Tuesday Q&A: The Secret Illness


secretillnessiiThe Secret Illness is a beautiful, illuminating art project that spreads awareness of OCD to those who don’t understand what it really is and helps those who understand it all too well feel less alone. It gives sufferers an outlet for sharing their stories without fear of stigma, because their faces are pixelated and they can decide how comfortable they feel about sharing details such as their name and location. I did one myself, and I had them use my first name and my state, but others are completely anonymous, leaving off their names as well as geographic details. Let’s learn more from the project’s founders, Becca Laidler and Liz Smith!

Q. Do you have OCD yourself?

Becca: My mother has lived with OCD since she was young although she was not diagnosed until much later into adult life. Growing up with her routines and rituals has made me very aware of my own mental health. I do not feel like I live with OCD on a day-to-day basis, but when small rituals do find their way in during stressful periods I find it quite panic-inducing as I have seen the effect on my mum when they get out of control. I have written my own blog post on The Secret Illness wall about my relationship with OCD.

Q. What inspired you to create the Secret Illness, and how did you make it a reality?

Becca: I feel that if my mum had been diagnosed at a younger age she would have had a much more enjoyable and happier life. Even now after diagnosis she feels embarrassed talking about how OCD affects her day-to-day life. We wanted to create a safe place where people could speak their fears without being judged and create a catalog of varying experiences so that people can see they are not alone. We are extremely lucky to have some great collaborators and volunteers who help us make this a reality.


Becca Laidler

Liz: Becca! When Becca told me about her mum’s experience I realized I had no clue about what OCD was and I wanted to explore it more. Then soon after I had an amazing conversation with someone I met quite randomly on a plane trip to New York who was diagnosed with OCD, and that just increased my interest further …we’re still in touch to this day.

Q. Are you surprised by the response you’ve gotten to your call for submissions? 

Becca: We were blown away at the response from the OCD community. I never imagined we would get as many posts as we have and from all over the world. We have also been sent so many poems, paintings, music, and other creative works based on OCD. The work is of such a high standard and breathtakingly honest.

Liz: I had no idea what to expect, but the response went way beyond anything I had imagined both in terms of the number of the responses and the quality of the responses.

Q. Your beautiful project is fostering understanding and breaking down stigma about OCD. What do you think is the most harmful misunderstanding about the disorder?

Becca: Most people think they know what OCD is already ,which means misunderstandings have to be broken down first before people can accept the true debilitating nature of this illness. When people use OCD as a positive adjective for being neat and tidy it can be very demoralizing to those suffering in silence.

Liz: Same answer as Becca: the fact that people think they already know what it is, so when they come across it in reality it gets left undiagnosed because they don’t recognize it as the OCD they think they know about already.


Q. How can my readers get involved with the Secret Illness?

Becca: We welcome new wall posts from anyone with a relationship to OCD. These can be as long or short and as anonymous as you like. You can email them to wall@thesecretillness.com. We also welcome any creative works relating to OCD and any creative individuals who may want to volunteer to help us achieve our films and installations.

Liz: In addition to what Becca has already said, we’d like to hear from people as to what topics they’d like us to cover in the podcast series or perhaps they would be up for being interviewed for the podcast. We’re also always on the lookout for creative industry professionals to get involved, so for example Mitch Grussing, who lives with OCD himself, is a composer by trade and he volunteered to compose the music for the podcast (and didn’t he do a wonderful job!). Are there any illustrators, designers, animators, video editors, sound designers/editors out there who are living with OCD who would like to collaborate and help us turn some of the wonderful poems and monologues we’ve been sent into short films? We’re also interested in talking with people involved in theater and I’m on the lookout for someone who has experience of creating physical art installations.

Q. If you could share just one piece of advice with others who have OCD, what would it be?

Becca: You are not alone. The more you speak about how you are feeling and what you are going through the easier it is for you to receive the support or treatment you need. Many people never speak their intrusive thoughts out loud as they fear they will be judged as crazy or dangerous, but this is what OCD wants. Have a look at some of the accounts on The Wall and you will see how many people thought they were the only one feeling this way.

Tuesday Q&A: Mark Joyella


mental-illness-awareness-181If you know me, you know I believe we all have the power to spread awareness, even if it’s to one other person in our lives, and that every little bit matters. A journalist with nearly 12,000 followers on Twitter, Mark Joyella is in a position to spread awareness far and wide, and we’re lucky enough that he’s willing to! I first heard of him when he wrote a great piece called “Screw stigma: I’m coming out” about his personal experience with OCD, and I’ve since learned he stands up against the stigma and misconceptions surrounding mental illness in general.

Q. As a journalist, you’re in the public eye. And, right or not, people have certain expectations of public figures, so you took what some would consider a risk when you wrote “Screw stigma: I’m coming out.” Why did you decide to disclose that you have OCD? How was the piece received?

A. I had grown increasingly concerned about the content of news stories and how mental illness was being handled — it felt to me that instead of illuminating the topic, some of the reporting merely reinforced stereotypes. I felt that failing to disclose my own illness —  and refusing to speak out because I didn’t want my illness public — had become an unbearable situation. The reaction was exceptionally positive, and I immediately connected with other journalists who had revealed their mental illness — and others who weren’t ready to do so.

Q. You note in that piece that you were never shy about telling co-workers about your physical symptoms and ailments, and refer to being recognized during a colonoscopy as “a decent anecdote.” But you weren’t willing to talk about your mental illness in the same way. Tell us why.

A. I think most people look at physical illness as something that happens to you, while mental illness, unfairly, is seen as who a person is — that’s why people with mental illness often feel judged or blamed. There’s also a kind of bond in sharing stories of physical illness — even the awkwardness or unpleasantness of the illness or the treatment — that makes sharing stories an easy thing to do. But with mental illness, there’s no guarantee how you will be received, and no way to know if anyone will identify with what you are experiencing, even though the statistics tell us it’s highly likely in any given workplace there are several people who are in some way touched directly by mental illness.

Q. When were you diagnosed with OCD, and how did you realize what you’d been going through might be OCD?

A. OCD was first mentioned to me by a therapist as we were working on my struggle to break out of personal isolation — there were tons of fears that kept me inside my home and not living. But because I was able to get to work and even travel extensively on stories, I wasn’t aware of how isolated and afraid I really was.

Q. After you were diagnosed, how did you feel? How did you go about treating your OCD symptoms?

A. On the one hand, it’s nice to know there’s an explanation for what you’re experiencing, and I liked that. But OCD? Because I don’t have outward compulsions, it was hard to accept at first. But a psychiatrist agreed with the diagnosis, and off I went. I began studying up on the disorder, began taking medicine to treat it, and I began to get better.


Q. People often ask me how I told my loved ones that I’d been diagnosed with OCD, so I’ll pose the same question to you: Who did you tell, and how?

A. I didn’t tell anybody at first. The only person outside my doctors who knew was my girlfriend — now my wife — who had struggled with the walls I had put up to protect myself. She had suspected OCD, but I must admit it sounded like a wild idea until the “experts” said, yep, that’s it. The rest of my friends and family learned of my diagnosis when I wrote my story. Probably not the best way to bring it up — but it worked, and I’m sure I would’ve lost endless amounts of sleep trying to prepare for a conversation about it — this way the band-aid came right off and I didn’t have to begin the conversation at all. “I read your story,” people would say, and we would talk about it. For me, that was the easiest way: I threw it out there all at once.

Q. What advice do you have for my readers who want to advocate for OCD awareness but don’t know where to begin? And what if they’re worried how people will perceive them?

