Alison Dotson's Blog, page 14

Tuesday Q&A: Rose Bretecher

Everyone with OCD has at least one thing in common, and I’ve met a few people with OCD over the years who I’ve really connected with. But I feel like I have a lot in common with Rose Bretecher, at least when it comes to our experiences with OCD. I’m not sure about the rest of our lives–she’s British, for one, and she’s met Jake Gyllenhaal. I haven’t crossed that one off my list yet.

Since I relate to so many of Rose’s obsessions, I applaud her especially for being open about them. It’s not easy to talk about pedophelia obsessions, or HOCD, or any taboo obsessions, but Rose lays it all out in her new book, Pure. The subtitle asks, “Have you ever had an inappropriate thought?” Why, yes. Yes, I have. If you have, too, I hope you’ll check out her book as well as her courageous and eye-opening articles in The Guardian, “Pure OCD: A rude awakening” and “A moment that changed me: Charlize Theron’s boobs, my boyfriend, and OCD.”

As painful as some of her obsessions were, she can laugh about them now–at least sometimes. Her attitude toward these taboo obsessions is refreshing and could go a long way toward destigmatizing the disorder.

Q. You were diagnosed in your 20s after years of battling unsettling and unwanted obsessions. Why do you think it took so long for you to realize OCD was to blame for your intrusive thoughts?

A. Because OCD awareness is still very poor. If you’re experiencing disturbing sexual thoughts, and you have no idea that they’re a symptom of OCD, you’re likely to keep them quiet. And sufferers keeping quiet means that awareness remains poor. It’s a very self-defeating illness. Even when I was diagnosed it seemed so ridiculous that I struggled to believe it myself. I hope that kind of incredulity will change over time, as the full spectrum of OCD becomes more widely understood.

Q. Somehow those of us with OCD can hide our torment from even those closest to us, especially when we struggle more with pure O than, say, hand-washing rituals. Were your friends and family members surprised to hear you’d been diagnosed with OCD? How did you tell them?

A. I’d told a couple of people a sugar-coated version of my story, but saying those things out loud proved extremely difficult. In the end I wrote about it for a UK newspaper, so my family and friends were reading about my experiences at the same time as hundreds of thousands of others. It wasn’t a very intimate way of doing it, but it was easier writing those words than saying them.

Q. Although it took longer than you would have liked to get the proper diagnosis, somehow you were clued in to OCD and diagnosed yourself after conducting some Internet research. Unfortunately, your doctor recommended the wrong treatment first, which you said made your OCD worse. Tell us more. How did you ultimately find effective treatment?

A. I was prescribed psychodynamic therapy, which encourages a great deal of soul-searching and exploring your past to try and ease your current suffering. Unfortunately that only served to collude in my compulsive behavior–I’d been soul-searching for an answer to my identity for a decade and had only made myself worse. Sadly, I found effective treatment through trial and error over many years, and a lot of research–I knew what hadn’t worked in the past, so I knew what to avoid. In the end it was CBT with exposure and response prevention (ERP) therapy which saved me.

Q. The title of your book, Pure, is perfect. Not only do you have pure O, but you might say some of your intrusive sexual thoughts aren’t exactly considered pure. In fact, they’re considered pretty taboo. How did you decide to disclose these very personal and painful thoughts in a memoir?

A. I just had this overwhelming feeling that this was a story that needed to be told in a very public way. It seemed scandalously unjust to me that so many people were experiencing this, yet no one felt able to talk about it. So I thought–screw it–let’s do this. If something bad happens, it’s not going to be as bad as a lifetime of keeping secrets. The thoughts themselves didn’t feel too personal, as by then I knew that they didn’t reflect my identity, and that they were being experienced by countless others out there.

Q. You noted in one interview that when you struggled with the pedophilia obsessions you felt like you’d committed an unforgivable sin. How did you realize you had nothing to be sorry for? Was it as simple as being diagnosed with OCD and understanding it was the culprit, the “bad guy,” not you? Or did it take some time to forgive yourself for the thoughts–no matter how unwelcome they had been?

