Allison Dotson suffered from Obsessive Compulsive Disorder for nearly two decades and understands that the disorder is crippling. Since her recovery, she is active in providing helpful resources to those who also suffered from this illness and her website is a plethora of resources that will help anyone to turn the tables on OCD.
Happy Tuesday! Today we’re hearing from Anna Wetrosky, who’s graciously shared her experience with multiple diagnoses and residential treatment for obsessive-compulsive disorder (OCD) and anorexia. Anna is a generous volunteer with a local nonprofit and a strong person with a lot of insight to offer. Thank you, Anna!
How long have you had OCD? And how long did you experience symptoms before you were diagnosed?
I’ve had some symptoms for as long as I can remember—they weren’t anything obvious when I was younger unless you were a specialist probably. I was diagnosed with an anorexia when I was 12 years old, but that wasn’t considered an off-shoot of OCD in 1997. I received an actual diagnosis in 2000.
Once you were diagnosed, how did you go about treating it?
I was diagnosed after being hospitalized, so I had 24/7 care for two weeks when I was 15. Then I was moved to outpatient once a week, then once every two weeks until I was 18. I went back into outpatient therapy a few years later in college and have been in more inpatient, partial programs, and outpatient during various times since then.
You went through residential treatment at Rogers Behavioral Health in Wisconsin. Why did you decide to commit to that level of treatment?
I researched centers and contacted Rogers after I had been in multiple treatments for seven years without the success in lowering my OCD symptoms that I was looking for. I hadn’t received much information on proven treatments for OCD even though I had been diagnosed with it years before. I had been bounced around in general treatments and was feeling frustrated and angry. My age and growing independence were factors in making a big change without the okay of anyone else.
Tell us what a typical day was like at Rogers.
I was there about ten years ago, so things may be different now. The staff woke people up to get their medications before breakfast if you took them along with your weight and vitals. You might not get weight and vitals taken in a non-eating-disorder track, I’m not sure. After that was a buffet-style breakfast. Some people had different dietary requirements. Your exposures happen all throughout the day and vary depending on your specific fears and hierarchy. One of my exposures was to eat varying amounts of my food—between 75 and 100 percent. I struggled with wanting to eat nothing or “having” to eat a certain amount. Everyone in my house also had at least one exposure dealing with food. After that was morning hygiene. I had trouble brushing my teeth in a reasonable amount of time, so I would time myself—not brushing my teeth for more than two minutes.
Then we sat in a group with our therapists and other clients and checked in with how our exposures were going. We carried around small black books with our symptoms and checked about how many times we did them during the day. This was also dedicated time to practice our specific exposures and rate them as our anxiety went up and down—there are staff members present during this time who can be helpful for support. I had exposures to do on the internet surrounding Facebook, using the phone, and in general conversing with people in different ways. Everyone had certain staff members that they got along with well or didn’t like to be around—that was something I didn’t like because of my avoidance surrounding interpersonal issues.
Lunch was similar to breakfast, and then we did something cognitive restructuring and thought challenging. I had a pretty constant thought (still do sometimes) of “everyone hates me.” I challenged with labeling it as mind-reading, listing the reasons that led to me thinking it was true, then writing only the things I knew to be accurate.
Experiential therapy in the afternoon was usually an outing for clients who had the okay from their therapist to do exposures and practice outside of the center. One day we went to the mall where I practiced trying on clothes and making small purchases (something I had avoided more and more over the years). Other outings went to Hobby Lobby and the local library. Making clients behave outside was a challenge for the therapists—don’t waste your time trying to bend the rules with the cool kids. You’re paying to be in treatment!
Supervised assignment work happened in the afternoon. Since every person has a different background, we worked on some of the same things but also had individualized goals. A friend of mine had experienced sexual trauma, so her assignment was to write down what happened to her since she could barely talk about it. As she became more comfortable, she told her therapist and courageously eventually read the story to the entire group.
Since I was in a house that worked with eating disorders along with any other OCD issues, we sometimes split up for meals as we progressed in our treatment. Toward the end of my stay I ate dinner in the hospital cafeteria (all by myself!). Not having to be watched while you eat is pretty exciting when you’ve been in eating disorder treatment for months. Once you progress in your treatment if you are working on an eating disorder, you also get to go out to eat with a few people, yourself, or your therapist.
After dinner we would all get together to review our goals, then have some more supervised assignment work where we’d spread out around the building if we wanted. Finally, we had a short group activity or took care of chores, laundry, and so on. Weekends were more lax with more free time. We spent a lot of time sharing music (pirating also—which is funny to think about now) and talking about our lives. Someone had a guitar, so we’d play that—someone else had a board game. There are TVs to watch movies, cable, and computers to use the internet. It’s like jail, but a lot better.
How did you adjust to daily life after residential treatment? Did you experience any hiccups without 24/7 access to care?
I had a little different experience after leaving. It was recommended I go to another inpatient program since I couldn’t do the partial program at Rogers (I was still having suicidal thoughts at that time). I honestly don’t know what the reasoning for that was, but that was what happened. The hardest thing for me to deal with when getting out of residential treatment was dealing with relationships issues. I’ve always had the hardest time dealing with those, so not having someone to talk to right away when starting out was hard. But it is also freeing, because you can get really sick of constantly being monitored.
You have also been diagnosed with an eating disorder, bipolar disorder, and borderline personality disorder. Has treatment for one disorder informed how you approach another? What challenges do co-morbid diagnoses present?
I haven’t changed anything in particular regarding treatment due to one disorder, but they have influenced each other subconsciously for better or worse. When I try to eat well to deal with the eating disorder, that raises my anxiety and can lead to more borderline and OCD symptoms. It can also help, because eating regularly is better for blood sugar and helps with depressive swings. There are general things I try to follow that helps everything—getting enough sleep, eating well, and exercising that typically apply all around.
