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Tuesday Q&A: Liz Atkin


I’m old enough to remember what life was like before easy access to the Internet, and especially before social media. Since platforms like Facebook and Twitter have exploded, I’ve had the opportunity to connect with people I’d never have even heard of before.

One of those people is today’s guest, Liz Atkin. I ran across her on Twitter and was instantly intrigued. When Liz’s hands are idle, she’ll compulsively pick at her skin, which is a problem. But she eventually came up with a brilliant solution: Occupy her hands by creating charcoal drawings on any newspaper that’s lying around on her commute (usually on the London Underground). Read on for more about this creative advocate from across the pond!

You struggled with compulsive skin picking for more than 20 years. Can you tell us more about compulsive skin picking?

Compulsive skin picking (CSP), also known as dermatillomania or excoriation, is a complex physical and mental disorder. Picking at skin is a very normal human behavior, but CSP is categorized by the repetitive picking at skin to the extent that significant damage is caused, and it impacts on a person’s daily functioning. It’s not known why humans develop this disorder. For some, environmental factors influence the development of skin picking or hair pulling disorders; others have hereditary links where family members may pick. CSP may start by picking at an existing blemish, or even at healthy skin, in an attempt to smooth it out or make it feel more “normal,” but the picking leads to scabs, infections, and eventually scarring, which causes a vicious cycle where the behavior loops. They are part of a family of disorders know as body-focused repetitive behaviors, which includes trichotillomania, the hair pulling disorder.

There is currently no cure, but a lot of important research into skin picking and hair pulling disorders is currently happening in the U.S. In the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, the diagnostic criteria includes “recurrent skin picking that results in skin lesions, repeated attempts to stop the behavior, the symptoms cause clinically significant distress or impairment, the symptoms not being caused by a substance or medical, or dermatological condition and the symptoms not being better explained by another psychiatric disorder.” Medication helps many, and cognitive-behavioral therapy (CBT) or habit reversal therapy are also valuable treatment options if you’re suffering.

Did you know you had a disorder, or did you think it was a bad habit you couldn’t overcome? When did you realize what was actually going on? 

I suffered in silence for a very long time, probably 20 years or more, hiding the behavior every day. I had no idea it was a disorder. I was 29 when I first had the courage to Google it.

I would experience an urge to pick, but sometimes it was very unconscious. This could affect different parts of my body: I’d pick my face, my hands, my back and shoulders, my arms, my feet. Many people think it would hurt, but actually it’s the opposite. It’s not about harming the body intentionally; those of us with skin picking are trying to perfect the skin by picking off a blemish. That urge to pick could be overwhelming, and although the damage could be very severe with my skin raw and bleeding, the gratification to pick could cause me to carry out the behavior over and over again. Sometimes I’d zone out and lose hours picking in front of the mirror. “Zoning out” could actually feel soothing, but the after-effects were extremely hard to cope withnot just the marks, wounds, and scars, but the guilt and shame of the disorder dominated my life. It also developed into something I did subconsciously; some nights I would pick until the early hours of the morning. I would even pick in my sleep.

I masked and covered the illness from those closest to me, wearing clothes that concealed the parts of my body covered in scabs and scars, and using make-up to mask it on my face. The guilt, shame, embarrassment, and anxiety was terrible. Eventually I had no choice really but to try and help myself because it was destroying me. So what do you do with a disorder that is both a conscious urge and an unconscious behavior? That’s where my journey with art began.

I had always had a fascination for the body and performance, so I studied theater. This led me to complete a BA in drama, and then a master’s in dance.

During the MA in dance, I began exploring and studying my disorder. I’d never had therapy at that point, so a class exercise looking at everyday movement patterns as choreography led me to look at the body-focused repetitive behavior of my skin picking. Over the course of two years I slowly began to make photographic artworks directly about how it felt to live with this disorder. I’ve been working with textural materials like latex, clay, and acrylic paint to transform the skin over the last 10 years. It has helped me recover and learn to come to terms with the illness.

More recently, drawing has become one of the best ways of all to channel the disorder and transform it.

You’ve largely overcome your compulsive skin picking. One rather amazing technique that has worked for you is what you call compulsive charcoal—you make charcoal drawings to occupy your hands. Tell us more! How did it come about?

I had CBT therapy during an episode of severe depression and chronic anxiety in 2014 with nearly a year off work. My skin picking had returned very badly. It was during this time my #CompulsiveCharcoal began by accident. A friend gave me a box of charcoal sticks as a present, and to stave off panic attacks and keep me focused during long commutes on the London Underground, I started drawing in sketchbooks. I noticed how relaxed and focused it helped me be. It was during one of those trips I ran out of pages, so I picked up and graffitied a discarded copy of the Metro free newspaper that was on a seat beside me. I posted a photo of the drawing on Instagram, and it generated a lot of positive reactions. It’s a kind of graffiti recycling, drawing onto adverts or images in the newspapers and upcycling them.