A. It’s strange. I’m 29 now. Those thoughts started 14 years ago and I think my brain has done a very good job of making me forget just how traumatic that time was. The cognitive knowledge I’ve learned has made me realize that thoughts are just thoughts which don’t necessarily reflect intent. Instead of forgiving myself, I learned that there was nothing to forgive.

Q. You also struggled with another very common sexual obsession, homosexual OCD, or HOCD. How did this affect your relationships with men? Did you avoid dating at all during this time?

A. It had a disastrous effect on my relationships with men. I was terrified of commitment. I felt I couldn’t commit to anyone until I was 100% certain that it was the right thing to do. I had this recurring thought–what if I settle down and then years down the line I realize I’ve made a terrible mistake? Ultimately I had to accept that I can never be certain that that won’t happen, and jump in with both feet anyway.

Q. Your boyfriend is very understanding. So many single people with OCD are terrified they’ll never find love, and that someone who doesn’t have OCD couldn’t possibly understand–and I think this is particularly true when they have sexual obsessions. We worry that we’ll be perceived as some sort of sexual deviant. Do you have any advice for my readers who don’t know how to tell a mate what’s going on?

A. I was lucky with my boyfriend. He totally understands. We live in a very accepting social circle. My thoughts about homosexuality didn’t trouble me because I thought they were deviant, they troubled me because I desperately wanted certainty that I couldn’t get. Advice? I guess having a favorite OCD article or definition which you can place in someone’s hands is a good way of expressing what feels like the “unsayable.”

Q. Do you still consider yourself to have OCD even though you’ve largely conquered it?

A. Yes. I’ll always have OCD, and I’ve made my peace with that. I’ve been through effective therapy and I know how to manage new obsessions when they arise.

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

A. Two pieces of advice, if I’m allowed. One: Be cautious whose advice you take. I realize the irony of this sentence as I type it, but OCD is a very complicated illness and non-expert opinions can often be unhelpful. Two: Get a course of ERP combined with CBT–it could turn your life around.

Tuesday Q&A: Clint Malarchuk

Welcome to Tuesday Q&A! This week we’re hearing from Clint Malarchuk, a man who is supposed to be tough, who isn’t supposed to admit to feeling weak–but he’s shattered misconceptions and is speaking out, particularly about his struggle with OCD, to help others.

Clint is tough, by the way. And he’s really, really nice. Really. I introduced myself to him and his wife, Joanie–who’s also incredibly nice–at the OCD Conference in Boston. They were the keynote speakers, so I recognized them from their photo in the conference program–and then everything started to come together and I realized I’d heard of him before.

Maybe you have, too. Clint was an NHL goalie who made headlines and shocked TV viewers in 1989 when his carotid artery was slashed by St. Louis Blues player Steve Tuttle’s blade during an attempt at a goal. (I’ll spare you the link to the video–finding it is up to you.)

Clint is lucky to be alive, and he’s not likely to be forgotten anytime soon. But his legacy will last far beyond this one bizarre, life-threatening incident: He’s become an advocate for mental health awareness. He’s a voice for other men who aren’t comfortable talking about mental illness, and his story of survival–off the ice–serves as an inspiration for us all. He shares it all in his new book, A Matter of Inches: How I Survived in the Crease and Beyond. 

Q. You’re a well-known guy, and as you mentioned in your keynote, it’s largely because you had a horrific accident on live TV. One cause of OCD is a traumatic event. Do you think this accident contributed to the onset of your OCD symptoms? What effect did it have on your day-to-day life?

A. Yes, the trauma really set my OCD off. I certainly already had OCD, though. As a kid I struggled a lot with germs and worrisome thoughts, usually about my mother’s health and safety. I went through different phases of OCD, and even some times where my OCD wasn’t seemingly there. After the accident, my OCD became so magnified: Intrusive thoughts, checking, worrying, along with severe depression. It was difficult to leave the house. This all seemed to worsen within months after the accident.

Q. I was born and raised in Minnesota, and I often say I grew up at the hockey rink. I’ve always thought goalie would be the most stressful position on the team, with the pressure of guarding the net against that tiny puck, hearing the crowd gasp and then groan in unison if it gets through–not to mention the fear of it flying at you with sometimes incredible speed. Did having anxiety affect your performance as a goalie? Did being a goalie cause anxiety?