You volunteer with OCD Twin Cities. Why did you decide to give back in this way?
I decided to volunteer because I had been through enough treatment that I felt I had extra knowledge that wasn’t necessarily being used by me. It was also a good chance to meet people and get involved. There is something satisfying about hoping what what you’ve learned from your negative experiences could help others not make the same mistakes.
If you could give just one piece of advice to others with OCD, what would it be?
Probably to remember that there’s no silver bullet. As shiny as that idea can be it’s just not realistic in 99 percent or more of cases. People who aren’t diagnosed with psychiatric disorders fall into this trap all the time as we can see—just look at the diet industry. In a way it seems more overwhelming that there’s no silver bullet—so many things to think about. You may have to start small and take one step at a time if necessary.
I know this is two things, but continuing exposure therapy on my own has been insanely helpful. It’s so easy to get out of treatment and be like, “Okay, I’m better now. Don’t have to think about that stuff anymore.” But again, unfortunately, for 99+ percent of people your OCD/other disorder won’t go away. It will just need to be managed. I had to use some exposure therapy to write these answers—I honestly avoided it for two months, as Alison can attest to, even though I was glad to share my experience. But finally I had to sit down, start an Excel spreadsheet, start setting goals and rating my anxiety as I went along. Here I am doing similar exposures around social media and putting myself in the spotlight ten years later. But it’s done, so go me!
I first hosted Jon Hershfield in a Tuesday Q&A in 2015 and he’s done so much since then it’s time to have him back! With four books under his belt, he puts authors like me to shame, so I don’t know why I’m continuing to promote him. But, really, he has a wealth of practical advice to offer and always does so with humor and compassion. We’re lucky to have him in the OCD community.
A lot has happened since we last chatted! You may be the most ambitious person I know: You just published your fourth book, Overcoming Harm OCD. One of the most common questions I hear about harm-related intrusive thoughts is “How will ERP work for me? It’s not like I can walk around with a sharp knife.” How would you answer that question as a therapist?
Well, you can literally walk around with a sharp knife. Normally we do this when we’re on our way to divide a sandwich. But the question has to do with concern about causing actual harm in the course of doing exposure to a fear of causing harm. In ERP we do a lot of scary things, but what we don’t do is actually hurt people. In OCD there’s been some problematic training of the brain to assign “danger” to uncertainty about harm thoughts. So if I see a knife and I have an intrusive thought of causing harm with it, my brain may believe we are in danger. ERP works by getting in the ring with that uncertainty, resisting compulsions and other safety behaviors, and retraining the brain to have a different association with the uncertainty. So actually, yeah, handling a sharp knife in the presence of unwanted thoughts and other triggers can be really good ERP. I think it’s easy to get confused here because one might think we don’t have people stab strangers as exposure simply because it’s wrong. It is wrong, but that’s not really why we don’t do it. We don’t do it because that would fail to actually teach the brain how to handle uncertainty. For exposures where handling a knife may be complicated (e.g., you can’t bring one on an airplane), we have imaginal exposure where we use writing as a strategy to trick the brain into thinking we could be in danger. In this state, we practice resisting compulsions and we create new learning about being uncertain. People with harm OCD are not the ticking time bombs they think they are, but no amount of me telling them this will actually touch the OCD. They have to experience the exposure without the compulsions to truly understand this.
We know that getting the right diagnosis and proper treatment can take years, and I’ve always wondered if it takes longer for folks with harm obsessions. When I was worried I’d hurt a child, I was afraid to tell anyone, even a therapist, because I thought they’d deem me a risk to society and call the police. In your experience, are individuals with harm obsessions less likely to seek help than those with, say, a germ phobia? Or is their fear that they’ll hurt somebody so strong they feel they must be stopped before it’s too late?
Both of these things are very common in unwanted violent obsessions. A person with harm OCD may avoid treatment because of the concern that the treatment provider will have them hospitalized or arrested, or that disclosure of these thoughts will bring shame and scorn to them and their families. In more severe cases, anxiety can be so high and insight so low that a belief develops in the mind of the person with OCD that they must be defective at the core. Essentially, they imagine that going to treatment will reveal this defect and the borrowed time they’re living with before hurting someone will come to a sudden end. We can largely blame external stigma about mental health issues, especially as it relates to intrusive thoughts, for inhibiting people from seeking help. But self-stigma is even more powerful and the belief that having these thoughts makes us immoral or bad keeps a lot of people from asking for help.
We know reassurance seeking is a compulsion, and giving reassurance only adds roadblocks to the recovery process, so what is the best way to help a loved one with these upsetting intrusive thoughts?
Loved ones can educate themselves about the disorder. Knowing your loved one without OCD understands that you have OCD is reassuring in the best possible way. If the sufferer and the family member (or partner, etc.) can work together with compassion and an educated understanding of the disorder, navigating reassurance becomes easier. Collaborating on non-reassuring, but compassionate, responses makes a huge difference. So rather than constantly telling a person with harm OCD that they’ll never hurt anyone, they can find appropriate ways of telling them that they understand OCD is really painful, that they are proud of and support the work that’s being done to overcome it, and that there are several shows on Netflix right now that demand more attention than the question on the table at the moment. Of course, none of this type of interaction is possible without empathy and kindness. Helping them access treatment when possible, supporting that treatment, and never confusing the symptoms with who the person really is are all instrumental.
Speaking of not giving in to compulsions, let’s talk about your book When a Family Member Has OCD. It must be hard for parents to resist the urge to act as a therapist themselves, and to instead support their child through the recovery process. What would you tell a parent who is at his wit’s end and just wants to make life easier for his child, even if that means doing the “wrong” thing?