Now, it’s a thing I do on newspapers, wherever I am in the world. I draw on planes, trains, and buses. This isn’t just some kind of art project for the sake of it. Whenever I am sedentary, skin picking is something my hands will do automatically, so to stop that from happening, I draw.

This has has taken me on adventures to the other side of the world, to the M1 Singapore Fringe Festival. My two-week trip in January 2017 was sponsored by British Council, and I created more than 300 free #CompulsiveCharcoal drawings, and gave a series of public talks on skin picking and art at National University of Singapore, Lasalle College of the Arts, and Khoo Teck Puat Hospital. A film about my trip by Channel News Asia was viewed by 150,000 in the first 24 hours.

You’ve combined your artistic talent with spreading awareness of body-focused repetitive behaviors (BFRBs), but your advocacy isn’t limited to your artwork. What else have you done to draw more attention to these often misunderstood disorders?

Much of this has been a happy accident. I didn’t train as an artist; I certainly had no idea how transformative art was going to be in my life. Much of it has evolved organically through the act of doing it. Because of the transformative experiences I have had with art, it is now a fully connected part of my life. I teach art and drama to all ages. I work in hospitals, hospices, prisons, universities, and schools, approaching creativity as a hugely important tool to help others. Art is my greatest tool for recovery.

I had no idea what an incredible tool drawing would be to stop the CSP, but it’s become the greatest solution. Someone told me recently the drawings I create even look very itchy, which seemed like a very appropriate way to describe them! They are very quick. Each one takes just one minute; the speed and energy of the mark-making is absolutely akin to the skin picking. It helps me refocus my hands and fingers, be really present in the moment, and transform the urge of skin picking into a different repetitive action. Since I don’t really need the drawings (I just need to do them), I began handing them to curious passengers on the London Underground who’d caught my eye and obviously wondered why I was furiously drawing at that speed in the middle of a packed carriage. Acts of kindness and advocacy wherever I am.

I now speak out for mental illness, educating others and reducing stigma. Whenever I am asked, I try to say yes! That includes public talks, specialist commissions, residencies, and exhibitions. My story and art have been profiled in interviews for BBC Breakfast, BBC World Service Outlook, BBC Radio 4 Woman’s Hour, BBC Radio London, London Live, Al Jazeera TV, and BBC Arabic. Other media interviews include Huffington Post, Mashable, Metro, i Newspaper, The Mighty, The Daily Bruin Los Angeles, The Londonist, Bloomberg Business China, VICE Magazine UK, Diva Magazine, and Like-Minded Magazine, Amsterdam.

In 2016 I was announced as a World Health Innovation Ambassador. I was the keynote speaker at the 2016 Global Conference in USA for TLC Foundation for Skin Picking and Hair Pulling Disorders. My international advocacy includes a week in California in October 2015 speaking to junior doctors at Keck School of Medicine at University of Southern California, University of California: Santa Barbara, and to Skin Picking patients at The OCD Center of Los Angeles. In 2017 I took part in the M1 Singapore Fringe Festival: Art & Skin sponsored by British Council, delivering a series of lectures and art workshops at hospitals and universities, and creating more than 400 of my free #CompulsiveCharcoal drawings on public transport.

In the UK I have spoken on compulsive skin picking, art, and mental health for two TEDx events, Wellcome Collection, Critical Voices, Depression Alliance, Bethlem Gallery, Dragon Café/Mental Fight Club, Royal Society of Public Health, and Changing Minds at Southbank Centre. I was a speaker at the Global Conference for the Body Dysmorphia Foundation 2016 and Diversity Health Conference at University of Central Lancaster. 

Do you have advice for someone who’d like to get into advocacy but isn’t sure how? 

For a long time I didn’t feel able to say my artwork was about skin picking. That all changed for me in 2013 when I was offered an exhibition at Bethlem Gallery at Bethlem Royal Hospital in the UK, which is one of the oldest psychiatric hospitals in the world. It was a moment where I felt able to tell the truth, and I found it very liberating. I have met many others who have also started to share their lived experience and I think it can really help people to connect with others and contribute to shifting change in how mental illness is perceived.

I realized that one encounter, one moment of identification with someone, whether that’s in real life or on social media like Twitter or Facebook, could cause a powerful ripple effect. It might prompt someone to seek help, get treatment, and start their own recovery journey. It also connects our experiences; I no longer feel alone in this disorder. I now speak out about this skin picking every day. It’s been a way to take back control of my life, but also I’ve found strength in being an advocate for well-being and mental health; it’s a way to share hope and recovery. Many people chat to me on the tube; little conversations about mental health happen with strangers about my graffiti drawings. I do up to 60 a day; in 2 years, I’ve given away up to 16,000 free drawings. That’s 16,000 mental health conversations and from that many thousands of people who may live with, or know someone who lives with, mental illness, or potentially CSP. Every drawing was a moment of connection, of advocacy for mental health, and a chance to let others know I am drawing because of CSP and I now carry free postcards to explain the disorder.

