Alison Dotson's Blog, page 11

Tuesday Q&A: Jonathan Grayson

Maybe 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 is an apt title for this charming yet 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

Kirsten 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

I’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

One 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

On 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, Cosmopolitan, and 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.

Tuesday Q&A: Sean Shinnock

It’s the Tuesday of OCD Conference week, and I’m excited to be hosting someone you’ll have a chance to meet, learn from, and be inspired by this weekend. Sean has taken huge leaps in his recovery in the past few years, moving out of his dad’s house to residential treatment in Boston to living on his own and taking life by the horns — working full-time, pursuing art, and not taking anything for granted. I love his take on mindfulness, self-compassion, and personal growth, and I think you will, too.

Q. Like so many other people with OCD, it took years before you realized what was really going on. You were diagnosed in 2012, but you’d had symptoms long before that. How far back do you remember having obsessions?

A. I remember having obsessions all the way back to when I was 10 years old, maybe younger. I worried constantly about my mother’s health and global warming!

Q. What led you to finally seek help and get a diagnosis?

A. The spring after I turned 32, I had gotten to the point where I was everything but catatonic. I couldn’t leave my chair, my room, my house. I would stay still for hours locked in obsessions, ritualizing to get out of them. During any periods of rational thought or normalcy (I jokingly called these times my “awakenings,” a term I took from a Robin Williams movie I enjoy), I would either ponder suicide or fantasize about finding a magic cure. I finally succumbed to my very really desire to live, and asked my dad for help. I didn’t know what to do, but I knew that I  had to do something, anything. We eventually made an appointment for an intensive two-day neuropsych evaluation at the Lindner Center of Hope near Cincinnati, Ohio, about 120 miles away.

Q. Once you knew it was OCD, how did you feel? Were you comfortable sharing your diagnosis with loved ones?

A. Honestly, I didn’t have much of a reaction,  I had done research and knew what OCD was and even kinda self-diagnosed myself in high school after watching a daytime talk show from the ’90s with a kid on it with OCD. What was really going through my head was: A) OK, now what, I have an official diagnosis, there is no way I can afford therapy, and it probably won’t work anyway.  B) I hope my dad now understands that all my failures weren’t all my fault and C) They missed something, I have something worse, I’m psychotic, they don’t know what is really wrong with me (this was my OCD talking).

I am fortunate with the friends and family I had when I was first diagnosed, so talking to my close loved ones was not a problem and I received a lot of support from them. It was the community outside my inner circle that I always felt awkward or shameful around. As my confidence grew and as I got better and better, I became more at ease talking about my struggles with more and more people. I really do like the chance to compassionately teach someone about OCD and mental health awareness if they are having a hard time understanding it. 

Q. You eventually went to residential treatment at McLean in Boston. How did you decide to take this step?

A. I had told myself when I first started down my path of healing, that I would do whatever it takes to get better. So there was no way I was going to take a recommendation from an OCD expert home with me and just sit on it. I was really open to any suggestions of treatment and had mentally prepared myself for treatment. With the initial formal diagnosis from Dr. Charles Brady at the Lindner Center, we were told that my case was so severe that even the Lindner Center’s own OCD residential program was probably not enough and that I would most likely need a more intensive, longer stay at a larger hospital. When my dad and I were suggested some programs that were known nationally, we began to do some research. We finally came to the decision for me to attend the OCDI at McLean Hospital in Boston, Massachusetts. Again, for me, the decision to get intensive treatment was not all that hard to make. I was really scared, I was filled with uncertainties as you could probably guess, but I had been through so much, I was at my worst, I was willing to do anything to get my life back.

Q. Residential treatment can be really beneficial for some people, but it can also be difficult to transition back to daily life. How did you maintain the progress you’d made after you left McLean?

A. One of the hardest things that I have had to do, and I assume that this is hard for other “warriors” (term I use for those on the path of healing), is planning to discharge from a residential facility (sometimes called aftercare work), and then transitioning from residential life to the realities of the real world. The recipe for maintaining progress is a very complicated, multi-layered, and subjective experience for each resident. I attended the OCDI twice, once in 2012 and then again for the winter of 2014-15.