In writing When a Family Member Has OCD, I really kept in mind two audiences: one is the family member who wants to better understand a loved one with OCD and the other is the OCD sufferer who wants to be understood. Families operate as systems. There is no such thing as a child with OCD that exists in a vacuum where the child just gets fixed by the therapist and life goes back to normal. A child with OCD does hard work with CBT/ERP to master the disorder. The parent of that child must also be willing to do exposure to their own fear that they aren’t doing enough to relieve their child’s suffering. It’s excruciating, but when parents sabotage the treatment by providing reassurance and accommodating rituals, they just set the stage for more pain for everyone later. Reassurance actually doesn’t make life easier for the child because it sends the message to the child’s brain that there was something dangerous to reassure about and that they could not have coped without your intervention. Confronting the discomfort over withholding reassurance means sitting with uncertainty about how much pain you and your child can withstand in the face of OCD. It’s not easy. But parents who overcome this fear get a better understanding of what it’s like for their child to overcome fear and when the child improves, the parent’s relationship to anxiety changes too, and the whole system improves.
You co-authored Everyday Mindfulness for OCD with Shala Nicely, an inspiring read about how to enhance ERP with mindfulness techniques. I’ll admit that I always thought sitting in silence with my horrific thoughts felt a little like torture—and many people can’t believe we’re supposed to accept those thoughts.
It’s an interesting way we often put it—“to sit in silence with horrific thoughts.” There are some inherent problems in framing it this way. First, it implies that in the absence of distraction, it’s just the self and the thoughts alone in space. But this isn’t true. In the absence of distraction, we see things as they really are, which includes input from all five senses and, yes, thoughts. So it’s really being in the company of six streams of information and treating them all as such. Sound, touch, thoughts, and so on are all just objects of attention being projected onto the screen of the mind, so if we learn how to pay attention, there’s a lot more to look at than just sitting with obsessions. This highlights the other problem, that word “horrific.” We get so used to categorizing thoughts like movie genres that we easily forget how thoughts are just words and pictures. They don’t really have positive or negative qualities unless we decide that they do. Yes, the thought of harming my children abhors me. But if I write “harming my children” in red marker on a piece of paper, the only thing that’s changed about the paper is that it has red ink on it. The same is true of us. When we think a thought, the thought is just words scribbled on the mind. It doesn’t change who we are.
Tell us how mindfulness can help, and explain why it’s a myth that meditation means completely clearing our minds of all thoughts.
Two problems occur in the way the OCD mind operates that can both be addressed with mindfulness, which simply means watching the mind objectively. First, the mind wanders from the present, as it should, no different than a puppy sniffing things on a walk around the block. But we often fail to notice that it’s wandered and then, in a way, we find the puppy pooping on the neighbor’s porch. In other words, we get lost in our obsessive thoughts because we have trouble paying attention to where the mind is in any given moment. Then, when we discover that we’ve been pulled away by an obsession, the disorder sets a precondition for returning to the present. We feel obliged to neutralize the obsession (i.e., get certainty that it isn’t true), to do a compulsion, and then we get permission to return to wherever we were before we got distracted. If, on the other hand, we had the capacity to notice early on when the mind has been pulled away by an obsession and could simply start over in that moment as if it never happened, without permission from the OCD, we’d be much more in command. Meditation is an exercise that targets these two strengths, of recognizing where the mind is in each moment, and starting over when we see the mind distracted. By definition, this requires the mind to not be clear, but to see it clearly. Have all the thoughts, but know that they are thoughts and don’t try to fix them.
What’s next for you?
It’s been brought to my attention that I’ve written four books in the past five years or so. I’m hoping that Overcoming Harm OCD helps more than just the kind, gentle, and creative people I’ve encountered in my clinical work, but harm OCD sufferers everywhere. I also hope it serves as an excuse for me to slow down before I find myself writing something about sexual obsessions. So what’s really “next” for me is just continuing to build my practice and doing the best I can to help empower the most people in their OCD recovery.
Leah Adair is a delight! I’m lucky enough to know her, and today you get to know more about her and her journey with obsessive-compulsive disorder (OCD). Leah is full of positivity and insight and realizes that even with the torture that OCD has caused in her life she still has plenty to be thankful for. Thank you for being here, Leah!
When did you first experience symptoms of OCD, and how did you eventually realize what you’d been experiencing might be OCD?
I didn’t fully understand OCD until it upended my life five years ago. Prior to this time, I had symptoms, but they were manageable. As a child, I often apologized over and over and over again for things that weren’t even my fault. I had worries that I said something blasphemous to someone during a conversation. I would rerun conversations over and over in my head after talking with someone. I also had extremely inappropriate words get stuck on a mental loop in my head. Neither of these obsessions took a major toll on my life. I just chalked them up to being weird thoughts.
In the fall of 2010 I was hospitalized in the ICU with double pneumonia. I was on life support at the age of 28. It was a very scary time for my entire family. My parents are both medical professionals and they knew how dire this situation was. As I’ve done more research on OCD, I believe there could be a link to major medical experiences and OCD in some people. I had frequent ear infections as a child and ended up with tubes in both ears as well. Both of these major illnesses could have had an impact on my brain chemistry. Who knows—OCD also runs in families. My brother has it and I know of a few extended family members with an OCD diagnosis.