A. I’ve been massively impressed with the ways people advocate for OCD awareness — with small steps and giant efforts. There’s a way to do it for every person. I’ve used social media to call out news stories that I felt were poorly done, and to try and boost the signal for people who have good stories to tell. But sometimes the smallest actions — like seeing a person on Twitter who says they are suffering with the illness, and responding “you’re not alone” can have an impact. Imagine hearing that from a person in a country far away when you really, really needed to hear it.

Q. I admire how open you are on social media, and how willing you are to call people out when they’re being ignorant. I laughed out loud at this one. I’ve been insulted and even sworn at for doing similar things. Have you ever really gotten into it with anyone?


A. I’ve had fellow reporters get very defensive when I criticized the words they used in stories (one example: a reference to a person with mental illness “escaping” from a “mental institution.” I wrote: “do you mean a “patient” fleeing a “hospital”? The reporter blamed the law enforcement agency for using the terms, and said he was merely repeating what the “official” information was. I said, you know, you don’t have to repeat stigma-reinforcing language. And people get really offended when you call out OCD jokes. They never meant any harm and they can’t believe you are attacking them for turning OCD into a punchline. But man, I hate those jokes so, so much.

Q. On a broader level, you’ve worked on several pieces addressing how the media reports on mental health in America — for example, it seems that whenever there’s a mass shooting reporters feel comfortable diagnosing the shooter with some mental illness or another. What can reporters do differently — and better?

A. Reporters can get educated. There are tons of resources — around the world — for journalists to learn more about what mental illness is, how common it is, and how not to fall into the traps of writing stories that are filled with inaccurate assumptions.

Q. If you could share just one piece of advice with others who have OCD, what would it be?

A. It’s OK to not be OK. Recovery is not a straight line, and I find that great weeks when I push my boundaries and challenge my fears, are often followed by weeks when I need to step back and while it’s tempting to see that as a failure or setback, I think it’s like resting a sore muscle after pushing it hard during training. You don’t just get stronger and stronger. You push, you rest, you get stronger, you push again.

Tuesday Q&A: Jonathan Grayson


14610589_1152487181504817_1808445062_nMaybe you haven’t met Jonathan Grayson in person, and maybe you haven’t read his book — yet. But if you’ve been to the International OCD Conference, you’ve probably seen him leading a huge group of people through the hotel lobby, armed with a bullhorn. Ask a random sampling of these people what their favorite part of the conference was, and they’re likely to say it was this Grayson-led adventure, the mini-version of an OCD camping trip where people take a couple of hours out of their long weekend to face some of their biggest fears.

Of course, as an OCD therapist Dr. Grayson guides people through their biggest fears all year-round, not just once a year at the OCD conference. I’m so honored to share some of his insights here, and I hope you’ll find his advice helpful.

Q. When did you decide to treat OCD specifically? Did you know while you were still in school, or did you decide after you’d been in practice?

A. The short answer is that I’m working with OCD because I wasn’t able to control my life when I wanted to. Before elaborating, let me give you some background. Before I had ever heard of OCD, in high school, the inherent uncertainty of reality fascinated me. I went through a long period of aggravating almost anyone who spoke to me by ending almost every statement with, “more or less.” “More or less what?” they would question, to which I’d respond, “If it’s more or less, does it matter?” For my college honors thesis, my supervisor commented, “You’ve picked a very ambiguous area as your focus — that’s just like you.”

My circuitous path to OCD began with graduate school. Using the shotgun method of applying (apply to as many schools as you can afford and maybe you’ll have a hit), I had applied to all of the schools that attracted me and was looking for a safety school. With typical East Coast bias, I settled upon the University of Iowa — what could possibly be in the middle of Iowa? Upon getting in, I discovered Iowa was a good school and that’s where I chose to go. If I had known it was good school, I wouldn’t have applied. Going to UI and working primarily with Dr. Tom Borkovec, who is well known in CBT circles, led to me getting an internship at Brown, where I worked with my first OCD patient. This still wasn’t the beginning, the deciding point, of devoting myself to OCD. On my internship, we were allowed to choose our rotations, though all rotations had to be filled. The one rotation I did not want, was the intensive alcohol dependence rotation. I got stuck with it. The basis of the GOAL groups, which played a significant role in my early reputation, came from that rotation. Finally, when looking for a first job, my wife and I decided to stay on the East Coast, but I didn’t want to go back to Philadelphia. The only job I could find was working with Edna Foa on her first OCD grant. At that time, we were the only OCD center in the country and her research on exposure and response prevention (ERP) is the foundation of all treatment today. So my devotion to working with OCD began in 1979 working at Temple University with Dr. Foa. So there were three critical occasions in which had I had control, I would have made decisions that would not lead to my present life. I like to think the alternative life would have been good — maybe or maybe not, I’ll never know. I do know I like this reality and feel so lucky to have a passion for my work. The takeaway: You may not get what you choose in the short run and the path to success is moving forward with whatever happens. Alternative realities/fantasies are perfect, but they because they aren’t real.


Q. Not only is your book Freedom from Obsessive Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty well rated and well reviewed, it also won the Self Help Book of Merit Award from the Association of Behavioral and Cognitive Therapies. That’s quite an honor! Where did you get the idea for the book?

A. Thank you for the compliments. It is my heart and soul. I kind of wanted to write a book; I’m opinionated enough to feel and hope that I had something different to offer. However, it wasn’t until I was lucky enough to be approached by an agent about writing a book that it became real. The agent asked if could I write a self-help book about OCD that could be about 300-400 pages long. I had just completed a 25-page document for the OCD Foundation that I felt contained everything I knew about OCD. So, of course, I said yes. I had three goals in writing my book. I wanted to help people understand all of the ins and outs of OCD in a way that made sense. To say, for example, OCD is a neurobiological problem that is related to serotonin availability in the brain may be an explanation, but it is not something that helps the sufferer to understand the experience. I believe that treatment works much better if the sufferer has an explanation that makes both logical and emotional sense; that is, the logic of the explanation should be accompanied by an exclamation of “That’s me!” Freedom from OCD is written exactly the way I speak to sufferers — without the uhs and ums — in hopes it would make sense to sufferers and to give professionals the language to use. The second goal of the book has to do with the twofold problem all self-help books have: Will the reader follow the program outlined in the book and is the program actually doable (and individualized so that it isn’t a mechanical manual)? Hopefully the program I outlined achieved that. As to the original question, where did I get the idea for the book, it was simply the sum of my work with OCD.  I often joke that I only know about 40 minutes of material that is not already in the book.

Q. It’s incredible how much progress has been made in understanding OCD in recent decades. You started the first OCD support group in 1981. Are you surprised by how much awareness has grown since then? What do you attribute it to?

A. I’m afraid I disagree with the premise of the question. The core of treatment is still the same as what we were doing in the early ’80s; although, it is true we have found a number of ways to augment and facilitate treatment through the use of ideas from acceptance and commitment therapy (ACT) and mindfulness. However, all too often I also see these same techniques and others used incorrectly. In ’80s, I assumed that by the ’90s OCD treatment would be easy to find and available everywhere, that I would be good for supervision, but not part of a small therapy community. Tragically, I still see people who suffer unnecessarily for years, not because they have OCD, but because of therapists who don’t know what they are doing. In their treatment guidelines for OCD, both the American Psychological Association and the American Psychiatric Association agree that ERP is the first line treatment for OCD. There are virtually no OCD experts who disagree, whether their prime focus is upon the psychology or biology of OCD. And yet, it is still hard to find providers who know how to treat OCD, even in major cities. Unfortunately, we have discovered that it is easier to help someone suffering from OCD than it is to change the behavior of mental health professionals.