What do you consider the most common misconception people have about skin picking?

Many people think it’s just a bad habit, or something they ought to be able to just stop doing. The reality is many of us are hardwired with this genetically. Knowing that has helped with self-acceptance; it has helped me come to terms with it a lot. It’s not my fault, and not something I can just switch off or stop doing; skin picking movement patterns have been part of me for more than 30 years, so for me it has been about finding a way to change that, to rethink it, look after myself. Finding art, a personalized recovery tool, has been invaluable. It probably saved my life when I was at my lowest point with severe depression and chronic anxiety.

Many others think it’s a form of self-harm, which is a real misconception. These are disorders in their own right, with very different characteristics, and the intention often starts with wanting to smooth or perfect the skin, not to cause a wound.

It’s also worth saying 1 in 25 are thought to suffer from a Body Focussed Repetitive Behavior – these are common not strange, but many dismiss them as just a bad habit.

If you could share just one piece of advice with others who struggle with compulsive skin picking, what would it be?

Find your personal patternwhen do you pick, where, and how. For me bathroom routines and mirrors were tricky. So setting a timer to limit how long I’d be in the bathroom was useful. I knew it happened when sedentary or bored; I’d pick my fingers traveling on the train, and I’ve learned that keeping my skin moisturized does help me not scan for scabs or irregularities to pick at. And as it would happen when stressed or anxious, I feel I found a soothing activityfor me it’s drawing, which can occupy my hands, calm my mind, and engage my imagination. These have been hugely helpful. Finding activities with repetition seem to really work for me; the disorder functions through touch, gaze, and movement, so finding other activities to engage hands and motion are useful!


Tuesday Q&A: Ryan Bernstein


Happy Tuesday! Today I’m hosting an incredible young man. At just 17 years old, Ryan Bernstein is shooting for the stars, working hard to spread awareness of obsessive-compulsive disorder. He’s writing a book, guys, and it isn’t even for personal gain! He plans to donate the proceeds to the International OCD Foundation, and he needs our help (you’ll see why!). Read his inspirational story of grappling with symptoms, getting a diagnosis, and getting better. Thanks for being here, Ryan!

Although you now know, at age 17, that you have OCD, it wasn’t so long ago that you felt anxious but didn’t know why. When were you diagnosed, and how did you realize what you were going through might be OCD? 

During my pre-teens I saw different doctors but they just chalked up my symptoms to becoming a teen. It took about 10 years to finally figure it out. I was recently diagnosed at age 15. It was really difficult to experience so much anxiety and not understand why for such a long period of time.

I was fortunate to go to a public high school that had some support systems in place, and when I was a freshman, I experienced a terrible panic attack. The social worker really helped me put a name to what I had been experiencing for so many years. I began seeing a therapist who specialized in OCD and anxiety and worked with him for about a year. I also did a lot of research on my own to learn more about OCD. The International OCD Foundation and their resources were invaluable for me.

Did your parents recognize any symptoms of OCD, or did it come as a surprise to them? How did you tell them what was going on?

My parents were very supportive but none of us knew why I was so anxious. It wasn’t until I started to develop more visible rituals that my mom thought it might be OCD.

I relied on my mom a lot and always shared with her what I was feeling. Sometimes it was really difficult to find the words, though, because everything felt so awful.

Once we had a diagnosis and learned more about OCD, the pieces fell into place. What my mom had seen as random acts, and what I had felt, now had a structure and made so much more sense.

Having OCD—especially undiagnosed OCD—can make a person feel alone. Did you talk to any friends about it? Do you have any advice for my readers who might not know how to broach the subject with their peers?

I felt very alone. I think that part of the problem with any mental illness is that you really look OK. In addition, there is a stigma associated with it so people tend to isolate. I thought I was the only person suffering with this problem.

Initially I did not seek out my friends. I was worried about how I would be perceived in my peer group. I wish I had opened up because it would have taken away some of the pressure I was feeling.

I remember having a bad anxiety attack one day at school and I just couldn’t get to class. I finally got up the courage to blurt out the words, “I’m really anxious right now.” To my surprise a few friends asked if they could help me.

After that experience I began to realize that I could ask for help. At first it was difficult. I still have a sheet titled, “Some Things that People with Anxiety want their Friends to Know.” It has really useful phrases that helped me communicate what I was feeling. I began to tell more of my friends about my anxiety and it felt good. I realized that by being more open it helped me feel less afraid. In doing so, I met others who were also struggling.

My advice is to not be afraid. Try to be as open and honest as you can with your friends. I know it is not easy. Find a time that works for both of you and have a one-on-one conversation with each of your friends. I found that if I asked for support my friends were happy to give it. Of course, there are those who will tease, and bully, and although I have experienced that, and it is not pleasant, I believe that closing yourself off from support is worse than taking a risk and being honest.