Five years ago I was in the throes of parent-teacher conferences, we were hosting some out-of-town guests, and we were getting ready to go out of state for the weekend. I was going about my day-to-day life when a thought popped into my head. Most people would just let a thought like this pass on by. My brain got stuck in this thought. It cycled through my brain nonstop. I couldn’t turn it off. Everywhere I looked, my obsession seemed to be there. It was torture. I couldn’t sleep for several months. I’d average three hours of sleep per night. I was barely able to eat and in a span of four months I lost over 30 pounds. This isn’t a diet I would recommend to anyone. I was tormented by this thought (obsession), and my compulsion was to ask for reassurance via my parents and the internet—I was constantly searching the internet to figure this out. I didn’t know it was OCD until I ran across an article about different forms of this illness. I always equated OCD with order and cleanliness. I’m someone who wants solutions to most everything. I scheduled an appointment with a therapist, started researching all of the natural remedies for OCD/anxiety, and dove into an intense workout regimen (thinking the endorphins would kick this nasty beast to the curb). The therapist I originally went to had no idea how to treat OCD. I also visited a psychiatrist and she basically just wrote me a prescription and said “good luck.” As I continued to scour the internet, I found a blog by Jackie Lea Sommers. Little did I know, she lives in the Twin Cities as well. She has a whole section of her blog dedicated to OCD. It was from interactions with her that I found out about exposure and response prevention (ERP) therapy. I went to Dr. Chris Donahue in Saint Paul for 15 weeks of ERP therapy. It was hard and intense, but I can now say my symptoms have improved by 85 percent. I’ve acknowledged that OCD is something that will never completely go away. When an individual has diabetes, they have to manage their insulin. If a person is in remission from cancer, they still need to go in for check-ups and have an awareness of their body. I view ERP as the tool box that helps me function. I also credit an amazing community of friends, a supportive and loving family, exercise, and medication.
Will you share your “stickiest” obsession with us? Did you have to approach it from a different perspective, or has a tried-and-true method helped?
Gah. Here I am thinking I’ve come so far . . . but I’m still afraid to share my stickiest obsession with the internet. OCD is so tricky. It’s like watching the worst movie you’ve ever experienced over and over and over again.
The website Beyond the Doubt has a short summary of different themes people have.
The main themes that have been present in my life are:
“just right” OCD—making sure I said or did something just right, and if I didn’t I replay the conversation or interaction over and over and over in my head
thinking I’ve said something blasphemous out loud, asking people for reassurance to find out if I actually did say something
fear of harming a loved one, but knowing I would never hurt anyone (harm OCD)
sexual obsessions—my entire life I’ve been attracted to boys and then men, but fearing that I’m living a lie (homosexual OCD)
Having OCD is difficult for anyone, but it can be particularly painful as a parent. You’re a new mother–how have you dealt with obsessions and compulsions while adjusting to a whole new lifestyle and set of responsibilities?
I was very open with family and friends prior to having our son. I wanted them to know I was afraid of how this disorder could manifest as a mom. Thankfully, it hasn’t been bad. During pregnancy my symptoms actually subsided quite a bit. As a mom, things are so busy that I don’t have as much time to give to my obsessions. Parenting is hard, but it’s also been a great distraction. Once in a while I will get “stuck” but thankfully I am able to tell my husband or a close friend that I’m having a difficult time. I also have recognized when I need to have alone time, or do something to recharge. I’ve found that I get really exhausted in large groups where I don’t know a lot of people.
Speaking of family, how did you tell loved ones about your diagnosis and how they can help you?
When OCD first presented itself, I contacted my brother. I think he was diagnosed in high school or college. He was super helpful and encouraging. It also helped to know that I wasn’t alone. After telling my brother, I told my parents. It took me a few months to talk to my husband about it. I think a big thing I was afraid of telling him was that part of the OCD theme I struggle with had to do with him. Over the course of the year when I was diagnosed, I gradually began telling close friends. Then, one night a few years ago, I wrote a post about OCD. It was extremely liberating. It felt like I broke free of chains that were holding me back. Prior to this disorder wreaking havoc on my life, I had so many stereotypes and stigmas of people with mental health issues. I wanted society to know and understand that it could happen to anyone. Family and friends have been wonderful. It’s been beautiful to see awareness spread about this illness and to have people love me through it. My husband, Thom, has been amazing. He’s so calm and loving. I don’t expect him to ever fully understand OCD, but I’m glad he loves me through it. I thank God every day for the support system I have.
You’re the OCD Twin Cities secretary. Why did you want to get involved in a nonprofit dedicated to OCD awareness in your city?
I felt like I needed to give back to the OCD community. I also have a strong passion for mental health awareness. The late Senator Paul Wellstone said, “We all do better when we all do better.” I believe this is true. We need each other to survive. No one is meant to fight alone. Your story isn’t fully written, and it’s definitely not over. I’ve loved getting to know the other individuals on the OCD Twin Cities board and helping create events and awareness about OCD. It’s so important for family and friends to have ways to support their loved ones as they navigate this diagnosis. I feel like OCD Twin Cities has events for everyone, whether you’re a mental health practitioner, an individual with OCD, a partner, a friend, or a family member.
I’m someone who cares deeply about others and I love helping people find ways to manage their symptoms. OCD can feel really isolating at times, and I want individuals suffering with the illness to know recovery is possible.
What do you consider the most harmful misconception about OCD, and how do you think we can help clear it up?
I think the most harmful misconception is that OCD is such an asset. I had a health provider during a physical say to me, “Your house must be so clean since you have OCD!” I didn’t have the energy to explain to her that my OCD symptoms have nothing to do with cleanliness. I think ways we can clear up misconceptions of any kind is to stop dehumanizing people. It’s so easy to make stories up about people and be fearful of mental illness. One in four people have OCD. It’s as common as childhood diabetes. Your friend, neighbor, pastor, barber, taxi driver, or family member could have OCD. It’s not something that is visible to people. It’s often something that individuals suffer with in silence. I hope and pray that our society continues to create more understanding around all mental health disorders.
If you could share just one piece of advice with other with OCD, what would it be?
The piece of advice I would share is: You’ve survived 100 percent of your hardest days; don’t be afraid to get help or admit you are not okay. A whole community is out there waiting to embrace you with loving arms.