Q. I know many people who’d love to start a support group but aren’t sure how to go about it, and they may think they need to be therapists or “perfectly” recovered in order to be effective. Do you have any words of encouragement or advice?

A. The most difficult part of starting a support group are the initial logistics of where to hold the group and how to let the public know that it is available. I don’t think a therapist or “perfectly” recovered person has to run the group for it to be effective. My personal preference is therapist-assisted, meaning the sufferers run the meeting, but a therapist is there to troubleshoot; however, that is my preference, not a rule. The main quality required of the organizer(s) is dedication. There is a GOAL (Giving Obsessive-Compulsives Another Lifestyle) manual available to help people start and run a group. The manual is available in three places: It is included in Freedom from OCD, or it can be downloaded for free from the International OCD Foundation or from FreedomFromOCD.com.

Q. What do you see as the most common misconception about OCD?

A. I think there are one and a half conceptions. The half is that most non-sufferers don’t realize that the core of almost all OCD problems is intolerance of uncertainty in the sufferer’s problem area — or to put it another way, in the sufferer’s problem area, there is an attempt to be 100% certain, e.g., I want to be 100% sure I’m clean, 100% sure I’m not gay (or straight), 100% sure I didn’t run someone over, and so on. There are two problems with this. First, research has shown us that the only people who are 100% certain are stupid. Since most people with OCD have above average intelligence, we won’t be able to help them be certain. The second problem with certainty is that it is not a fact, but an emotion like anger, joy, and sadness. We may be able to decide how to express an emotion, but not whether or not to have it. Certainty is an emotion that correlates with reality, but not perfectly. Most of the time, my feeling of certainty — terrorists aren’t waiting for me outside of my office; my car isn’t stolen; my wife is alive — turn out to be true. But that doesn’t mean the feeling reflects truth. In this country, I assume that most people on their wedding day feel certain they will be with their new spouse forever. Half of them will be wrong. Certainty is a nice feeling, but it doesn’t mean that you are holding onto a truth.

Failure to recognize intolerance of uncertainty is the half a misconception. The other misconception is the failure of non-sufferers to recognize the agony of having OCD. The reason for this is indirectly the fault of sufferers. For the most part, people with OCD are experts at hiding their symptoms and if they talk about their symptoms, they sound calm.  We have a name for this ability: Competence, the ability to function when stressed as if everything is okay. It is a great skill and I don’t want anyone to get rid of this skill. I do want to help people to not have to rely on it as often as they do. The plus side of the skill is that it allows people to keep functioning and to hold onto careers. The downside is that non-sufferers assume that there is no pain to OCD, that you just do those “weird” things.

Q. My psychiatrist once told me that since many doctors don’t understand what OCD really is, they’d sometimes refer patients who didn’t have an issue with OCD at all. He’d have to tell new patients that they didn’t have OCD, they were just really neat. Have you ever had to “undiagnose” someone with OCD?

A. I’m afraid the opposite is true. I regularly see OCD sufferers who were told that they didn’t have OCD, because they don’t check or wash their hands. Horribly and amazingly, these practitioners know nothing about pure O and other variations of OCD.

Q. You run an annual OCD camping trip. Tell us about it. Why should someone with OCD attend, and what can they expect?

A. This question could consume more than a few pages. It has been a few years since I’ve run the weekend camping trip. Every year, at the International OCD Foundation’s conference, I do a mini-version of the trip in which I take 200-300 people through whatever city we are in to do exposure. It is hard to describe the magic. Imagine if I asked you to tell me about your favorite movie in five sentences. I might have an idea of the plot, but wouldn’t really be able to have an emotional feel for it. So let me just say that it is magic. People willingly do things they would never believe possible for themselves, everyone is sharing an intense camaraderie and having fun, and, although no one is likely to be cured in two hours, I have seen many people make a small permanent gain that carries over to the next year’s trip.

Q. If you could give just one piece of advice to someone with OCD, what would it be?

A. Asking someone like me to give just one piece of advice may be the hardest challenge ever. The most important thing to remember about overcoming and coping with OCD is that the goal is living with uncertainty. It is a scary goal, because it means anything can happen. But it is a condition of humanity that we all live with, even sufferers. In the areas of your lives that are unaffected by OCD, you behave like everyone else. I assume almost everyone reading this does not want to be maimed, paralyzed, and disfigured. Despite this, you get into cars, cabs, and buses where some idiot might ram into you and leave you in a mess. And if this isn’t your problem, you cope with it the “normal” way: You hope you don’t have an accident and your plan is to not cope with it until you’re being crushed under the metal of a crash. Coping with uncertainty means being determined to cope with any outcome, no matter how horrific. Suicide is not an option. Some of you may believe you have situations too horrible to contemplate. Rather than go over them here, let me assure you, we have discussed them all and how to cope with all possibilities. If you doubt me, talk to an OCD expert or read my book. Why would I want to risk living with every possible uncertainty and every possible horrific outcome? Because there is no other choice that will allow joy in your life. In the end, the past is made of nice memories, the future of hopes, and the present is all we really have. We make plans for tomorrow just in case we survive. The result of learning to live with uncertainty is learning to have the joy of the present instead of missing that because you are in OCD land.

Review of Because We Are Bad: OCD and a Girl Lost in Thought


Because We Are Bad (Canbury Press, May 2016) is an apt title for this charming yet heartbreaking and gripping memoir: Author Lily Bailey thought that she had to be perfect to keep her family safe, and part of being perfect was performing rituals the “right” way every time and keeping a log of everything she’d done wrong and had to atone for later that day. It’s clear how time-consuming and distressing Bailey’s obsessions and compulsions were, and it’s a reminder that no one wants OCD. Who could?

Bailey guides us through years of her life, including her childhood when OCD symptoms first surfaced. Lots of kids have imaginary friends – they’re fun to play with when everyone else is busy, and they’re easy enough to boss around. But in Lily Bailey’s case, her imaginary companion is no friend: It’s OCD, and it’s the bossy one. While Bailey’s relationship with OCD is cleverly woven into the memoir, there were some confusing scenes. Take this passage, for example:

We make our way back to our room and check it’s safe for us to go to sleep. We open our drawers, feeling around the insides with our hands. We worry that there might be someone, or something, hiding inside. We check our wardrobe and under the bunk bed.

The “we” in the above scenario doesn’t refer to two people – Bailey’s talking about her herself and her “friend,” OCD. When I would sit down to read for a reasonably long stretch of time, this strategy worked well for me. Other times, I had to reread a couple times, especially if the scene involved other people, such as her younger sister or a school friend. If this bothers you, hang in there through the whole book. It’s worth it.

Although it didn’t take quite as long for Bailey to be diagnosed as so many of us, her road to recovery was still long and bumpy. She attached too strongly to her therapist and felt she had to please her by being perfect; she was admitted to a terrible psychiatric hospital where doctors changed her medication multiple times with no explanation and group activities were more valued than actual cognitive-behavioral therapy; and after her hospital stay she was often triggered by daily life. You’ll be right there with her through the peaks and valleys – and for a while there are mostly valleys – wanting the best for her.

Bailey’s life turned around when she started to open up about her symptoms to others, and not just family members and therapists. Being open about our disorder can be hard, but it can also be freeing, and Because We Are Bad illustrates this beautifully.