I have since started a support group at my school called “Hand in Hand.” We meet each week to discuss coping skills, and share our thoughts and feelings in a safe environment. It has been very well received, and I encourage other teens to start a support group if there isn’t one in the area.

What can teachers and school counselors do to help?

We are living in a time where diversity and disability is celebrated. I think that teachers and counselors need to learn more about OCD and respect that students are trying but it can be difficult for them. Avoid embarrassment. Be patient. Listen. Advocate for them.

Sometimes all students need is to feel accepted and understood even if it might not make sense. Expect some disorganization and forgetfulness- overwhelming anxiety can be distracting. Find the good and be compassionate.

What do you consider the biggest misconception about OCD, and how can we help shed light on it?

I think that the biggest misconception about OCD is that it is so narrowly defined as a hand washing, or perfectionist, or highly-organized-everything-in-its-place issue. I think that many people believe it’s not really an illness, that it can be controlled, and that it doesn’t really negatively affect a person’s life. I’m here to tell you emphatically that it does.

I think that the best thing that we can do as a community is to educate. Share your story to change the way people see OCD and by doing so you can inspire others to do the same. This is the very reason why I decided to write my book.

Tell us more about the book you’re writing, OCD to Me: An Anthology of Anxieties. What inspired you to start this project?

I was inspired to write a book a few years ago when I was feeling really lost and alone. I didn’t think anyone understood what I was experiencing. It would have been so helpful and empowering for me to read about others who were also struggling. Too often books are written about overcoming an illness. I wanted to create a book that could not only help people with OCD but educate people about OCD through a first-hand account of what having OCD feels like.

I wanted to provide a platform for people’s unique stories to be heard. I know that often people don’t want to share their personal information so I came up with the idea of an anonymous survey. People can answer four questions about their experience. I will then edit responses for clarity and put them in the book.

Here’s the survey.

My goal is to get at least 100 responses. I am halfway there! I want to get as many stories as possible to show that there isn’t one face to OCD. It afflicts people from every possible walk of life. I want to show how diverse as well as debilitating OCD can be, then maybe we can change the image of OCD, and the belief that mental illness only affects certain kinds of people.

My book will contain three sections. “OCD Defined” written by an expert in the field, “Practical Advice,” and “Amazing Personal Stories.” I will then find a publisher who believes in this project and get the book published.

All proceeds from the sale of OCD to Me: An Anthology of Anxieties will be donated to the International OCD Foundation in order to help broaden awareness and provide support to the OCD community. I want people to know about OCD, and I want to let people know they are not alone.

I hope your readers will help me by taking the survey!

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

It’s possible to overcome OCD. Don’t give up! It takes a lot of time, energy, and determination but you can do it. I remember thinking that I would never get better but I am now and I think the key was not being afraid to try. It is very frightening to face your fears, counterintuitive in fact, but take micro-steps and celebrate any success. Of course there will be setbacks so don’t be afraid to ask for help. People can’t support what they don’t understand. Be willing to share, speak up, get the word out. Together we can educate our communities.

Tuesday Q&A: Kate Stiffler


Welcome Kate Stiffler! Kate, a mother of five kids, has found yoga to be tremendously helpful in dealing with her OCD. After years of struggling and mostly keeping her diagnosis to herself, Kate is ready to share her story. I couldn’t be more pleased to help her spread the word of hope and recovery. Thank you for being here, Kate!

When were you diagnosed with OCD, and how long did you have symptoms before that diagnosis? 

I was diagnosed with OCD in my 30s approximately 12 years after I started having recognizable symptoms of the disorder. Signs of OCD can be traced back to my early childhood where I do remember walking around saying to people “Everything is going to be OK.”

OCD is still misunderstood, and oftentimes people with OCD say they were surprised by their diagnosis because they thought it was all about excessive washing or checking, behaviors they never engaged in themselves. What made you think you might have OCD? 

I realized I had OCD when the obsessions/intrusions kept recurring over and over again no matter how much I tried to ignore or outthink them. I remember sitting in my bed crying in my pillow because they just did not make sense yet I could not stop them from entering my mind. The doubts, the “what if’s” they just intruded on every aspect of my life. The earlier years of my OCD were marked with clear compulsions such as washing my hands until they bled and taking showers that lasted for at least an hour. Over the years, the compulsions shifted to more internal neutralizing of the thoughts and checking behaviors.

Once you knew what was actually going on, did you tell loved ones right away? How did you decide who to tell, and how to tell them?

I really kept my OCD to myself for most of my early adulthood. My college years and graduate school years were years that I really did not know what was going on. I simply thought the OCD was a character flaw of mine and that I really was the terrible person the OCD made myself out to be. These years were marked with great sadness, confusion and isolation. It was not until years later that I sought formal help for my OCD. I entered many various forms of therapy from outpatient to inpatient at McLean. To this day there are only a few people who really know what is going on with my disorder, primarily my husband along with all the therapists I have encountered along the way.  