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, travelling 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..
Happy Tuesday! If you’ve been reading this series for a while, you won’t be surprised by how I met today’s guest, Justin: At the OCD conference! This past summer I presented about the shame and guilt caused by taboo intrusive thoughts, and Justin was in the front row. We chatted afterward, and he said he wanted to share his personal experience with obsessive-compulsive disorder (OCD). And here we are!
When were you diagnosed with OCD, and how did you know where to turn for help?
I was diagnosed at age 26, but I can probably trace symptoms back to age 6 or 7. That’s about 20 years of silently struggling. Unfortunately my story isn’t uncommon, as you typically see statistics anywhere from 9 to 17 years from onset of symptoms to appropriate diagnosis.
Because I fused with my thoughts so intensely, I just thought okay, this is how life is, how I am. Life always felt off and full of struggle, but I didn’t know there was something fundamentally wrong with how my brain processed external information. Needless to say, an official diagnosis was accompanied by much relief (along with confusion, anxiety, excitement, and an eclectic mixture of other emotions).
My parents do not have a keen awareness of mental health issues, and never thought anything was wrong. In their defense, I concealed much of my turmoil internally due to shame and in an effort to appear perfect to the world. There was one period of my adolescence when I started to demonstrate violent physical compulsions related to obsessions of mine, but we didn’t know what it was. My mom finally agreed to take me to a local therapist who did a lot of talk therapy with me, tested me for attention-deficit/hyperactivity disorder (ADHD)—test results came back negative, but I guess we stopped there—and referred me to a psychiatrist who gave me medication and hypnosis. The combination of treatment “worked” in the sense that my physical compulsions stopped—but little did I know all they did was morph into mental compulsions. Because I was unaware that what I was doing in my head was exacerbating my condition, the disorder continued to dominate and ultimately snowball out of control.
I continued to seek out different therapists along my journey. Unfortunately, all missed the diagnosis. We did a ton of talking and analyzing, which I now understand only made things worse. What we needed to do was less talking and more exposure. All of the analyzing only kept me in a compulsive rumination cycle.
Oddly enough, along the way I would develop small periods where I’d do research and think to myself that maybe I have obsessive-compulsive disorder (OCD). Unfortunately, the nature of the disorder is such that I even doubted I had OCD because I didn’t have the “classic” OCD symptoms portrayed in the media. So I never truly pursued recovery. I was always in school and continued to pour my energy and time into that and other interests of mine. They all became compulsive—I became a compulsive student, compulsive bodybuilder, compulsive friend, compulsive man of productivity, compulsive “busy” person.
I poured into worldly activities to distract my mind from incessant strife. In reality, everything acted as a bandage to help me get through the years. If I could go back, of course I would stop school for a year and get the help I needed so I could live more effectively, but this is how it was supposed to be for reasons I’ll probably never understand. I’m grateful for entering recovery when I did, and am committed to a life of management from here on out.
It’s nothing short of tragic that the public is so misinformed about this condition and how it manifests. It is up to us now who have struggled to speak out vulnerably, spread awareness, and encourage people that they are not alone in their suffering. This is the pathway to earlier recovery for others.
What symptoms did you experience?
As mentioned prior, when I was younger I experienced a myriad of physical compulsions:
violent head shaking to “cancel out” bad thoughts
shoe tapping and clothing pulling to get things to feel “just right”
adding “I think” or “almost” to everything I said, because I wasn’t 100 percent certain what I was saying was true
arranging everything “just so” to avoid causing a fire
yelling “that’s terrible” anytime I heard or thought of something bad, or else God would think I wanted it to happen and would make it happen (since I’m that important that the world revolves around my ability to make things happen or prevent them from happening, right?)
speech repetition as if others didn’t hear, or to clarify what I originally said
various hand motions and facial contortions to get the “just right” feeling
The bulk of my compulsions presented/continue to present in the mental realm:
neutralization, or canceling out bad thoughts in my head
avoidance (relationships, scary situations, commitment…because if I commit, it’s real and I have to face people who may not agree!)
checking—so much checking. Checking my body to gauge if there’s a sexual response, checking to see if I’m muscular enough, checking to see if I’m enjoying something enough with my partner, checking my “true” feelings about something, making sure I understand every word someone says or during a lecture—the list goes on and on.
I also want to talk a little bit about the dull feeling of depression and anxiety that accompanies OCD. Something always felt off; I could never really enjoy what I was doing because my mind was elsewhere (either in the past, future, or telling me I should be doing something else). OCD dilutes your experience of life, and is highly linked to comorbidities like depression and anxiety. The sad thing is, if you asked me if I experienced anxiety before being diagnosed with OCD, I would have told you no. That’s how poor of an understanding and awareness I had of what was going on internally. A lot of this goes back to my particular upbringing and the lack of psychological education in the school system. This needs to change.
What steps toward recovery did you take once you realized you had OCD?
When I finally received the diagnosis, I truly invested in recovery. I reached a point where I had suffered for so long that I was really ready to just surrender to the process and trust others who have gone before me and improved. This in itself is a process that takes time to recognize, because we’re so used to doing things on our terms and in ways that make us feel good (insert compulsions)—but how has that been working for you? I sure knew it wasn’t working for me, so it was time to listen to people who knew more than me.
Keys to recovery that have really worked for me:
Investing in an OCD specialist. Not a therapist who treats OCD sometimes, but an OCD therapist. I am a huge believer in this because of OCD’s nuanced nature. It’s by no means a simple disorder to understand, and you really need someone who understands it well to walk you through it judiciously and diligently.
Not being afraid to do the hard work! It’s frightening; ERP is probably some of the scariest stuff you’ll ever have to experience. But it is worth it! What I was doing up until that point was clearly not working. So it was time to listen to people who were smarter than me instead of trusting in my (faulty) ways, which led me astray for so long.