Tuesday Q&A: Kirsten Pagacz


kirstenocdcircusKirsten Pagacz seems to lead a dream life — just browse through some of her photos and you’ll see what I mean. Is that Kirsten with Dick Van Dyke?! There she is at Comic Con, having a blast. And she owns the most charming little store! Her life is pretty good now, but it hasn’t always been that way. Like so many of us with OCD, she suffered in silence and confusion for decades before finally being diagnosed, and that enlightenment was all thanks to chance. I’m excited to meet Kirsten later this week, when she’ll be in town to sign copies of her hot-off-the-presses book, Leaving the OCD Circus: Your Big Ticket Out of Having to Control Every Little Thing.

Q. Like so many other people with OCD, you went undiagnosed for decades. How did you finally know where to turn for help and a diagnosis?

A. My husband Doug and I knew there was something terribly wrong; however, we did not know it was OCD. Actually twenty years ago, I had never even heard those letters strung together; it was not in the common vernacular as it is today. One day, Doug was listening to NPR and a PSA came on talking about obsessive-compulsive disorder. He could hardly wait to tell me about what he heard. It was kind of a “eureka moment.” The PSA closed with something like, “If you or a loved one might be suffering from OCD, there are OCD specialists in your area.” I got the name of an OCD doctor in my community and was fortunate enough to meet with him the same afternoon.

Q. Once you were diagnosed, how did you feel, and how did you go about treating your symptoms?

A. I felt relief that the condition had a name, and I felt the biggest relief when my trusted OCD doctor also shared with me that OCD was not my fault and that it was a real medical condition. I was finally diagnosed at 32 years old, after suffering undiagnosed OCD for more than two decades. Part of my recovery and wellness process began with educating myself, reading everything that I could to find about OCD, my perpetrator and killer of joy. One of the first two things that I began doing with my doctor was exposure response prevention (ERP), and cognitive behavior therapy (CBT). I was dedicated to stay the course and dig myself out of the confines of my OCD prison.

Q. Did you tell friends and family about your diagnosis? If so, how did you go about it?

A. At first, I did not. I felt too vulnerable in the beginning of my mental health journey. I wanted to have some experience under my belt before opening up to others. My first step was expressing myself to my doctor and husband and other folks came later.

Q. You have a brand-new book on the market! How did you decide to write Leaving the OCD Circus?

A. I have read a lot of books and met with a lot of doctors and I felt it was time to share what I had learned with other sufferers and their loved ones. I constructed this book — text and pictures — to help other OCD sufferers out of their own constriction. I have been writing poetry and collecting imagery, especially vintage art and ephemera, nearly all my life. Pictures and words that really spoke to me at a core level. Some seemed to capture exactly what I was feeling. Some reminded me of pain, some of hope or the freedom I longed for. I’ve sprinkled them like bread crumbs throughout the book to help guide sufferers out of their OCD prison. Sharing and showing the key that I whittled for myself is intended to inspire others on their journey of wellness.


Q. How did it feel to put everything in writing? Did you have any moments when you second-guessed your decision to put your story out there, and if so, how did you move past them?

A. I never second-guessed any of it; it was time to expose the monster that I had been secretly trying to hide. In a sense I was spilling the beans on my abuser. I did it with determination to help other people get on to their big happy lives much sooner than I did.

Q. You own a charming retro-inspired gift shop in Howell, Michigan, and the website Retro-a-go-go.com. Does running your own business work better for you and your OCD symptoms than going to an office every day?

A. Yes, running my own business was the way to go for me. I need a home for my creativity, and it is very important to me that I set the tone of the environment and the culture. Corporate life in general was not for me, and OCD or not, I wanted out of that environment. By no means is owning my own business easy, but it is much more preferred. Retro-a-go-go.com is coming up on 12 years and going strong.

Q. You’re married. Do you have any relationship advice for my readers who are either in relationships or who feel that they can never be in an intimate partnership because they have OCD?

A. Trust, patience, and understanding are keys to a healthy relationship for me. Doug is my best friend and encourages me to be mentally healthy. The healthier I got the more I could clearly see that OCD was affecting other people in my life and I did not like or want that. When I was deep in the throes of OCD more than twenty years ago, I was on the battlefield with OCD, doing everything to be compliant so the “abuser,” OCD, would not pound on me harder for my imperfections. I sort of had no room for anything but me and my OCD. Times have changed, and I have found a way to get on to my happy life. Now it is time to share what I know with others. I feel a real sense of responsibility.

Q. If you could share just one piece of advice with others who have OCD, what would it be?

A. OCD is not your fault; it is a real medical condition. One step at a time and make your end goal mental health and wellness. Life is too rich and too wonderful to have it crushed by any illness, especially one that you can do something about. I value my time and my life so much — I cherish it and I keep doing the work that keeps me in the driver’s seat and OCD in the sidecar. OCD might pipe up with “Don’t you want to check the stove one more time?!” and I say, “Not today OCD, not today!”

Tuesday Q&A: David Adam



This Tuesday we’re hearing from David Adam, author of The Man Who Couldn’t Stop, 2015 recipient of the International OCD Foundation’s Illumination Award, and 2016 OCD Conference keynote speaker.

I’ve had several different themes of obsessions, and many people I know who have OCD do, too. David struggled with just one, a fear that he’d contract HIV/AIDS, and maybe you do, too. It’s another reminder that OCD is crafty and takes on many forms, but no matter what forms it does take, it’s treatable.

Q. Your keynote at the OCD Conference was titled “The Accidental Advocate” — you said you never expected your book would lead to speaking at schools and answering emails from others with OCD. What was your purpose behind writing the book?

A. To tell what I thought was a great story. The more I researched and read about OCD and the science and the history, the more I got the sense that there was something in it that people would want to read. And then the journalist in me kicked in and said that I wanted to write it all down before someone else did!

Q. The Man Who Couldn’t Stop was a little different from other first-person narratives in that it included an in-depth account of the history and science behind OCD. Why did you want to write about OCD in this way?

A. That was the stuff that I was most interested in. The personal narrative stuff almost came later in the writing, as a way to stitch all the material together and to provide a narrative structure. Books, I have learned, are all about narrative structure!


Q. Writing and speaking about your OCD helps people with OCD feel less alone, particularly those who relate to your AIDS-related obsessions. Has being open about it helped you as well? 

A. Yes, it’s helped with the indirect harm that was caused by previously keeping it (or anything that central to someone’s life) secret. But it hasn’t helped with the actual symptoms of the OCD, and why would it? If only it were that simple.

Q. During your keynote address, you mentioned that while many people have told you you’re brave for sharing your story, you think young people taking on advocacy are the truly brave ones. Why did you say that?

A. Because to an extent I have little to lose. I am in my 40s, have a wife and children and a job. I think it’s brave to confront a situation like OCD head-on when you know that it could follow you around — when one goes for the job, for instance. And because it takes guts to do so rather than try to pretend it wasn’t as serious as it was, which I did as an excuse not to get help.

Q. Although you didn’t mean to become an advocate yourself, do you have any advice for my readers who want to get into advocacy themselves?

A. One reason I was hesitant is simply because there are plenty of organizations who do it so well, and who would welcome help I am sure — just Google your local OCD charity or help group!

Q. OCD kept its grip on you for many years, but it wasn’t until after you became a father that you became serious about addressing your obsessions and compulsions head-on. Can you tell us more about that?

A. I simply didn’t want to do anything that would make my daughter (at the time, now a son also) more likely to follow me and to develop OCD. And after I started to involved my daughter in my own OCD thoughts and rituals, then that was the push I needed.

Q. What do you consider the biggest misconception about OCD?

A. That’s it’s about behavior. It’s a pathology of thought. And that is what makes it so difficult.

Q. If you could share just one piece of advice with others who have OCD, what would it be?

A. Tell someone, a friend or family member. And then realize it’s a medical problem that probably won’t go away without medical help.

