closest I came was a well-known (and well-mocked) dislike for lower-case y’s, but that wasn’t debilitating so much as it was just plain odd. I also experienced anxiety over relationships, which, in retrospect, could have been OCD-related, but I think it had more to do with my main dating role models being the characters on Seinfeld.
Then, in 2006, I was living in Toronto and working my first “real” job out of university. I was forced to wear a shirt and tie, and for some reason this threw me into an existential crisis, which led to my second major OCD flare-up. It was my first encounter with harm OCD and the only time in my life where I felt as though I was genuinely losing my mind. I can still vividly recall the first time a harm thought popped into my brain. It was terrifying. The week that followed was torturous. I couldn’t sleep—but then couldn’t function at work, so I’d mainline coffee, which in turn exacerbated my insomnia and the suffocating anxiety. I couldn’t eat; half of what I ate I eventually threw up. I had no idea what was happening to me. But I knew it was bad, and I started looking for help.
When—or how—did you realize what you’d been experiencing could be OCD?
I didn’t get an official diagnosis till I was 31—21 years after my symptoms first presented themselves. Prior to that I’d seen a doctor who figured I had some sort of generalized anxiety; his succinct advice was, “You need to get out and run.” Later I got a similarly vague diagnosis from a psychosocial oncologist, which nonetheless contained three particularly useful nuggets of information: that I might have OCD; that OCD could be predicated on unwanted thoughts; and that incidents of childhood strep throat could predict OCD later in life. I’d had strep throat so often I can still practically taste the awful grape medicine. But the real eye-opener was the revelations that unwanted thoughts could constitute OCD.
I wouldn’t be formally diagnosed for another five years, but then I actually got two diagnoses for the price of one. I wasn’t chasing after multiple diagnoses in order to confirm their validity: they just happened to arrive within a month of one another. One was from a psychiatrist, the other from the psychologist with whom I’m still working.
Once you were diagnosed, how did you go about treating it?
Following that second, vague diagnosis I began taking antidepressants, which quieted the thoughts—but then I moved across the country, from Toronto to Calgary, and my symptoms stayed behind. I paid lip service to getting help for my OCD the following year but lacked the proper understanding of exposure and response prevention (ERP) therapy to following through (and I was asymptomatic, for that matter, which reduced my motivation). It took a third major flare-up, in 2012, for me to finally confront my OCD—and even then it took three months before I found the right person to treat me. (The third flare-up was my token encounter with homosexuality OCD—HOCD. Dr. Reid Wilson’s immortal line—“Content is trash—it’s trash!”—reverberates here because I actually met my future wife while I was having that spike.)
The first person I saw following that flare-up was a social worker masquerading as a psychologist. I knew within the first couple appointments that he wasn’t a proper fit—but I’d also read that OCD sufferers have a habit of running from perfectly good treatment providers, so I decided to stick with him. My resilience crumbled during the appointment in which I found myself lying face-down on his office couch while he ran a magnet up my back, claiming he was trying to synchronize the neurons (yes, this really happened). After that experience I went home, Googled “OCD specialist Calgary” and found Dr. Felicity Sapp. She and I have been working together ever since. Ironically, my symptoms worsened following our first meeting. I felt as though I needed more support than I was getting in Calgary, so I moved back to Toronto and back in with my parents for two months. In retrospect that might’ve been a compulsive decision—but those two months effectively reset my brain, which enabled me to tackle ERP head-on. I came back to Calgary, and my job, in much better shape. I treated ERP like a part-time job; indeed, whenever I’ve lapsed since then I’ve been able to dive right back into it, which has been a major factor to my treatment success. I’ve also tried hard (and, for the most part, successfully managed) to stay positive throughout my OCD journey. It’s easier said than done, but it’s been a critical factor. Pro tip: mirrors give great high-fives!
I’ve also focused on other treatment techniques as well, in particular sleep, exercise, and diet. I cannot stress the value of holistic recovery enough.
Do your friends and family know you have OCD, and how it manifests? If so, how did you go about telling them?
Everyone knows I have OCD. Few people know how it manifests beyond “bad thoughts,” and given the content of those thoughts is trash I don’t see much value in talking about it in too much detail. I’m an open book when it comes to mental health: I’ve been writing about my OCD for years, and from 2012 to 2016 I blogged for a Canadian organization called Partners for Mental Health. It never occurred to me that I should be ashamed of having OCD any more than I’m ashamed of having had cancer (I was diagnosed with, and subsequently treated for, a Wilm’s Tumour when I was three years old). The only negative response I’ve ever gotten was from a girl I briefly dated in 2012. Her reaction said a lot more about her than it did about me.