Finding an OCD support group. It’s incredibly valuable to have sufferers around you who understand how your brain works and to help you navigate the trenches of recovery. Forcing myself to be vulnerable, even when it’s uncomfortable, has made all the difference in recovery. The more vulnerable I am, the more power is starved from OCD, and the greater connections I establish with other sufferers. Isn’t this what life’s about, anyway? Genuine relationships? You can’t be in genuine relationships when you’re constantly in your head worrying about your fears and “what-ifs.” You can, however, be in genuine relationship when you’re open with your struggles, letting people in to offer love and support.
Investing serious time into the recovery process. This likely means scheduled ERP sessions in the beginning when you’re getting the hang of it. I realized if I treat OCD recovery like a part-time job, I’ll experience part-time recovery. If I treat OCD recovery like a full-time job, I’m likely to experience true growth. This doesn’t mean you have to quit your job—it just means you must be efficient with your time. I cut out a lot of sources of distraction to create time for recovery. You’re literally retraining your brain to think a different way. This physically can’t happen if you aren’t creating the time to do so! This process is not easy, and demands respect and time.
Reading OCD books! Not compulsively, but it’s important to educate yourself on the nature of this disorder. You have to know your enemy if you expect to overcome it.
Listening to OCD podcasts! I started with episode 1 of “The OCD Stories” and worked my way up, about an episode or two a week. This provides an overall understanding of the nature of the disorder, how it manifests, and multiple approaches to treatment. The variety on the show is incredible, and you get to hear from all the top professionals in the OCD world. This resource was instrumental in my recovery.
Focusing on being of service! Even when I didn’t feel ready, I went to meetings and reached out to other sufferers to try to lend a hand. Even if you’re just getting started, be someone they can listen to. Offer tips about your journey that will help them in theirs. You are capable of helping no matter where you’re at in your process. Some of the most helpful people along my journey have been those who were open about what they’ve been through, because it helped normalize my experience and diminish feelings of being alone.
Building spirituality into my recovery process. I’m beside myself with gratitude for becoming a Christian before being diagnosed with OCD; otherwise, I probably wouldn’t have needed God because I was “doing so much better” with all of my psychological growth. Somewhere along the way I recognized OCD has played a large role in my life, but it doesn’t define me. I believe all disorders, illnesses, and suffering are consequences of a fallen world. It shouldn’t be denied that it affects us immensely, because it does. The disorder is present, no denying that. But on a deeper level, I believe there are also spiritual influences playing a significant role and perpetuating the intensity. I now recognize how important it is for me to approach therapy through a lens of attacking spiritual deficits that underlie the disorder, right alongside specific OCD treatment modalities. For example, the need for certainty, the need for control, and a constant pursuit of perfectionism underlie most of my themes. As I seek to resolve these fundamental issues, I’m addressing all of my OCD at once. When I seek truth about faith, I realize how small OCD becomes and how much grander life is. There are so many better ways to spend my time than obsessing in my head about my themes; maybe they’re true, maybe they’re not—but God’s got me. Merging faith and psychology has helped me experience a more significant, more meaningful, richer recovery—and a more significant, more meaningful, richer life.
Do your friends and family know you have OCD? If so, how much have you shared with them? How did you go about sharing your diagnosis?
This is a tough one, and something I’ve certainly struggled with. When I was just starting, since it was such a transformative time in my life, I felt a lot of anxiety around having to tell everyone what was going on in my life. I was also just so excited to finally understand why I was the way I was, and naturally wanted my loved ones to know too. Now, I’m in a place where I am comfortable sharing it with close friends and family in my life, as it comes up organically (not forced). Naturally, I want people in my life now to know what I struggle with (in the past this wasn’t the case; I was so embedded with perfectionist compulsions that I could never imagine telling someone what goes on in my head. One of the many tangible markers of recovery!), but it shouldn’t be done in a compulsive manner. If you feel a ton of anxiety and pressure to share, it’s probably compulsive in nature. If it comes up naturally and facilitates connection in a one-on-one relationship, go for it! I’ve also found that when I’m vulnerable, it helps others open up about their struggles, which strengthens our relationship.
Have you faced any stigma or judgment? How have you handled it?
Certainly. Most of the judgment I’ve experienced comes from a lack of awareness or understanding by those closest to me, regarding mental illness. Originally, I wanted so badly for them to understand my struggle and truly support me in the process. I realize now how ineffective and unnecessary this is. I can barely understand this confusing disorder, so how can I expect those around me to “really get” what I’ve been through? That’s where having people in your life who do understand and you can commiserate with is really critical. Then, there’s less pressure to explain yourself and confess to everyone, and you can just rest in a place of uncertainty: they may never truly understand, they may never really get what I’ve been through, and that’s okay because it’s not a prerequisite to me getting better or living a full life. This also gets tied up in the idea of overcaring what others think of you (which lumps over into social anxiety but also manifests frequently in OCD sufferers). If you’re designing exposures around caring less what others think of you, naturally you will desensitize to people who don’t understand mental illness and your particular experience. This doesn’t happen overnight and is totally a process (I still struggle with it!).
A lot of people with OCD feel frustrated and offended when they see misleading memes about OCD or hear people say things like, “I’m so OCD about my sock drawer.” Others say we have much bigger issues to focus on, such as access to proper treatment. How do you feel about it? If it bothers you, how do you react?
I tend to align with the latter approach. It is an ineffective use of our time to get thrown off course every time someone demonstrates ignorance about mental illness. I tend to take the approach of trying to show them compassion, i.e., “Man, I really wish you understood, but I accept the multitude of reasons that you don’t.”