Tuesday Q&A: Stuart Ralph


a30rzkotI’ve recently gotten into podcasts (did you know they’ve been a thing for, like, years now?), so I was happy to come across the aptly titled The OCD Stories, a well-done, inspirational podcast and website run by the fellow I’m hosting today: Stuart Ralph. I haven’t had the pleasure of meeting Stu in person, but I feel like I know him, at least a little, through his project. Thanks for being here, Stu, and for your thoughtful answers!

Q. You’re behind the incredibly uplifting “The OCD Stories: Real stories that educate and inspire those with OCD.” You interview individuals with OCD as well as therapists on your podcast, and you also publish personal essays. How did this all come about?

A. Firstly, thank you. Praise is always appreciated. It came about from my own desire to read uplifting stories. As part of my recovery I started blogging on stuartralph.com/blog with the aim of sharing what was and wasn’t working for me. I found myself during spikes, as a lot of us do searching the internet for stories that relate to my own, so I could be reassured that my symptoms were OCD and not real desires, i.e., to leave my partner, or having sexually assaulted someone etc. I realized that these stories were scattered all over the internet, and I wanted to create a website where stories about OCD could live in one place. I wanted our stories to not be a source of reassurance as we all know this won’t help in the long term, but a source of inspiration and education. A place where people could talk about their struggles but also what is helping them. Recovery-focused stories. The OCD Stories was launched. A few months later I decided I needed to do more, so I created The OCD Stories podcast. I wanted to interview the greatest minds in mental health to offer the listeners good advice and also look into what the future holds for OCD treatment.

Q.  It took me years and years to figure out I had OCD, and I finally got help when it seemed that my obsessions had spilled into everything and made being around even my own family difficult. How did you realize you might have OCD, and why did you seek help? Did you have any sort of rock bottom experience, or certain obsessions that seemed particularly stubborn?

A. Like yourself it took me years also, 10 to be precise. I always felt like I was living a kind of super hero life. Not because I had any cool super powers but because I had to spend so much of my childhood hiding my weird behaviors and disturbing thoughts. I felt that if I spoke up and told my family I would be locked away for being a “nutter.” Stigma was paralyzing me and prolonging my pain even at that early age and I wasn’t aware of it. Harm OCD was my main problem growing up. Constantly have to do checking compulsions, mental checking, repetitive actions, and symmetry compulsions to stop my family being killed, innocent children in Africa being harmed or me being lost in another dimension alone. It was all very painful and frustrating, especially as I didn’t know what was happening. It got critical when BDD came into my life. I was obsessed that I was a freak because of my appearance, and that no one would ever love me. This went on for a couple years in my early teens, to the point of contemplating suicide. Most of my day was based around hiding my ears, including growing my hair and using hair products to stop it moving as to not reveal my ears. My mind at school was focused on playing small and not showing people the freak I was. In hindsight I love who I am inside and out, but at the time my mind made me believe the most horrible things. I eventually had enough and wanted to find an answer. I searched Google for answers typing in my symptoms to get multiple web pages describing the mental health condition OCD. The more I read the more I could relate. It was if they were writing about my own life. This was such a relief. I was 16/17 at this point. I finally got up the courage to call my doctor and make an appointment. I went through the NHS, and saw a psychologist. But didn’t do proper treatment until I was 27. The NHS is great, at the time mental health resources I believe were limited. As my compulsions at the time weren’t dominating every waking second I was asked to give it some time and read some OCD self-help books. If they didn’t work, I was recommended to come back and they would put me through CBT. I think my positive attitude didn’t help because I downplayed my symptoms to the psychiatrist, wanting to look like I had some control over my life. I continued to struggle for another 10 years, OCD ebbing and flowing in strength. At 27 I decided enough was enough and went privately to treat my OCD. I saw one peer support coach (Mark Freeman) and two therapists, all having positive impacts on my OCD and overall happiness.


Q. Once you were diagnosed, how did you feel, and how did you go about treating your OCD symptoms?

A. I felt normal for the first time in my life. Understanding what it was allowed me to see OCD as the problem not me, this allowed me to speak to my parents about it. Sharing for the first time with them what had been going on in my mind. My mum went shopping with me to buy some books on CBT and OCD, it was awkward for me, but nice to not be alone any more. As for treatment I will offer advice from when I was 27 because this is when I faced my bully. I did ERP to get rid of my physical compulsions. But in my twenties my mental compulsions were stronger and more entangled than any outward compulsions, so ERP helped but I thought acceptance and commitment therapy (ACT) helped me more with the obsessions. Learning to distance myself from the thoughts and accept the anxiety and doubts, really allowed them to slowly dissipate. Adjusting my diet and exercise also helped in my recovery.

Q. Part of your stated mission is “to be a beacon of light in the moments of darkness we have all had to endure, as a result of OCD.” The stories you’ve shared has certainly achieved that. How has helping others affected your life and your own recovery?

A. Anne Frank said “No one has ever become poor by giving.” Creating this website and podcast has allowed me to connect with so many great people, and help those who need it. The OCD Stories has given me a community which is important for recovery and a purpose.

Q. Have any of the stories especially resonated with you? 

A. I love every story I’ve had on the website. Each one has something that I can relate to, or that touches me profoundly. One person shared that a therapist had told her she was a hopeless case. That shook me. In this day and age, such statements should not be made. We must never remove hope from the equation. On a more positive note, most of the stories end on a very selfless note offering hope to the reader — this always moves me. It is a testament to the great people OCD sufferers are.

Q. What advice can you share with people with OCD who may not be comfortable sharing their stories yet? 

A. We publish stories anonymously sometimes. It’s OK if you’re not ready to use your name, I get that it is scary and can be a risk. Sharing your story I have found to be such a cathartic experience. Putting it down on paper (or word) can help you make sense of it all, and by focusing on helping the reader it can inspire you. If you wanted to share your story, I’d be happy to publish it anonymously. Or just write it for yourself as part of the healing process.

Q. You’ve been chipping away at the stigma around OCD. If you could erase one misconception with the swipe of your finger, what would it be?

A. I would swipe away the ignorance around mixing OCD with OCPD.

Q. And since this isn’t a perfect world, what can we do to erase that misconception with the tools we actually have, bit by bit?

A. I come from a media and marketing background. Marketing is all about perception. Same for OCD, or anything really. We can change the perception of OCD by writing, recording, and sharing accurate and positive information about OCD. So we effectively drown out all the hyped-up nonsense and misconceptions around OCD. We as sufferers, and/or therapists, can achieve this by writing blog posts, doing podcasts, filming videos, sharing our stories, or writing articles on OCD. We can even correct people when they misunderstand what OCD is in front of us. But if we do this we must remember to remain humble, and kind in our correction of their innocently naive blunder.

Q. If you could share just one piece of advice with others who have OCD, what would it be?

A. Learn to love the question mark. When we learn to live with the doubt and uncertainty and slowly become OK with not knowing, we drain OCD of all the power it has over us. It’s not easy, but it’s possible.

Tuesday Q&A: Stephen Smith


steveheadshotOne of the best things about being an advocate for OCD awareness is connecting with other people who have OCD and hearing their stories, especially when they’ve decided to turn their pain into something positive by helping others.