Each stay, in my eyes, was completely successful, and changed my life in its own unique way. The first stay, my team and I really focused on getting myself mobile again by attacking the obvious, more visible rituals I was struggling with. The second stay, my team really got me acquainted with acceptance and commitment therapy (ACT) and mindfulness on a more personal level and I got a chance to do a lot more expressive art therapy. By doing this, I was able to give more to the existential, big picture and personality-driven obsessions that I was really struggling with at my core. So, with that being said, I had two different experiences transitioning to the real world. The first time I left residential treatment I had come a long way in my therapy. However, due to not having the proper resources in my hometown and having some life curve balls thrown at me, the issues that my team and I were not able to address during the first stay escalated and got worse.

The real story, though, is how I handled the transition my second time around. This time, I was dead set on doing well outside of treatment and I set myself up to do so. In addition to the exposure and response prevention (ERP), ACT, and mindfulness therapy I received at the OCDI, I really started working on my systematic problems with “perfectionism” and self-confidence. I began to view my thoughts in different ways and I started to allow myself to become less rigid in how I achieved my goals. By ditching the “fixed” mindset I had carried with me most of my life, and by developing a “growth” mindset, I was able to keep the momentum I had built during therapy and continue to heal while navigating the peaks and valleys of real life. In my case, my ultimate exposure was indeed life. So, in order to really transition well and grow the way that I needed to, I had to make some tough decisions. I had to expose myself to taking risks and living life on my own. I knew that the only way that I was going to grow and become wise was to have the life experiences therapy had prepared me for. It made no sense to get therapy and then avoid my fears by going back to the same situation that I was in.

So, the last two weeks of my residential stay, I started to look for people who wanted to sub-lease their apartment in the dead of winter. I applied to over 20 places for employment, and I was adamant about keeping my behavioral therapist that had helped me so much. The therapy part was very important to me because I had grown tired of dealing with BTs who were sub-par or who did not understand my case. I felt I deserved better, and this was the only area I stayed pretty rigid on. So, by the last day of my treatment I had found an apartment, I got a low-level part-time job, and I had my therapist.

On March 1, 2015, I had officially moved from Ohio to Boston. In order to make this transition work, I decided that I had to make promises to myself and then actually keep them. I knew that I wanted to fill my calendar and stay busy because I knew that if I was bored or static I could start getting back into my head. I promised myself to work 40 hours a week, and I did. I promised myself I wouldn’t miss any therapy appointments, and I didn’t. I promised myself I would volunteer, and I did, and then I promised myself I would take my art to new levels, and I did. I kept pushing myself to do the things that were valuable to me and that would be productive in my life. I quit drinking and I started to save my money. I attended meet-ups and even ran a figurative art night. I attempted art projects that I would have initially avoided, and I continually set daily and weekly goals for myself. In general, I knew that I had big-picture ideas, but the only way that I was going achieve anything was to take small baby steps and build a path of confidence filled with small victories and lessons learned by mistakes. By adhering to this philosophy I was able to overcome setbacks more easily and calm down quicker when I panicked about not being able to handle what I had gotten myself into. As I progressed, I noticed that the valleys became less deep and the peaks were more attainable. Transitioning can be tough, but by continuing to hold yourself accountable, the life you want can be within your reach. I would like to add, though, that my transition was really made possible by my support team, which includes my family, close friends, and therapists. I have been very fortunate with that. 

Q. You once told me that ERP is great, but you found ACT to be even more helpful. Tell us more about that. How does ACT work?

A. ERP really helped throughout the entirety of my therapy; however, what has really made a significant impact on the core of my thought processes has been ACT. ACT is a therapeutic model based on mindfulness and Eastern philosophies, and it has really challenged me to change the perspectives I’ve had on my thoughts. Instead of struggling with my thoughts and negative emotions I learned that I had the power to give them meaning. I learned that I could have compassion for these thoughts and view them as exactly what they were, just thoughts entering and exiting my mind. I started to allow them space by using a technique called “expansion” and I started to not judge them by ceasing to give them attention. ACT has really helped with my own self-confidence and has really allowed me to make strides in my own personal growth.   

Q. We’re presenting together at the OCD Conference, on a panel about taboo intrusive thoughts. I’ve had other types of obsessions, but I found the taboo thoughts the hardest to get over. What can you tell us about your intrusive thoughts and how you’ve handled them?

A. I have struggled with intrusive thoughts my entire life and they probably started before I was even a teenager. The content of my intrusive thoughts has changed and evolved throughout the years but has primarily been centered around harm, sexual deviance, homosexuality, scrupulosity, and fears that I may be a sociopath. For twenty-two years, as you may have guessed, I handled the thoughts the only way I knew how, and that was to perform physical and mental rituals or to just flat out avoid certain situations. But as I have gone through therapy, I have been able to view my thoughts in a different way: I am not my thoughts. I have the power to give my thoughts meaning. Everyone has these thoughts and because I’m human, I have these thoughts. What also has had a large impact on me is being part of a community that has had the courage to stand up and talk about their experiences with this disorder, which, in turn, has allowed me to feel welcome and warm and supported and above all else, not alone.  