If it is someone I’m close with and the opportunity is there to educate them, I will certainly take it. But I don’t get bogged down trying to proselytize to every individual who misunderstands OCD. I don’t think it would be an effective use of our time, and frankly many people aren’t interested in being educated about it and I can’t change that. While it breaks my heart that they throw the term around loosely, the truth is that they probably don’t know how debilitating a disorder it is and therefore are not trying to be malicious.
What’s one misconception about OCD you wish you could clear up?
Just one?! How about a few?
It’s not about the theme. We get so bogged down with the theme of our obsessions, because it feels so real to us. (“This time, it’s actually true.”) Overemphasis on the content keeps us in the obsessive-compulsive cycle. It’s important to do exposures related to particular themes; however, it is absolutely critical to recognize that our brain is doing the same exact process each time, but it just latches onto a variety of different themes. Why is it important to recognize it’s not the theme? Well, that way we’re not surprised when it latches on to a new theme. Because it will!
Instead, we can recognize “there you are again, my OCD buddy,” and treat it the same. It no longer feels like you have to undergo this exhaustive new process all over again with the new theme. Instead, you respond just like you treat everything else: accept the uncertainty, lean into the fear and anxiety, radically accept your experience, do exposure, and then choose to pour into your values.
Stop trying to experience 100 percent resolution of OCD. This is actually detrimental to your recovery process, unrealistic, and unnecessary. When we seek 100 percent resolution, it makes us perfectionistic about our recovery. It takes us away from being a human who naturally experiences suffering during this life. It creates this tendency to strive for a “perfect, 100 percent happy life,” which only leads to more suffering and unhappiness. It’s this constant pursuit of happiness that ironically makes us less happy.
I don’t want 100 percent recovery. I want management of my symptoms, and the ability to live a full life where I passionately pursue my values. This process, in a twisted way, has been incredibly rewarding. I’ve learned so much about myself and how the world works through treatment, and believe I have experienced more as a result of what recovery continues to push me to do. I’m less afraid of normal things people are afraid of. Dr. Jon Grayson routinely says those who undergo OCD recovery become “better than normal” because of their ability to be more comfortable with uncertainty than the average person, and I finally understand what he means now.
I want to be reminded of my struggle (from time to time, not all the time, okay, brain?) to keep me humble, foster reliance on God, and to help others who still struggle. If I’m totally absolved of this disorder, I’ll get rusty and stop practicing recovery, become less adept at serving others, and ultimately pride myself upon my ability to overcome this rough disorder perfectly.
Besides, I don’t believe it’s possible to experience 100 percent recovery. Maybe it is, maybe it isn’t—I can’t know! But this is our..
When today’s guest, Aneela Idnani, was at the 2017 OCD Conference in San Francisco, she met a man from London—Stuart Ralph of the OCD Stories—and told him she was from Minneapolis. He said, “You should meet Alison Dotson. She lives in Minneapolis.” It took her traveling to California and chatting with a man from England to ultimately connect with me back home—and I love that! Part of me thinks, “Geez, Alison, you could do a better job of networking with people in your own city,” but another part wonders at the forces that pull people together.
Aneela, as you’ll learn as you read on, is smart and innovative and is changing people’s lives for the better. After struggling with compulsive hair pulling, or trichotillomania, for years, she finally learned she had a disorder—and once she knew how to help herself, she set out to help others. My favorite kind of person.
Q. You’ve lived with compulsive hair pulling. How did it affect your daily life?
As a kid, I was a hair twirler and thumb sucker. I started hair pulling in my tweens and I didn’t really know why back then. It was just soothing and comforting. I now understand, through actively taking the time to look back and analyze, that my hair-pulling disorder started after I moved to a new town and got worse after my dad fell sick with cancer. The biggest effect trichotillomania had was on my own self-esteem. I was always nervous people would find out. It consumed me. I hid my pulling—mostly eyebrows and eyelashes—using makeup. But I always felt people could tell. I let this vicious cycle feed a voice of negative thoughts—I’m ugly, I’m not worthy of love, I’m stupid.
I sort of went through the motions growing up. Numb from my hair pulling and the loss of my dad. Sure, I had friends—great friends—but still always felt very alone. And I let myself give up on things I loved like going out for the basketball team or playing saxaphone because of my fear of being found out.
Q. Many people with OCD and related disorders say it took them years to get the proper diagnosis and the right treatment. How did you realize you had a more serious problem and not just a habit, and how did you go about getting help? Did you go through a period of being misunderstood and misdiagnosed?
In the past few years I’ve met thousands of people with trichotillomania, dermatillomania, and other body-focused repetitive behaviors (BFRBs). From all the stories I’ve heard, one common theme has emerged: For most of us, we spent our early years not knowing that these compulsive pulling and picking behaviors were in fact mental health disorders. We hid in shame and fear of judgment because of the perception that these actions are choices. We felt alone in the battle. I also found that most people used Google to figure out that this “thing” they were doing was an actual thing!
This education and understanding is a huge hurdle that millions have yet to cross. But when they do it starts the true journey to recovery.
In my twenties, I realized my hair pulling had become a serious problem. It was affecting my life too much—mostly the physical manifestation fed my insecurities and my negative self-speak. That translated to actions that held my life back. This is when I did my Google search, found the term “trichotillomania,” and found the nonprofit organization for people like me: TLC Foundation for BFRBs.
After I took the time to understand the disorder, I still hid and met secretly with a psychologist and a hypnotist. Neither worked for me because neither understood the disorder because of lack of education. I also joined an online Facebook support group and started using some of the strategies from there.
Finally, about four years ago I met with a psychologist trained by BFRB.org. She used cognitive-behavioral therapy (CBT) and other processes designed to help people with dermatillomania and trichotillomania. It was during this time that I learned that while these disorders are classified as OCD-related, they are not exactly OCD. The thought process is different and therefore the treatments are different.