In this Q&A, I get to learn about something I know very little about: The invention of an app! It was only a couple of years ago that people teased me about my phone, saying things like, “Your phone has buttons!” That’s why I’m so excited to host Stephen Smith, who created nOCD, an OCD therapy app for people who may not have easy access to treatment, maybe because they live in a remote area or they can’t afford to regularly see a therapist. I’m also excited because I didn’t follow a traditional treatment plan myself, and I understand how difficult it can be to find the right treatment provider. Stephen set out to tear down barriers to effective treatment — and from here I’ll let him explain why, and how.

Q. First things first: Like most of my Q&A guests, you have OCD. How long did you experience symptoms before you were diagnosed? And what made you realize that you may have the disorder?

A: In retrospect, I remember experiencing OCD symptoms in high school. I always feared that I would suddenly get cancer, sometimes to the point where I would make my family take me to the hospital. However, I didn’t realize my symptoms were OCD-related until after my sophomore year of college. I started having very intense, uncharacteristic intrusive thoughts (with mental compulsions), different from the cancer-related ones I experienced before, so I knew something wasn’t right. After a certain point, the thoughts became so extreme that I knew I probably needed to find help. Unfortunately, due to the lack of awareness for OCD and OCD treatment, it took me five different tries to find someone who specialized in OCD. Before I found an OCD specialist, I had one clinician regularly tell me to snap a rubber band on my wrist after every intrusive thought. Another advised me to move away from my family, since they believed my childhood was the root of the problem (bad advice for treating OCD).

Q. How did you feel about the diagnosis, and how did you go about treating your OCD?

A: I felt very relieved about my diagnosis, because it provided me with much needed hope. Before being diagnosed, I constantly felt depressed and anxious, thinking to myself “What have I become?” When I learned about OCD treatment, I read that other people were going through the exact same thing, and most importantly, many of them got much better.


Q. Why did you create the nOCD app?

A: I created nOCD in light of the problems I faced: (1) finding treatment and (2) going through treatment. Like I mentioned before, it took me five tries to actually find a clinician who was well versed and experienced in clinically effective OCD treatment — exposure and response prevention (ERP) and mindfulness-based therapy. That’s why the app incorporates both ERP and mindfulness-based therapy.

Q. Tell us how the app works.

A. nOCD can help patients mindfully respond to a sudden OCD episode (instead of performing a compulsion) and stick to a structured ERP plan. In the background during use, the app collects objective, real-time data, which can be easily shared with a therapist, family member, etc. The data can then help OCD patients easily explain the details surrounding the war going on inside their head in a non-verbal way, and remember the events that occurred during the week. Lastly, with the new version of nOCD being released in a couple of weeks, patients can engage in auto-generated ERP exercises that naturally will take them through their hierarchies. For instance, during each exercise, users can create in app loop tapes, scripts, drawings, etc. Their therapist can even customize their different exposures for them.

Q. I grew up in a relatively small town and wasn’t diagnosed with OCD until I was in my late 20s and living in Minneapolis. If I still lived in my hometown, I’m sure I’d have to travel to see a therapist. Was this a factor you considered when developing the app? What else went into the decision? 

A: I was very fortunate that I didn’t have to drive very far to see an OCD specialist. If I did, I can guarantee you that I wouldn’t be able to seek treatment due to the combined cost of travel and therapy. At the time, I was barely able to even pay for the local OCD specialist. Each week, I had to work overtime as a trainer/custodian at a San Antonio (Texas) boxing gym, since each therapy session cost me $195. Many who aren’t familiar with OCD treatment may ask: Why was the cost so expensive? The answer: the only OCD specialist in my area was “out of network.” Because these specialists are in such high demand (given the cruel nature of OCD), many can afford to charge whatever price they fancy. It’s another problem in OCD therapy that must be solved, and I am confident technology will eventually solve it. Although nOCD currently has many tools that improves the connection between remote patients and their OCD therapist, we still are innovating keeping both virtual reality and teletherapy in mind.


Q. Since you’ve launched this business and there have been press releases about it, I assume pretty much everyone in your life knows you have OCD. Was that always the case? Did you feel comfortable telling friends and family about the disorder?

A: Before I launched nOCD, only a handful of people knew that I have obsessive-compulsive disorder. Now that many know about my journey through treatment, a countless number of people have approached me looking for help. I admire their courage, considering how difficult it is to talk about both OCD-related thoughts and actions. When I was going through treatment, I remember only telling a select number of my family and friends, because I didn’t want my reputation to change amongst the rest of the social circle. Being an NCAA athlete, I’m living proof that mental illness doesn’t discriminate, just like other chronic illnesses. I don’t fit the stereotypical mold of someone who struggles with mental illness that is commonly (and oftentimes subtly) pictured by our media, but really no one does, since mental illness affects all types of people.

Q. If you could share just one piece of advice with others who have OCD, what would it be?

A: If you have OCD, you must know that so many people in the OCD community improve each day. OCD is the farthest thing from a death sentence, and in fact, the skills that you’ll acquire in ERP will make you more resilient than ever before. For example, before I severely struggled with OCD, I would always get incredibly nervous before playing football games, giving speeches, and meeting new people. After going through ERP successfully, I am now rarely phased by any of these three things. I now feel as if no challenge is too great!

Tuesday Q&A: Kat Hashway



Welcome to Tuesday Q&A, dear readers!

Last month at the OCD Conference in Chicago, I ran into a family from my home state, a mother and her daughter who has OCD. As her mom and I chatted, this 9-year-old girl grew antsy — her mom gave me a look and said, “She saw a YouTube vlogger earlier, and we’re trying to track her down.”

That celebrity vlogger was Kat! She’s spreading awareness on her channel, ShalomAleichem {Mental Health Vlogs}, and gaining fans as she does it. It’s so important for kids and teens to see people their age have OCD, too, and are okay talking about it.

Q. You’re 19 years old, and although I hesitate to say you’re lucky to already know you have OCD, it’s really common for people to go years, even decades, before they’re diagnosed. When did you first start experiencing OCD symptoms?

A. So, I was an anxious child for as long as I can remember, but I didn’t experience severe OCD symptoms until I was 15. Before then, my anxiety symptoms were more like generalized anxiety disorder (GAD). Although, after being diagnosed with OCD, I can look back and see many symptoms that were classic OCD symptoms. I understand why you wouldn’t want to say I’m “lucky to know” I have OCD, but I do feel incredibly lucky that I found out I had OCD and got treatment so fast. At the time, I had no idea how long it took most people to get a diagnosis and treatment. To me, one month for a diagnosis and six months for treatment was way too long. It was long enough to make a significant impact on my life, so I guess that’s why.

Q. How long after the onset of symptoms were you diagnosed? Was it fairly obvious to your parents that something was going on?

A. I started experiencing severe harm OCD around August 2012. I knew something was wrong because I never experienced anything like those thoughts before! However, my parents didn’t know anything was wrong at first. Eventually my distress became known to them because I would get so upset every time I got an intrusive thought. I used to cry and tell my mom I didn’t want to live if it meant having these thoughts. They knew something was seriously wrong, but they didn’t know what. There was no way I would have told them the content of the thoughts either.

When I first started experiencing severe OCD symptoms, I had a therapist for depression and anxiety, but I was terrified to tell her about these thoughts. I really thought I was crazy, or schizophrenic. I never once thought it could have been OCD. After a month of severe symptoms, I realized I couldn’t go on like this and decided to tell my therapist about what I was experiencing. She didn’t know what it was either. Long story short, I ended up inpatient in a mental hospital and that’s where I was diagnosed with OCD (and I’m so thankful for that!). After discharge from the hospital, I saw someone who claimed to be a CBT therapist, who turned out to not be a CBT therapist and didn’t know how to treat OCD. It took six months for me to get into proper CBT with exposure and response prevention, in the form of an OCD intensive outpatient program at the hospital I had been inpatient at. That’s when things started turning around.