You own a yoga studio, and practicing yoga has been an important component in the recovery process. What is it about yoga that makes it so beneficial for our mental health in general, and OCD specifically?

Yoga saves lives. Yoga saved my life. I found yoga as a result of one of my earlier therapists recommending that I try it. I had  no idea what yoga was and had never taken a class before. After researching my city for yoga studios, I landed in a Hot Yoga class.  From the moment I stepped on the yoga mat my life changed. Yoga was a place I felt at peace. Yoga was a place I could go inside of myself. Yoga was a time I could reflect on my life and begin to declutter from useless garbage that kept me weighted down physically, emotionally, and spiritually. Yoga was a release for me. It allowed me to take time to myself to create space and just be. The daily practice of yoga allowed me evolve as a human being and begin to separate myself from my thoughts. As you know, with OCD this can be a huge help in the process of recovery. Yoga also taught me how to be more comfortable in the uncomfortable. It trained me to stay in situations and work through them rather than running away from them. These tools have been invaluable to me as a person living with OCD.

Katie, I can’t even touch my toes, so I feel anxious about taking a yoga class. How can I ease into it and experience the benefits?

Just show up! This is what I tell everyone who says the same thing. Yoga is not about looking perfect or even touching your toes. Yoga is SO much more than that! The first thing I would say to someone like you is just meet yourself where you are right now. Talk to qualified instructors and let them guide you into the class that would work best for you. There are many different kinds of yoga. Make sure you are educated on the different styles of yoga and what they entail and then choose which one resonates with your goals. Everyone can do yoga! That is the beautiful thing about it. There is something for everyone!

What else has helped you deal with OCD? Have you tried anything you wouldn’t do again, or something you were surprised to find therapeutic? 

I would say that connecting with others who have OCD has been most helpful for me. It wasn’t until fairly recently that I really started to understand that no one can do the work for you. It is up to you to be your own cheerleader and advocate. I have begun networking with other advocates in the OCD community to help spread awareness and share my story in hopes of helping others realize we are all in this together. Support and education are really important tools in getting the disorder under control. There is not really anything I wouldn’t do again. I have to say however that I do not like ERP. I found that it made my anxiety spike doing the exposures and I had a really hard time understanding the role of ERP. My brain could not understand for a really long time why I would want to do something that I am scared to death of. My brain wanted to run far away from the fears not towards them. I had a hard time separating the process with myself. In my mind, I felt like if I did the exposures it meant that I either wanted to really do the bad thing or I was the bad thing. I had a really hard time separating them. I wish I had been more educated on the ERP process from the get-go and taught that these things are very common misconceptions  that others also experience. I think if I was told this early on, it would have saved me a lot of time that I spent trying to figure it out on my own over the course of many more years. I have found writing to be very therapeutic for my OCD recovery. Sharing my thoughts with others, recognizing that I am not alone has been very meaningful for me.

If you could offer just one piece of advice to others with OCD, what would it be?

You are going to be OK! Trust yourself. Love yourself. Be yourself. There is no one out there like you. Talk to other people who have OCD. You are not alone. OCD is manageable and you can live a very happy and successful life with OCD. There are going to be good days and not so good days. Don’t give up. Keep remembering its up to you what you want to do with your life. You can gain control over the OCD. Support and education go a very long way in recovery. Don’t be ashamed of yourself. Be proud of yourself and all  your efforts. Reach out to others like me and Alison who are here to help support you and cheer you on when you feel you cannot do it for yourself. You are a gift to this world. Never forget that you matter!

Tuesday Q&A: Michael Jenike


IMG_2367[1]In 2014 I attended my first OCD Conference, and I kept hearing snippets of conversation about this man, Dr. Michael Jenike. It was “Jenike this” and “Jenike that.” I finally asked my hotel roommate who Jenike was. “You haven’t met Jenike?!”

In 2013 Dr. Jenike had granted me permission to use his very helpful checklist for finding an effective therapist in my book, so when I met him at the 2015 conference, I thanked him. After all I had heard about him, I thought he’d have an intimidating, scholarly presence. Nope. Not so much. He said, “Where’s my cut of the royalties?”

Dr. Jenike is brilliant, yes, and he’s helped countless people gain control over OCD. But he’s really goofy, too. Going to this year’s conference in Chicago? See for yourself.

You’re kind of a big deal in the OCD community. You founded the Obsessive-Compulsive Disorder Institute (OCDI) at McLean Hospital, a world-renowned residential treatment program. How did that all come about?

After treating thousands of patients for a number of years, we realized that some patients did not improve despite medications and behavior therapy. I thought that perhaps a residential OCD facility where patients could stay for long periods of time might make a difference. We planned to do the same treatments, just for a longer period of time and more intensely. McLean OCD Institute has now been open around 20 years and the demand for services has not let up.