A. Being a goalie in the NHL is said to be the most stressful positions in sports. All factors considered, I’d have to agree. With stress comes anxiety. Leading up to games my anxiety would increase immensely. As a result, so would my OCD symptoms. After games I would have a small window of reprieve. Looking back, how I managed to play at the highest level is beyond me. OCD did help me with game preparation. The anxiety was at times unbearable before games. Thank God, once the game started, I was able to perform and the anxiety would leave.

Q. Although you were diagnosed with OCD fairly early on you managed to slip through the cracks of the treatment system a bit, getting refills on medication for 12 years without ever seeing a psychiatrist. Knowing what you know now, what would you have done differently following your diagnosis?

A. Not having to really check in with the team doctor was a big downfall for me. I thought as long as I took my medication I would be fine. I could just tell the doctor I need a prescription refill and that was it. Over the years my body got immune to the meds and I definitely got worse. I think it was so gradual that I didn’t realize how bad I was getting. Knowing what I know now, I would have educated myself better and seen a psychiatrist regularly.

Q. You reached a point when you attempted to self-medicate with alcohol, which led to an addiction. Here you were dealing with OCD, PTSD, depression, and addiction. Life had become so unbearable you attempted suicide in 2008. We all have our own ideas of what rock bottom means, but that must have been yours. How did you move on from that moment?

A. Looking back on my life, I would say I hit more than one rock bottom. At certain times my OCD was so unbearable that I just wanted to die. In 2008, my attempted suicide was a result of one of those states of mind. The only difference is that this time I acted on it, and I am very lucky I didn’t die. I ended up getting the real professional help I desperately needed, but I hope others get help before reaching this sort of rock bottom. Acceptance is a huge word here! I had to accept how sick I was. I had to accept things and go forward and get well. I also had to believe that I could get well, and be happy. I had to accept that it would take accountability on my part. I had to do the work that was required on my side.

Q. You weren’t exactly thrilled about checking into treatment, but your wife, Joanie, gave you no choice. What can you tell my readers who may be hesitant about getting the help they need, even if it means residential treatment?

A. Checking into a treatment center was where all this began. I was so scared, the fear was paralyzing. I did not want to be admitted into a facility. I was forced into it. My wife and the NHL team I was coaching for insisted on it. Well, thank God they did–it changed me. I got on the right medication, I got educated, I learned tools, and I got healthy. I was so extreme that I don’t know that outpatient therapy would have done the trick. It was life saving and life changing.

Q. It goes without saying that having OCD is hard for us. But it can also take a toll on our loved ones. Joanie stood by you through some of the darkest moments of your life, and it couldn’t have been easy for her. Do you have any advice for my readers whose family members have OCD?

A. OCD is torturous for us sufferers, but it really hits the whole family as well. When I went into treatment, it was a dual diagnosis facility. Meaning I had to work on my OCD and my self-medicating with alcohol. My wife, Joanie, went to a five-day family program. This was a big turning point for her and us as a couple. Our marriage was in shambles. It was there where she learned about me and my disorder. She was educated and advised. The other families shared their experiences dealing with their loved ones. The biggest thing for Joanie was understanding that I was sick, that the OCD was not who I am, but what I had. There was hope and support for her. Education for family members is crucial, as is counseling.

Q. You’ve noted that men often feel uncomfortable discussing mental illness, that they think they need to be indestructible. As an athlete in one of the rougher sports you especially felt the pressure to remain stoic, but you’ve since written a book and have given several candid interviews. What was the turning point that convinced you to start talking about your struggles with mental illness? 

A. I think being open in my interviews and getting feedback from fellow sufferers really helped me realize that I was not alone in my struggles. My candidness helped other people, and men started reaching out to me as well. Surviving a suicide attempt, waking up out of a coma with a bullet in my head, really made me reflect: Why was I spared?Why was I successful in that I played in the NHL? Why did I have all these demons through my life? Well, I put it all together and figured the success gives me a platform to speak publicly. Conquering my demons gives me something to speak about, and help those still in the dark places, still struggling. The book was the hardest thing I’ve ever done, but it’s been the most gratifying as well. The emails and conversations from people who read it makes it all worthwhile. Playing goalie in the NHL, you have to be tough, both mentally and physically. Men see that and know I did it while struggling with OCD and other problems. I guess I’ve made it easier for them to admit they’re struggling too.