Q. How did you tell your loved ones about your diagnosis? Did many already suspect your BFRBs had become an obstacle for you?
Ha. I was caught! Three years ago, as I was getting ready in the morning, my husband caught me without eyebrows. I just hadn’t gotten my makeup on in time. He asked me and in that moment I decided to stop lying and finally shared my mental health condition with the man who promised to love me in sickness and in health.I don’t know if others suspected. I think the opposite, because sometimes friends would actually compliment my eyebrows—not knowing they were drawn on!
Q. Let’s say a school-ager approaches you and says, “I can’t stop pulling my hair, and my classmates have started to notice and make fun of me. Even my teacher seems annoyed and tells me to just stop because I’m distracting everyone. How can I help them understand?”
The best way to help people understand something foreign is to compare it to something familiar. To help someone understand BFRBs, I would ask that person, “Would you tell a person with diabetes or cancer to ‘just stop’ having those issues?”
Whether it is diabetes, cancer, or BFRBs, the body is doing something internally that we have no control over. It’s just that for hair pulling or skin picking or nail biting, it causes an external action, giving the appearance that there is a choice and we are doing this voluntarily to ourselves.
I think when we can get others to understand, then we will be met with compassion instead of judgment. The unfortunate part is that we have to do the hard work of explaining and hope that others have open hearts and minds to take in the knowledge we are imparting.
Q. How did you go from struggling with hair pulling to founding your own company, HabitAware, through which you help countless others with BFRBs?
I’d probably still be eyebrow-less if my husband, Sameer, hadn’t caught me a few years ago. After I told him that I had trichotillomania we talked about it and he began noticing my behavior more. Then one evening after work, while relaxing on the couch watching TV, his hand slowly pulled mine away from my head and I turned to him and said, “I wish I had something that notified me.” We are techies and knew it was possible. When we couldn’t find it, we set out to build it. We formed a team at a Minneapolis hack-day event and when the prototype worked for me we kept working nights and weekends until we had better—and more—prototypes to test with other people. And when those worked for them, we just kept pushing and the doors kept opening until we knew we had to give up our “real” jobs to make our idea a reality for others. That’s how we started HabitAware and it’s really been incredible the number of lives we’ve been able to change since our March 2017 launch!
Q. Tell us about Keen, the smart bracelet designed to bring awareness to and refocus users from BFRBs.
Keen is that thing I wished for that would notify me when I was pulling. Keen is a smart bracelet, or habit tracker, that uses customized gesture detection to bring awareness to an unwanted behavior. Training Keen takes less than a minute with our mobile app. When Keen senses a mathematical match between an actual hand movement and the trained gesture, it vibrates. This vibration, in a sense, distracts, the brain. It shifts the behavior from the subconscious to the conscious mind. It wakes a person up and is just a gentle reminder that “Hey, your hands are not where you want them to be.” With this newfound awareness, a person wearing Keen now has the power to make a new choice and can retrain their brain away from the unwanted behavior and toward healthier replacement strategies.
I am so thankful for this disorder because it led us to inventing Keen and to helping so many around the world find hope, peace, and a powerful tool to help overcome!
Q. How can my readers help spread awareness of BFRBs?
We are in this together and if we want others to understand the pain of mental illness we need to share how are lives are affected. We need to work together to end the stigma and fight for equality and access to mental health care. So my ask of your readers is to share my story and to share their story.
Q. If you could share just one piece of advice with others with BFRBs, what would it be?
I believe hiding our disorders, because of fear of judgment, is holding us back from recovery. Our secrets are making us sicker. We need to be open and vulnerable—knowing that some people just won’t appreciate the gift you are sharing with them. Dismiss them and keep sharing anyway. It will help you release the burden. If you are hiding, please let it out! It can be writing in a journal, painting on a canvas, or talking to a friend or loved one. You never know whose life you can touch or how your sharing can cause a ripple effect! I wish you love, strength, and awareness.
Kids with obsessive-compulsive disorder (OCD)—and their parents—will feel less alone and more empowered after they’ve curled up with Payton Is Afraid of Dirt by Shanna Simpson, illustrated by Idmary Hernandez (Future Horizons, 2017). Payton isn’t afraid of just dirt: He’s worried germs will make him sick, and he’ll get others sick, so he cleans his room, washes his hands, and avoids touching “dirty” objects. Compulsive hand-washing is perhaps the most widely known symptoms of OCD, and Payton performs this compulsion enough that his parents notice.
Payton’s family worried. Dad said, “Why are you cleaning your room so much?”
While no kid is lucky to have OCD, Payton is lucky that his compulsions were visible to his family and they were able to get him the right help. Too often family members don’t have any idea that kids are suffering because they’re dealing with mental compulsions they don’t know how to explain. Payton has a head start! His parents have been concerned for a while, and when it gets to the point that Payton no longer enjoys his favorite activity, playing baseball with his best friend, they decide to take him to a psychiatrist.
The scene with the diagnosing psychiatrist is a little long, but it’s thorough and helpful. It’s used to explain what OCD is and how it’s treated, and it should give young readers an idea of what an appointment with a psychiatrist will be like. Several strategies are noted, and medication is mentioned as a possibility as well. While the gold standard of exposure and response prevention (ERP) isn’t spelled out, it was hinted at when Payton slowly built up to touching a baseball, and readers may also like the ideas to put worries in a special box or to “shrink” obsessions in a machine.
I highly recommend that teachers and parents read Payton Is Afraid of Dirt; parents can read it themselves as well as to their child. The book ends on a hopeful note, and while the overall message may not reflect reality for many with OCD (as it takes an average of 14 to 17 years to get a proper diagnosis), it is positive: Payton is diagnosed early, his family is supportive, and he gets better, which is really the goal of spreading OCD awareness.