Q. You’re already so active in spreading awareness about OCD, with your own YouTube channel, ShalomAleichem {Mental Health Vlogs}. How did you decide you wanted to help others in this way?

A. Having to wait six months for treatment and experiencing the lack of knowledge on OCD by professionals was what first made me want to raise awareness. When I learned it can often take decades to find treatment, I wanted to help even more. No one deserves to have decades of hiding with this illness! I also recalled going online to see if anyone else had symptoms like I did and hardly finding anything. (Although, that’s probably when I found you! Yay!) Much of what I did find gave bad advice on how to treat the thoughts. After the end of my stay in the intensive outpatient program, I was very comfortable with practicing ERP. I knew the key to getting rid of the thoughts. So when I went online for support a year later, I thought, “Wouldn’t it be great to have a video blogger who made ‘classic vlogging style’ videos, with content that supported recovery from OCD? Something that would appeal to people like the kids and adolescents who I met in the program?” Then I realized, hey, I could do that! By that point I did find a few vloggers and bloggers who spoke about lesser-known types of OCD, but it seemed most didn’t appeal to young people, and many of those that did appeal to young people were still giving bad advice (by “bad advice” I mean using avoidance, distraction, and accommodating compulsions).

Q. But that’s not all. You also have a blog called Do An Exposure! As someone who’s shared personal details of my own journey with OCD — and usually tearfully — I imagine that just doing your vlog and blog feel like exposures sometime. Has sharing your story helped you on your path to recovery?

A. Short answer, yes. It totally has. When I couldn’t tell my intrusive thoughts to my therapists, I was able to say them to strangers online. It served as a great exposure opportunity. There were times where I was very uncomfortable, but I did it anyway because I knew that others who had those symptoms needed to hear it. I wanted to be what I was looking for when I was first diagnosed. Maybe I would have been diagnosed and got treatment sooner if I had known I was dealing with a treatable illness, I wasn’t just going “crazy.” Now I feel so much more comfortable talking about my thoughts in all situations — depending on the circumstances, of course.

Q. Any advice for someone who wants to share their story, whether through YouTube videos, a blog, or another medium?

A. I’m having trouble thinking of anything besides just do it. The more we talk about the taboo topics, not just of taboo obsessions but OCD in general, the more we break the stigma around mental illness. The more we break stigma, the more people who need help get help. The more people who need support get support. And the more people who don’t understand, get a chance to understand what life is really like for people who have mental illness and OCD. It’s honestly life changing to hear people tell you because of you, they have hope or feel less alone. Advocating has probably had more of an impact on me than it’s had on other people. If you’re scared to do it for someone else, do it for you. As a chance to expose or track your recovery progress. I’m convinced that when anyone shares their story, it helps people.


Q. So you’ve put yourself out there and have lots of adoring fans. Have you sat down in more intimate settings with friends and family to talk about your OCD? How did you tell loved ones about what was going on?

A. It’s funny because I don’t see myself as having adoring fans. But at OCD events, I usually have a few people who come up to me and say hi. The little girl was probably the cutest experience I’ve had yet!

I’m very guilty of avoiding vulnerability, which is shocking, I know. But because of that, I usually don’t talk about the specifics of my OCD in person unless someone is curious. The moment I sort of “came out” to my real life friends and family about having OCD happened on Facebook. It was after I went to my OCD program’s reunion and felt inspired by the recovery of my fellow patients. So I posted my story, disguised as an inspirational message to cover the vulnerability, and I got only positive responses. That’s the thing about confiding in people, we usually anticipate it to be worse than it actually is.

Q. Let’s face it, all OCD symptoms are pretty terrible. But are there any in particular that you’ve had an especially hard time with?

A. The symptoms I had the hardest time with were the ones that brought my faith and morals into the mix. I don’t count harm thoughts because they morphed into Scrupulosity shortly after my diagnosis. However, the Scrupulosity was a huge issue and barrier to treatment. OCD was so intertwined in my faith that I couldn’t tell the voice of God from the voice of OCD, and that was terrifying. It also led to me doing every compulsion because how could I say no to “God”? It really debilitated me to the point where I was essentially homebound before I went to the the OCD program. Eventually though, once I was able to separate my OCD from my God and treat OCD as an illness and not a spiritual problem, I was able to get better.

The second one that has given me a very hard time is the sexual obsessions. They have mostly mental compulsions and are almost a spin-off of the harm obsessions. They both have the same pattern of focusing on a few people and avoidance being the main ritual. With sexual obsessions, it’s taken a lot of exposure and response prevention to get to this point. Before I couldn’t talk about them and every trigger caused extreme anxiety. Now, most days the thoughts come in as just an annoyance. However, I’m still doing exposures for this and have some cognitive distortions to work through. Just ask my therapist! The amount of times she’s had to tell me “thoughts are just thoughts” is ridiculous.


Q.  You’re pretty open about how important your faith is to you. How does it factor into your journey with OCD?

A. My faith has been something solid in my life since I first struggled with depression at age 12. OCD was definitely a challenge to it since OCD got so intertwined into my faith. However, I can’t help but see it as proof everything happens for a reason. Going through OCD feels like going through Hell, but it’s brought me to a time in my life where I’m truly happy. I believe God wants us to be brave. And through therapy I learned how to be brave in the midst of fear, when anxiety has inhibited me most of my life before now. Because of my struggle, I learned a lot about my faith and about myself. Before OCD, I would have been content with faulty theology that helped my OCD grow, now I know better. It may sound really silly and that’s okay, but I think God was guiding me through it all.

Q. Your Weird Thoughts Thursday on Twitter is such a great idea — any weird thoughts that have really stood out to you?

A. I think my favorite thought I’ve heard was from last Thursday, “If I post my #WeirdThoughtsThursday, it will come true!” Seeing that people are using Weird Thoughts Thursday as an exposure as well as support makes me so happy! On the support side, I think my favorite part of Weird Thoughts Thursday is when someone says a “weird” OCD thought and everyone replies saying, “I’ve had that too!”

Q. If you could share just one piece of advice with others who have OCD, what would it be?

A. My biggest advice to someone who has OCD would be, don’t wait to get help because you’re afraid. Generally speaking, the sooner you get help, the easier it is to recover. I know it’s hard, but it’s so worth it! Don’t let anxiety tell you what to do, anxiety is just a big bully. And how do you get rid of bullies? Ignore them! Don’t play into their game. And, you know, get help from authorities or therapists.

Tuesday Q&A: Aaron Harvey


AaronHeadShotOn March 21, I shared a link to IntrusiveThoughts.org on my author Facebook page and said, “I am so excited about this new website!” And I really was. Not only was it all about the intrusive thoughts that plague those of us with OCD, it mentioned all the secret shameful ones like pedophilia and harm, and — and! — it’s gorgeous. Looks shouldn’t matter, but let’s face it: Important, life-saving information served up in an attractive package certainly doesn’t hurt.

Aaron Harvey is the man behind the site, and I’m honored to host him today. We met in person at the OCD Conference in July (haven’t I told you like a million times that you need to go to the conference?), and he was warm, smart, funny, and open. He’s been talking about things many of us are still keeping to ourselves. But Aaron doesn’t want anyone else to hurt the way he hurt for so long, and that’s what keeps him talking and what inspired him to start IntrusiveThoughts.org. Thank you, Aaron, for being here today and for everything you’ve done to help people with OCD.