Q. You’re doing well now. How do you stay on top of your symptoms and prevent relapse?

A. Today, I have to be accountable and do my part to stay healthy. I stay on top of my medication and doctor visits. I try to work out regularly. I meditate to keep balanced. I go to meetings. I support others and be of service to others. I’m grateful every day. I try not to take anything for granted. My wife and family mean everything to me, so I have to be healthy for them. They’ve seen me at my worst and I want to be there for them in every way I can.

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

A. You don’t have to suffer. It was a long, hard road for me getting well–today there is a lot more help for us. Get help. I know I couldn’t have gotten better by myself. The OCD Conference in Boston really encouraged me. We’ve come a long way in research, medication, therapy, and support. Never feel shame in being ill with something that’s not your fault. Have hope…because it’s real.

Tuesday Q&A: Lee Baer

If you follow my blog or know anything about me at all–at least as far as my OCD story goes–you know how much I respect and admire Dr. Lee Baer, author of The Imp of the Mind: Exploring the Silent Epidemic of Obsessive Bad Thoughts. When I finally made an appointment with an OCD specialist and croaked out a few words like “bad thoughts” and “no one will love me if they know,” the psychiatrist recommended The Imp of the Mind. “It could fit in my front pocket,” he said, patting his shirtfront, “but it’s packed with good information.” (By the way, that’s only true if you have unusually large pockets, because the book isn’t that small.)

That “little” book saved me. After having silently suffered with taboo obsessions for years and years, I learned that I wasn’t actually alone–I wasn’t the only person who’d had thoughts like I’d had, and they were nice, relatively normal people, too.

Nine years later, Lee and I are collaborating on a peer-to-peer support program (stay tuned!), and we presented together at the OCD Conference in Boston in August. What a rush! As I tearfully told everyone in the audience, I was up there with my hero.

Now you have the benefit of hearing directly from him–sorry, these are all my questions, but I tried to ask what you’d want to yourself if you had the chance. Thanks, Lee!

Q. When I was struggling the most with my taboo obsessions I was actually worried that getting better would be a negative thing. I thought, “What kind of person would I be if these terrible thoughts didn’t bother me?” and I thought the distress is what kept me from acting on them. What would you tell someone with similar fears?

A. This is very common: OCD is very tricky so it puts sufferers of taboo thoughts in a “damned if you do, damned if you don’t” dilemma. It is very important to recognize that the OCD is trying to make you think like this and not be fooled. CBT and/or medications will not make you any less empathetic to terrible things that happen in the real world–instead, they will keep you from over-reacting to “what-if” scenarios that OCD conjures up in your mind.

Q. What made you decide to treat OCD?

A. I have specialized in treating patients with OCD and related problems since about 1985, when Drs. Jenike, Minichiello, and I established one of the first OCD treatment and research programs in the country at Massachusetts General Hospital, because we were fascinated by this disorder, in which otherwise highly intelligent people experienced thoughts and rituals that they were unable to control. Also, at that time, OCD was considered to be resistant to existing treatments so we saw solving this problem as both a challenge and an opportunity to make a real difference in people’s lives.

Q. I recommend The Imp of the Mind all the time. As you know, it was one of the first things my psychiatrist prescribed the day he diagnosed me with OCD, and just knowing I wasn’t the only person with taboo obsessions like mine helped tremendously. Why did you focus on this type of OCD?