You travel pretty extensively for work. For some people with OCD, that could be a recipe for misery. How do you cope with or anticipate triggers while you’re on the road?
I travel semi-regularly, though not nearly as much as I used to (and thank goodness for that!). I genuinely love my job: twelve years into my career I still sometimes pinch myself because someone pays me to do what I do. That said, traveling for work isn’t usually glamorous: it’s frequently challenging and, like you said, sometimes a recipe for OCD misery. My symptoms tend to flare up whenever I’m on the road. I’m sensitive to the slightest variations in my sleep schedule, so getting on a plane and flying to Southeast Asia for six nights (like I did the other week) can wreak absolute havoc.
Having said that, I refuse to avoid travel, because it’s something I love and that I’ll be doing (whether in a professional or personal capacity) for the rest of my life. Ultimately, I’ve come to expect flare-ups whenever I travel, which mitigates their intensity. Then, once I’m out on the road I stick to my self-care regimen as much as possible. Sleep remains the key component, as well as the most challenging: our bodies simply weren’t designed for jet lag. (That Southeast Asia trip was brutal in that regard. I left Toronto late on a Tuesday and didn’t arrive in Indonesia till Thursday afternoon. In other words I spent two consecutive nights on airplanes—and no, I don’t fly business!) I eat as well as I can. I drink a lot of water (plus, inevitably, a lot of caffeine). And when symptoms do inevitably materialize, I try my best to remind myself that these trips are wonderful exposure opportunities. That’s easier said than done when you’re ravaged by jet lag, separated from your people, and getting slammed by intrusive thoughts—but it’s also critical, especially since I’m usually asymptomatic outside of travel. I need opportunities to practice my cognitive skills, and travel, for better or worse, provides them.
At the conference last summer you presented with your therapist. Did you ever imagine you’d go from the depths of OCD to sharing your coping skills and knowledge with a room full of people?
Are you kidding? Six years ago, when OCD had forced me into taking a leave of absence from work and moving back in with my parents, I’d have settled for the ability to drink coffee without turning into a puddle of nerves (“I could tell you what it takes to reach the highest high—you’d laugh and say, ‘Nothing’s that simple’,” as Pete Townshend put it). I just wanted my old life back; anything else would’ve been a bonus. As it turns out I did get my old life back—and then built a new, incredible life I never could’ve imagined from the depths of OCD despair. ERP is hard; indeed, you’ll sometimes hear it said that recovering from OCD is harder than having it in the first place. I don’t think that’s true: ERP is difficult, but it’s so worth it, and life in recovery is so much better than life with OCD. If you’re struggling, either with OCD in general or with ERP in particular, just know it’ll be worth every single ounce of effort. Progress isn’t always linear. Sometimes you’ll be feeling great; other times you’ll feel so awful you’ll think it was a mistake doing ERP in the first place. Keep pushing.
I’m not “cured.” One doesn’t cure their OCD: one learns to manage their symptoms so that OCD has minimal impact on their lives. I’m blessed to be at that point. Having the opportunity to tell a roomful of people that recovery from OCD is possible was incredible and beyond anything I could’ve anticipated back in 2012.
You recently weaned off your medication—with the guidance of a doctor—and are now focusing heavily on nutrition. What has that experience been like?
Firstly, I need to stress that I am not anti-medication. It helped me get better; I’d start taking it again tomorrow if it were necessary. Secondly, I realize not everyone has the luxury of taking on OCD without the aid of medication. I’m one of the lucky ones who’s at least been able to give it a go.
I’d been taking medication off and on since 2006; at one point I was taking a combination of an antidepressant, a benzodiazepine, and an antipsychotic, the latter of which was prescribed as a sleeping aid (which, in retrospect, was very cavalier of my former family doctor). I weaned off all three in late 2014, but eight months later went back on the antidepressant: I hadn’t been feeling “right” and decided that withdrawal was to blame. It wasn’t. I was traveling non-stop during those eight months; I took upwards of 40 flights, crossed an ocean on eight separate occasions and at one point went to China for a long weekend before flying across Canada 16 hours after getting home. I’m tired just reading that! But I conflated tiredness with low mood, which I then decided meant I had to be on antidepressants despite never having taken them as mood enhancers (I don’t have a comorbid mood disorder). So I went back on medication, then experienced almost four months of hellish side effects.