When you decided to go into psychiatry, did you know you’d end up treating OCD? If not, when and how did you decide to focus on this particular disorder?

I had no idea about OCD. In medical school I had a classmate who would miss many classes because he was in the bathroom washing his hands. I had no idea why he was doing that. I was going to be a surgeon and planned on going to Johns Hopkins for surgery. In medical school I had an inspiring teacher, Dr. Ronald Krug, who thought I would like to take a psychiatry elective with a local psychiatrist. This was an amazing experience and I could see that if you were aggressively working to help people with real expectations that many got better or improved markedly. Prior to that elective, I mostly saw psychiatrists as talkers and not result oriented in medical school. I was always a results oriented sort of person, thus my interest in surgery. However, there were some awesome psychiatry lectures in medical school and I thought it would be great to learn psychiatry, but I had no intention of becoming a psychiatrist. I asked the doctor in charge of the elective and Dr. Krug where the best place to learn psychiatry was, and they said Massachusetts General Hospital (MGH). I applied and was accepted for training and finished up there and stayed on the faculty ever since.

While in residency at MGH I saw a few OCD patients and was fascinated with these patients who would do crazy and seemingly purposeless rituals for hours despite being totally sane. They were really nice people but they were suffering as much as anyone I had ever seen. I was always interested in lessening people’s suffering so this intrigued me. Also, the total lack of knowledge in my supervisors about OCD was astounding. No one thought they could be helped. OCD became my hobby. During these early years of my career, I ran the MGH inpatient psychiatric department and founded and ran the MGH dementia clinic for about 15 years. I mostly published in geriatrics and dementia with occasional OCD papers. We thought OCD was very rare. Out of the blue, the Larry King TV show called me and wanted me to go on the show with an OCD patient. Their request was for me to discuss where you could shoot yourself to improve mental illness. There had been a report of a young man with depression and OCD who shot himself in the front of his head and he recovered and his OCD and depression were gone. After that, we got over a hundred calls a day for a long while. The OCD disorder that we felt was very rare was obviously not uncommon. Soon after a large study came out showing a prevalence of OCD of over 1 percent of the population. With the onslaught of OCD patients I gradually shifted to mostly doing OCD clinical work and research. Over the next few decades we branched into all kinds of clinical trials, genetic studies, neuroimaging studies, and innovative treatments. The staff grew to over a hundred people, and we now have a huge clinic at MGH headed by Dr. Sabine Wilhelm that specializes in OCD and also related disorders like body dysmorphic disorder, trichotillomania, Tourette syndrome, et cetera.


You contributed to Life in Rewind: The Story of a Young Courageous Man Who Persevered Over OCD and the Harvard Doctor Who Broke All the Rules to Help Him. That’s a long subtitle—did you really break all the rules, and did doing so change the course of OCD treatment for generations to come?

I don’t really worry about the rules if they get in the way of patient care. I was told when I was in training that psychiatrists are not allowed to make house calls but my patients were stuck and could not get out of the house so I saw no other way. I don’t break rules just to break them (I hope). It seemed silly to have a nonsense rule that prevented very ill patients from getting help. We have systematically set up a group of master’s-level clinicians to go into people’s homes to treat severely ill patients. I do think this is a model for the country but funding is a problem. I have gotten around this by very generous donations from a few people that allow me to pay these clinicians well to do this work. I still spend much of my time out of the office seeing people on their turf. I find this fun and exciting, and the results can be fantastic. Ed Zine, the person in the book you mention, is doing great. He has two teenage daughters and a wonderful wife. He has gone back to school to become a therapist and wants to help OCD patients. He will talk to patients on the phone to help motivate them. Could anything be more rewarding?

Jeff Szymanski said he credits you with setting the tone of the annual OCD Conferences because you were always willing to answer questions after your sessions—once for 12 hours. I’ll quote him here from the wrap-up podcast he did after last year’s conference: “If you see Dr. Jenike, shake his hand. He really set that norm of, ‘You’re here, you’re working, you’re going to be generous.'” Did these early experiences surprise you, or did they confirm what you already knew, that people desperately needed help and resources for OCD?

That was always my style. I gave the keynote talk at the Boston annual conference and after there were many questions. I told the audience I would stay till all their questions were answered. After a while they moved us to another room, and I was there over 12 hours, and it was a totally amazing experience. Each question is worth taking seriously as sometimes you answer a question or send a patient to a good clinician and that few minutes changes their or their children’s lives forever. Each year at the annual conference people come up to me and report how well they are doing. Life is short; if I can make such a difference it makes what I do totally worthwhile. This is such rewarding work.

Through my advocacy work I’ve met lots of other people with OCD, and so many of them either refuse to take medication in the first place or decide to go off it because they see it as a crutch. Say you have a patient you think could benefit from medication, but she is either afraid or thinks taking medication is a sign of weakness. What would you tell her?