A. The idea for this book developed soon after we founded the OCD Institute residential treatment program at McLean Hospital in 1997. In the course of running several groups in this program, I noticed that patients with taboo obsessions felt ashamed to discuss their problems in group settings with other OCD sufferers with problems like excessive hand-washing or checking doors or electric plugs. When I asked why, these sufferers of taboo obsessions told me they felt that the other patients’ problems–although very troubling–did not have a moral component and did cause one to question if he or she was truly evil. They worried that these other patients–although they also had OCD–would not understand their taboo obsessions and think they, in fact, wanted to do the terrible things they imagined. To address this problem, I began a separate evening group for individuals with taboo obsessions, and found that the participants experienced great relief in being able to share their experiences with others who had similar problems. It was through running this group that I recognized the need for a book on this topic to reach others who were suffering in private. And it was through my experience with these groups over several years that I learned much of what I know about these taboo obsessions.

Q. In The Imp of the Mind you share an example from White Bears and Other Unwanted Thoughts by Dr. Daniel Wegner. The basic idea is that if you tell someone they’re forbidden from having a certain thought–in this case, picturing a white bear–they’ll be even more likely to have the thought. In fact, the thought becomes stronger the more they try to rid it from their mind. How can someone with taboo intrusive thoughts overcome the urge to push the obsessions out of their minds as quickly as possible? The thought of murdering a loved one is so painful it’s a natural response to recoil at it.

A. Dr. Wegner’s book explains one key reason for the “stickiness” of taboo obsessions in a very easy-to-understand way. Dr. Wegner and I often discussed this topic, both before and after he joined the Harvard College faculty, and I was saddened by his untimely passing two years ago. We agreed that the first step for sufferers of taboo obsessions was for them to understand that thoughts passing through our minds are not as important as we often believe them to be. Everyone has thoughts they don’t like having at times, but the very universal nature of these thoughts proves that they are not dangerous–if this were not the case, violent and sexual attacks would be occurring daily in every home and office! Taking this leap of faith is often the first step in successful treatment. Secondly, sufferers have to understand that OCD is “tricky” and it will try to get you to fight the obsessions, giving them strength, through the mechanism of “thought suppression” that Dr. Wegner researched so thoroughly. Truly understanding these two concepts often reduces the OCD sufferers’ suffering instantly.

Q. People with taboo obsessions are terrified they’ll act on their thoughts. They think the thoughts must mean something; otherwise they wouldn’t have them. Without giving in to our compulsion to be reassured, what can you tell us about the likelihood of people with OCD acting on their obsessions?

A. Although I tell my patients (only once, mind you!) that based on my experience, and the experience of my colleagues who treat OCD, they will not act on their violent or sexual obsessions. However, I also know that this will not really work to reassure them, because OCD preys on doubt and tries to get them to find absolute, 100 percent certainty. Yet there is no absolute certainty about anything in the future–even about the sun rising tomorrow–so the solution is to learn to live with the feelings of uncertainty, even of things that are extremely unlikely.

Q. Why do you recommend ERP to patients with OCD?

A. I tell my patients that we all have a “rational brain” and an “emotional brain.” Their rational brain can understand that their taboo obsessions are not meaningful, and they need to learn to let these obsessions pass without fighting them, while their emotional mind can continue to react with strong, uncomfortable feelings to these thoughts. The most effective, non-drug treatment we have for reducing or eliminating this reaction of their emotional mind is through exposure and response prevention. I describe this process in detail in my book Getting Control.

Q. Many people with “pure O,” that is, mostly obsessions coupled with mental compulsions, wonder how ERP will work for them. You can’t have advise them to touch a toilet seat and then resist the compulsion to wash their hands, for example. Let’s say someone with pedophilia OCD comes to you. How might you go about exposures?

A. I’d first help them to identify situations that they are avoiding due to their obsessions. Next I would have them gradually go into these situations while learning to tolerate the discomfort and obsessions that come while doing it. This is called in-vivo, or real-life, exposure and response prevention, and I always try to begin with this if possible. We’d also probably prepare a worst-case scenario of their worst fear coming true for them to record and listen to at home until their discomfort goes down without ritualizing. This is called imaginal exposure and response prevention.

Q. What advice do you have for folks who live in rural areas or far from quality care?

A. I would definitely suggest they start by joining the International OCD Foundation (IOCDF) and, if there is one, their local chapter. This will provide them a wealth of support and information about support groups and providers in their area, as well as the annual meetings for sufferers and their families to learn about treatment for OCD.