That experience typified my frequently fraught relationship with medication. I tried reducing my dosage last year, then ran up against a major trigger and wound up right back where I began. And I was fine with that—but then earlier this year, with my life in a relatively calm period, I decided to give it another go. I didn’t actually plan on going off medication completely: when I started tapering back in February I said I’d have been ecstatic if I could cut my dosage in half. But following the second dose reduction I decided to give it a shot. I took my last dose June 12, and so far things have gone much more smoothly than last time. I attribute much of that to my life circumstances. The last time I went off medication I was living on the other side of the country from, among other people, my partner and my parents. Now I live with my partner (who is now my wife) and 30 minutes from my parents. I’m traveling a lot less. Things are stable; things are good.
Diet has had a major impact. I’ve been working with a dietitian to create a good “mental health diet,” the pillars of which are lots of protein, lots of vegetables, and little to no processed sugar. Exercise has also been important. But the biggest factor has been sleep. In fact, if there’s been a magic bullet for my recovery in general it’s a commitment to proper sleep hygiene, in particular by giving myself a (relatively) non-negotiable 8-½ to 9 hours’ sleep opportunity every night and having a consistent sleep schedule seven days a week.
In a perfect world, everyone would already understand what OCD really is. But since we live in this world, what misconceptions do you wish we could clear up? How do you think we can go about doing that?
I wish more people knew that unwanted egodystonic thoughts can be symptoms of OCD. That involves education—and telling our stories fearlessly. I’m not actually bothered by people using the expression “I’m so OCD.” I can honestly count the number of times I’ve heard someone say it on one hand; I feel as though it exists more as an internet meme than anything else. Hopefully by talking about what OCD actually is I’ll implicitly discourage people from misusing the term. Language is certainly important when talking about mental health, but I’m not about to bite someone’s head off if they mistakenly refer to themselves as being “so OCD.”
If you could give just one piece of advice to others with OCD, what would it be?
Just one? How about five?
- Treat the disorder, not the symptoms. OCD wants to suck you into the specific content of your intrusive thoughts. But content is trash, as Dr. Reid Wilson puts it. Obsessive thoughts are symptoms of OCD. Trying to treat the symptoms instead of the disorder itself is akin to suppressing the physical act of sneezing when you have a cold.
- Welcome slips. I know it’s easier said than done, but slips allow you to put your cognitive skills to the test. You actually need them in order to solidify your gains. And on a similar note, don’t view the absence of symptoms as the primary indicator of treatment success. It’s nice, don’t get me wrong, but you can’t control the symptoms. You can control your response, however. Responding to your intrusive thoughts and resisting your compulsions are worth celebrating on their own.
- Work on your sleep hygiene. Sleep, to me, is the magic bullet; in fact, I’m at a stage in my recovery where having OCD symptoms usually means I just need to be sleeping more. One night’s sleep deprivation can activate our amygdala by as much as 60 percent, and given that the amygdala is responsible for sending the fight-or-flight response to our intrusive thoughts it stands to reason that a good night’s sleep can have a tremendous impact on our OCD. I give myself a relatively non-negotiable 8-½ to 9 hours of sleep opportunity every single night; I also stick to the same sleep schedule seven days a week. I cannot recommend Why We Sleep by Dr. Matthew Walker enough: it literally changed my life.
- Don’t become obsessive about your recovery. Find the sweet spot between caring too little and too much (and, well, don’t become obsessive about finding the sweet spot—settle for finding someplace in or around the sweet spot). Last year I became monomaniacal about my recovery, but my commitment to recovery eventually spilled over into obsessing about recovery. I kept an OCD journal for four months in which I documented, among other things, flare-ups, mood swings, exposure activities, and sleep patterns (I thought Dr. Sapp was going to kill me when she found out). Dr. Steven Phillipson’s article about choice in OCD treatment completely changed my perspective on the recovery process. It helped me discover the importance of caring the right amount—and the less I obsessed about my recovery, the better I got. On a similar note, research is a double-edged sword. Learn about OCD, but be careful not to read too much about the disorder, because research can very quickly become a compulsion. There are some great OCD books available, but I’d caution against building a library of them. If you do, and if you’re not using them in your recovery, put them away (or, better yet, have someone else put them away), because they’re often an endless source of reassurance for sufferers.
- Find the positives in having OCD. I know I lost at least a few of you just now, but before you go, hear me out! I believe—I truly believe—that having OCD has been a positive factor in my everyday life. This, obviously, isn’t something I could’ve said when I was at my lowest point, but now that I’m in recovery I’m able to see how it’s positively impacted me. It’s made me stronger than I could’ve possibly imagined. My symptoms suck, but they’re ultimately reflections of some incredibly deeply held values. Meanwhile, the brain that sometimes churns out this mental flotsam is the same brain that makes me, me. I’ve never understood the urge to externalize OCD. I have it, but it’s a small part of me. Would I give that up if it meant being a different person? Not on your life.
Alison Dotson 