This is always a hard problem. Sometimes medication helps a lot and people decide to stop it even though they are not having much in terms of side effects. If people get well after long periods of illness, there are demands on them. Work. Family. Dating. Et cetera. It is sometimes easier just to go back to the old and “comfortable” illness. Some people almost see OCD as an old friend. I explain that using meds for OCD is really no different from a diabetic using pills or insulin to control their sugar. The person has an illness and the medication can help them lead a more normal life.

Who can benefit from a residential program like OCDI? Would an individual with OCD enroll only after exhausting medication and outpatient ERP?

Usually outpatient treatment like behavior therapy and medications are tried before the OCDI. Most patients at the OCDI have not done well with these treatments.


I have what some people call pure O; I mostly struggle with obsessions and don’t perform physical compulsions such as hand-washing. How would my OCD be treated at OCDI? 

Patients with so-called pure O all have compulsions but the compulsions are mental. If you look at it like that, the treatments are similar. They can read Lee Baer’s book The Imp of the Mind for detailed instructions on how to manage the thoughts. Everyone has intrusive thoughts but they pass through the brain quickly if you don’t have OCD. If you have OCD, the thoughts can get stuck and a person will ruminate about the thought; what it means, are they a bad person, et cetera. The pure O patient has to learn to just let the thoughts be there and not analyze or ritualize about the thought. Similar to a person who washes away contaminants; they just contaminate themselves and then not wash.

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

Don’t let your OCD go untreated. Thousands of people just accept OCD and don’t take advantage of treatments that may do a world of good. OCD sucks the enjoyment out of life and life is meant to be enjoyed. It is short (I realize this more now that I am older) and there is no cosmic requirement for lifelong suffering.

Learning to Live with Obsessive-Compulsive Disorder


Have you heard of the Health Stories Project? It’s a wonderful resource I recently learned about when they asked to interview me about my experience with OCD. They made me feel completely at ease, and I didn’t feel at all like they thought my admittedly terrible obsessions made me terrible.

Consider joining their community for support from others. I’ve joined!

Tuesday Q&A: Margaret Sisson


image (3)Many of us in the OCD advocacy community got into it because we have OCD ourselves. Margaret Sisson became an advocate because her son Riley had OCD. She has done so much to spread awareness, not just about OCD but addiction as well. Even after Riley’s tragic death in 2014 Margaret has continued to go above and beyond and advocate for people with OCD, and her goal is to keep Riley’s legacy alive — she founded Riley’s Wish Foundation and presented on his behalf at the OCD Conference in Boston.

As much as Riley struggled with both OCD and addiction, he never stopped trying to educate others. He presented on several panels at the OCD Conference and he was working toward his Master’s degree in counseling. Riley was hilarious. OCD is hard. It’s draining. It’s depressing. Somehow Riley was able to joke through much of that pain and made others laugh.

Thanks, Margaret, for continuing to be a voice for Riley, and for us.

You were given the IOCDF Hero Award at the 2014 OCD Conference. Much of the work you were doing in the OCD community was on behalf of your son Riley, who had OCD. How did you decide to get involved in advocacy?

When Riley and I went for the first time to the conference in Chicago we both felt we found support, and for once others understood! I decided that by helping and being an advocate, I not only helped others but also Riley. I was very humbled to receive the Hero Award. Most importantly, I was able to tell Riley that it was for him! He was my hero!

It must have been painful to see your child suffer through this illness, and to hear some of the unpleasant details, including those about his addiction. How did you push past the pain in order to help Riley?

Watching your child suffer is very difficult no matter how old they are. But the more I educated myself and researched OCD the more I felt I could help him. I needed to understand what he was going through, and that way I was more equipped to get him to the right treatment.

I think it must be challenging for parents to help young adult children who are striking out on their own and becoming more independent, and perhaps more resistant to parental guidance.

It is hard to help an adult child with OCD. You are encouraging independence but oftentimes that is hard because of their struggles. My advice for any parent whose adult child is going off to college or living independently is setting up a good support team. Colleges are starting to implement programs that help students who struggle with mental health and addiction. The programs are designed to be a community for students and they provide the peer support and accountability necessary to enable sustained recovery and mental health counseling. This gives the students the ability to pursue an academic and social experience in higher education. The program also provides support and encouragement to give back to the community.


Riley self-medicated, and unfortunately he became addicted, leading to a dual diagnosis of OCD and addiction. How did the diagnoses affect each other, and how did you and Riley approach the dual diagnosis?