Q. You’re holding an art event at the OCD Conference,on Friday night, called Draw Your Monster. Why should conference attendees come to this activity? What can they expect?

A. Draw Your Monster will be a fun activity that you can just drop in on and come and go as you please. It is 7 p.m.-8:30 p.m. on Friday night in the Denver/Houston/Kansas City rooms. It is an art activity based on some of the principles I love to talk about, ACT and mindfulness. It is all about acceptance and the commitment to change your perspective on fear with a fun and unique twist. There will be fun stickers to take home with you and a small raffle toward the end. You will receive your own monster lanyard, and if you choose to, can challenge yourself to wear it the rest of the conference. I really wanted to do something creative and expressive, and I wanted attendees to have fun while exposing themselves to their unwanted thoughts by drawing them as monsters! I think expressive art therapy is critical in making people look at the things they are struggling with in new and creative ways. Someone who may not know how to express themselves verbally can now take the chance to overcome fears through art and mindfulness-based experiences. It is so critical for people to learn to overcome their fears by allowing themselves to grow and heal in a way that won’t exhaust them the way that mindlessly struggling with them will. I think that “Draw Your Monster” can be a catalyst for people to start to change their perspectives in a compassionate way. Think: “I will allow my monster to take a seat on my bus; however, I am the bus driver and I will decide where we go.”

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

A. Remember your “Big Picture,” embrace uncertainty, open your mind to the “grays” in life as there is no back and white, remember that you are not alone, don’t be afraid to ask for help, be open with your thoughts and emotions, remember to treat yourself well, notice that you are human, do research and ask questions, force yourself to stay present, be compassionate, take risks, accept love.

That obviously isn’t just one, but all need to be said.

Review of When a Family Member Has OCD

Since I have OCD myself, I’m not the target audience of When a Family Member Has OCD: Mindfulness & Cognitive Behavioral Skills to Help Families Affected by Obsessive-Compulsive Disorder by Jon Hershfield. Loved ones are. That said, I highly recommend this book for both family members and individuals with OCD.

Using anecdotes, charts, and bulleted lists, Hershfield does an incredible job breaking down this often infuriating and confusing disorder into terms family members and loved ones can understand. In fact, Part 1: Understanding OCD is devoted to explaining what OCD is. Hershfield illustrates for the non-OCD reader what having OCD feels like, with passages such as the following, in which he invites the reader to imagine her worst fear in detail:

Put yourself right at the edge of your fear coming true. How would you feel? How would you know that you felt that way? Consider what your body would tell you. Would your heart be pounding furiously? Would your skin feel clammy or right? How would your stomach feel in that moment? …

Consider now that what you may have felt for that moment is what your family member with OCD feels on a regular basis—anywhere from one hour a day (the OCD diagnostic minimum) to not just every waking moment but also in his dreams.

Wow. This is why this book is so important for loved ones to read — an essentially neutral third party is helping them put themselves in a sufferer’s shoes, without any of the history or baggage of the relationship. You’ll also find Mindfulness Tips peppered throughout the book, and each chapter of parts 1 and 2 ends with two sidebars, Consider This, which helps the reader see obsessions and compulsions through his loved one’s eyes, and Your Struggle, which pinpoints how OCD affects the reader as well as the sufferer.

Hershfield is an expert OCD therapist who gets what his patients go through, but he acknowledges — again and again — how difficult OCD is for the reader, the family member. And with this in mind, he offers concrete tips for not only helping people with OCD cope, but also their loved ones. What should you do, for example, when your spouse asks you to check to make sure the stove is off? Are you helping by taking over this compulsion, or are you hurting? (Spoiler: You’re not helping.) Hershfield feels compassion for everyone in the OCD cycle, and it shows.

While the book is organized in such a way that you can hop around and read a section here and a section there, Hershfield recommends that you read it from beginning to end — and I agree with this recommendation. You may come across a tip in Part 2 that will make more sense if you’ve read Part 1, and you don’t have to page back through trying to find an explanation you’d otherwise already have. And it’s a joy to read! I know I’m a little biased in that I have OCD and consider it an interesting topic, but Hershfield is so engaging you’ll be pulled in and will want to soak up all of his wisdom.