Q. After suffering in silence and confusion for decades, you finally realized that your disturbing intrusive thoughts were symptoms of OCD, a treatable disorder. Unfortunately, you’re not alone in this — too many people go undiagnosed and untreated for too long. What sets you apart, though, is that you almost immediately undertook an ambitious project to spread awareness so no one else would have to suffer as long as you had. Where did your idea for IntrusiveThoughts.org come from?

A. I lived silently in fear for two decades unaware that I had a mental disorder. In March 2014, my mental health had really deteriorated. So I finally got the strength to search “violent thoughts” online. Within seconds, I read a list of symptoms for Pure O. My heart was on the floor. I couldn’t believe what I was reading. Every symptom. Check. Check. Check. In that brief moment, I was relieved and terrified at the same time. What did this mean? The symptom list confirmed to me that I was an animal. As I continued my search, I found an article on the Guardian. The author, Rose Bretecher, humanized the suffering of OCD in an absolutely humble, honest, and beautiful way.

For the next six months, I would only share my disorder with a few close friends and family. And I could only do it by sending them the link and saying, this is what I’ve been dealing with since a child. I had to read it verbatim to my parents because I was too emotional to use my own words.

That’s when I knew I needed to build something that helped to humanize the experience. And two years to the day following my Google search, I launched IntrusiveThoughts.org. I wanted to find people who might be suffering from OCD, but are unaware, just like me. I wanted to build a site that brought comfort to people seeking their symptoms, and push them on a path to treatment, offsite.

My goal was simple. Save one life. Prevent one person from self-medicating. Reach a younger audience to help them live a normal life one that, sadly and admittedly, I did not have.

Q. If you could pinpoint one thing you want IntrusiveThoughts.org visitors to walk away with, what would that be — and does it depend on who the visitor is?

A. I want sufferers to realize they have a chance at happiness. I want sufferers and their friends and families to be able to relate to the disorder, understand its brevity, and utilize it as a jumping off point for treatment. You are not alone. And you are no more likely than anyone else to act on your thoughts.

Q. You and I both struggled with taboo obsessions, those sticky intrusive thoughts that are really embarrassing and difficult to talk about. But you were candid and brave much sooner after diagnosis than I was. How did you find the courage to tell wide-reaching outlets such as Self, Cosmopolitanand Fast Company about your violent and sexual thoughts? And what kind of response have you gotten from readers, friends, and family?

A. I remember the night before the site launched, my tell-all article was queued up to launch in FastCompany.com and soon my family, friends, clients and employees would know what’s in my head. That night, I really started to question what I was doing. And if it was worth it or not. But ultimately, I laddered back up to my mission to build awareness and advocacy. With my role in the advertising industry, I have a unique opportunity to use my skills to spread that message. So I basically said, fuck it. And let Fast Co know to run the article.

As I started to receive more inquiries about more taboo topics like sex, it certainly was getting even more personal and invasive. But ultimately, I have to ladder back up to my mission — build awareness and advocacy. Sex is a huge part of life. And sex can be an extreme challenge for people with OCD. It’s an imperative that we discuss these taboo topics to help those suffering know that they are not alone, there are tips and tricks to improve your sexual experiences, and you can have an open dialogue with your partner.

Q. I mentioned that you were diagnosed decades into your struggle with OCD. What’s your first memory of an obsession or a compulsion, and what finally tipped you off to the idea that what you had been going through was OCD?

A. In hindsight, I see there were so many now! But, the first intrusive thought I really struggled with was when I would pray. I grew up in a Christian household, and at night, at 12 or 13, I would say the Lord’s Prayer as I went to sleep. As I reached the end of the prayer, I would have an intrusive thought of my cumming on Jesus’ face. Shocked and horrified, I would beg for forgiveness and repeat the prayer until I could make it all the way through. I remember each time I would get close to the end of the prayer I would be like “OK, almost there,” and then sure enough, I would cum on Jesus’ face.

From there, the sexually related OCD thoughts really took off. I thought I was a pedophile at 13.

Q. A question I often get is “How did you tell your family about your diagnosis?” So I’ll pose this to you as well. Do you have any tips to share with my readers?

A. I flew to Florida to see my family. We sat on the back porch — Mom, Dad, and I. I pulled up my phone and said, hey, I’ve been dealing with something for a long time. I could see the mood got serious. I was choking up a bit trying to tell them. So I pulled up Rose’s article in the Guardian, and I started to read it line by line. As I hit a particular tough spot, I started to lose it a bit. It wasn’t until I read the entire article that I could start to tell them about how my experiences are different than Rose’s experiences. I told them not to mention it to me or ask me how I’m doing because it’ll just make it worse. In hindsight, I really needed to be more educated.

The home page of IntrusiveThoughts.org is supposed to do one thing: sum up the most important notes of the disorder in a way that is serious but digestible. I hope people who are nervous to tell their loved ones can say, hey, check out this link, this is what I think I’m going through.


Q. In your interview with Cosmopolitan, you said, “My experience with OCD is that your intrusive thoughts will try to disrupt the most beautiful moments in your life.” I always say OCD is tricky, and it’s a bastard, too: You had upsetting, graphic sexual and violent thoughts while you had sex with your ex-wife, and this took a toll on your relationship. What advice do you have for someone with similar obsessions who may be avoiding intimacy because of them? 

A. Transparency. That’s the most important thing. Because of my distance due to fears of intrusive thoughts, my ex thought there was something wrong with her. It led her down a depressive cycle. It’s really important to share these thoughts with your partner. Beyond that, there are tips and tricks that I’ve learned that might help people. Mindfulness. Focus on the breath. When thoughts get disruptive and start to avalanche, pull your partner closer, go slow, engage in foreplay, live in the moment, don’t worry about the end result. Mindfulness is really key to being able to enjoy a sexual experience. To let the thoughts pass and stay in the present.

Q. So many people with OCD unknowingly undergo the wrong treatment for OCD, usually “talk” therapy where they’re asked to delve into their childhood to determine where this mess all came from. You’re currently practicing exposure and response prevention (ERP) with a therapist. How did you find someone qualified to help you tackle your OCD symptoms, and how did you determine that they were indeed qualified? 

A. The sad part is, you really don’t know. Sure, you can read someone’s credentials on a website where they state “OCD” as part of their specialty, but you really don’t know. You must be educated first. You are the CEO of your recovery. Not some doctor or therapist.

All that said, you do have a few starting points as Dr. Phillipson points out in the OCD3 video series. (1) Work with a behavioral psychologist. (2) Work with someone who specializes in OCD, someone with many cases under their belt, a track record, not a generalist. (3) Interview them to make sure they speak intelligently about OCD, OCD treatment, and ERP. Again, this step requires you to be educated first.

IOCDF has a directory of OCD specialists in the US.

Also, it’s important to note that many people suffering from OCD may also be suffering from depression, generalized anxiety disorder, addiction, body dysmorphia, etc. It’s critical that your behavioral psychologist actually understands these elements and how to build a treatment plan for you.

Q. How are you doing now, a few years after you were diagnosed? I often tell people that the goal of treatment shouldn’t be to never, ever have a bad thought again, because it’s simply not realistic. Do you still experience intrusive thoughts?

A. I struggle every day. Some days worse than others. No day is easy. I have pretty severe depression as a result of two decades of self-hatred. I have very little self-worth. There are no accomplishments that help to prove me wrong — whether it’s owning an agency, starting a non-profit, etc. So my treatment is very challenging, because when you have harm OCD where you’re plagued with constant thoughts of self-harm, and you also have depression, the combination can be very dangerous.

Q. If you could share just one piece of advice with others with OCD, what would it be?

A. Let people in on your secret.