Unfortunately, when struggling with substance abuse it became a vicious cycle. Treat one and the other goes untreated and so on. Fortunately, residential facilities are now implementing treatment together. Let me share information from Riley’s presentation on OCD and addiction at the 2014 OCD Conference:

“Substance use disorders (SUDs) are categorized by the dysfunctional use of a substance causing significant impairment in functionality or marked distress. SUDs generally include cravings in between instances of using, obsessions around wanting to use, and the compulsive ingesting of substances. The diagnostic criteria for SUDs, as outlined in the Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV), are separated into categories of abuse and dependence depending on the presence of withdrawal symptoms when substance(s) are absent from the body (4th ed.; DSM-IV; American Psychiatric Association, 1994).

Both OCD and SUDs involve obsessions and compulsions. OCD can manifest in a variety of ways. With OCD, obsessions generally coincide with the fear that something bad will happen if compulsions are not carried out. With SUDs, triggers can include emotions, cognitive distortions, false beliefs, and other people, places, and things. Addicts/alcoholics generally obsess about using. With SUDs, rituals include finding ways to use, using, and preparing to use again. With OCD, rituals can include a variety of behaviors and thoughts. Using drugs and/or alcohol can be one of them.

Those with obsessive-compulsive disorder often know that their obsessions and compulsions are not based in reality. They often know that what they’re doing isn’t realistic, that it doesn’t make sense. They often see a decline in functioning, they’re aware of the time they are wasting, and they experience distress. However, they still continue to obsess and carry out the associated compulsions.

Those with SUDs are not so different. Addicts/alcoholics often see the negative consequences associated with their use, and they know the high isn’t worth it. They see clear indications of dysfunction, physical illness, distress, etc. However, they too struggle to stop themselves without help. Many scholars have collected data indicating a strong positive correlation between OCD and SUDs.”

How old was Riley when he was diagnosed with OCD? How did you realize that OCD might be behind his symptoms? Once you knew it was OCD how did you go about treating it?

Riley was diagnosed with OCD when he was 12. My dad was a pediatrician and he actually diagnosed him after I explained his symptoms. It started with hand washing and extreme anxiety over school. The unfortunate part was he spent years receiving the wrong therapy. Talk therapy was all he received for over five years. Not until his senior year did we finally find a therapist who was experienced in ERP. I think that is so important for parents to find the right therapy. The IOCDF is a great resource for families.

Let’s say someone reading my blog also has a dual diagnosis of OCD and addiction and hasn’t told her parents about either illness. How should she approach the topic with them?

This is what I would like to concentrate on through Riley’s Wish Foundation. I want to continue raising awareness and educating others about OCD and addiction. I think we made great headway at the IOCDF conference this year. I was fortunate enough to speak on three panels that discussed OCD and addiction and was so encouraged with the feedback we received. The plan would be to set up a mini track for next year’s conference that continued discussing the dual diagnosis and how best we can help those who struggle with the dual diagnosis.

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I met you and Riley at the 2014 conference in L.A., and he was a hoot! I was practically in tears when he presented at a panel about preventing relapse; I was cracking up. I was shocked when I learned of his death less than two months later. Your life was turned upside down, but you have been determined to carry on Riley’s legacy and help others in need. You started a Facebook page called Riley’s Wish, you presented at many sessions at this year’s conference in Boston, and now you’ve officially launched Riley’s Wish Foundation. How can others get involved to help spread Riley’s legacy or advocate?

I think being an advocate is a real personal decision. Some people are not comfortable telling their own story and that is OK! Being an advocate can also be getting involved with your local affiliate, starting a support group, or getting involved with the IOCDF conference. The conference was life changing for both Riley and myself. I will never forget the support we received at our first conference. After that, Riley and I both felt compelled to help. Riley started the first OCD/addiction support group with Jared Kant. The next year he did his own panel with several of the top doctors. He started the movement to talk about OCD and addiction. He wanted so much to figure out how to help himself so he could go out and help others. I feel that is what I’m supposed to help with now. That way I can honor Riley’s legacy and help others. I think he would be pleased.

If you could share just one piece of advice with parents whose children have OCD, what would it be?

Educate yourself. The better you understand OCD the more equipped you will be to help. Educate yourself about ERP and the ongoing research on OCD. As a parent, you are your child’s best advocate! And some personal advice: Humor and laughter are good medicine, too. Riley would be the first to tell you that!

Join a Live Chat with Dr. Lee Baer


Want to participate in a live chat with Dr. Lee Baer, author of The Imp of the Mind?

Here’s how! is having their first live discussion held in the Unacceptable Intrusive Obsessions Forum on Wednesday, May 13, at 7 p.m. EST. If you or someone you know is interested in joining the support groups, please select the “I’d like to join a Forum” page from the “Peer Support Forums” menu at

Dr. Baer will answer your questions about inappropriate or taboo intrusive thoughts. I wish this had been available to me when I was really struggling–I hope you take advantage! Dr. Baer is incredible.

Please register before May 13 so we know whether we have an interest to proceed! To participate, just register, and then log in at 7 p.m. (EST) on May 13 and go to the Unacceptable Intrusive Obsessions Forum.