Q. You and I have been working on a peer support program–our goal is to match folks who have taboo obsessions with people who have had similar obsessions and have been some progress toward recovery. What are the benefits of such support?

A. My experience has always been that it benefits both individuals greatly: I have yet to have a patient get better from their taboo obsessions who is not excited about the idea of having the chance to give back to another sufferer at an earlier stage of dealing with this disorder (probably because they remember how hard it was at the beginning for them). And for my new patients, hearing from someone with similar symptoms who has gotten better gives them hope, and also lets them feel comfortable sharing some of their most private fears, often for the first time.

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

A. Try and find someone they trust to talk with about their obsessive thoughts. This can be a family member, a doctor, a clergy person, or someone affiliated with the IOCDF. But no one should have to deal with OCD alone.

Tuesday Q&A: Janet Singer

Happy Tuesday! I’m pleased to host a fellow blogger and author today, Janet Singer of OCDTalk. Janet is a tireless advocate for the proper treatment for OCD–and she doesn’t even have the disorder herself. After watching her son suffer through many missteps of treatment, Janet dedicated herself to spreading awareness about OCD and how to best treat it, namely, exposure and response prevention (ERP) therapy.

Janet’s first book, Overcoming OCD: A Journey to Recovery, came out earlier this year. A gripping and sometimes heartbreaking read, it is a memoir of her family’s experience with treatment–medication, “talk therapy,” and residential treatment. You can read my review, but first let’s chat with Janet.

Q. You’ve been blogging about your experience as a parent of a child with OCD, and you also wrote a book, Overcoming OCD. So far it’s not something your son has shared as openly as you have. What did he think when you told him you wanted to start a blog, as well as contribute to existing blogs, in order to help others like him get the proper treatment sooner?

A. You are absolutely right that my son doesn’t like to talk about his experiences with OCD, though he doesn’t hide it from his friends. I actually asked his permission to blog and work on a book, as I didn’t want to become involved in anything that would make him uncomfortable. He saw how passionate I was and realized how helpful our family’s story could be, so he was fine with it. His only request was that I use pseudonyms for our family.

Q. You could have easily receded into the background after Dan triumphed over OCD, but you have been tireless in your efforts to spread awareness about this often misunderstood disorder. Tell us why.

A. What initially propelled me forward was the fact that ERP therapy is not well known or widely used to treat those with OCD, even though it is the first-line psychological treatment approach as recommended by the American Psychological Association. It was so unacceptable to me that I decided I would spread the word myself! My advocacy efforts widened and evolved quickly, and now I talk about anything and everything related to OCD. But spreading the word about ERP, and letting people know that OCD, no matter now severe, is treatable, is what got me going, so to speak.

Q. Was writing a book about your family’s experience always a goal, or did it become apparent that it was something you needed to do as you advocated more and more in the OCD community?

A. It was always a goal of mine, even before we had our “happy ending” as I honestly felt our story could be helpful to so many people. I did put it on the back burner for a while as I was so busy and involved with my blog, but I knew at some point, I needed to write that book.

Q. How did you first realize Dan needed help? Did he have obvious compulsions, or did he come to you to tell you about his symptoms? 

A. We first realized Dan needed help when he came to me and my husband and said, “I have OCD. I need help.” Seriously, we had no clue, even though he was 17 and still living at home at the time. He diagnosed himself with the help of the Internet. Because his compulsions were mostly mental, it was easy for him to hide them. Of course in hindsight, we now know there were signs.

Q. When he was first diagnosed, what treatment did he seek?

A. His long-time pediatrician gave him 10 mg of Prozac and suggested he see a therapist. So off he went to the local psychologist in town, who told us he treated OCD. He used “talk therapy” with Dan, and told us his OCD was “no big deal.” Sigh. So many mistakes were made!

Q. Janet, I read your book, and let me tell you, it was heartbreaking at times. You watched your son deteriorate before your eyes, and you and your family put all the hope you had left in a residential treatment program. Dan’s treatment didn’t go as planned, however. You began to worry that he was too attached to the program and wasn’t learning how to re-enter the real world, particularly the college he’d worked so hard to get into. What do you think should have happened differently?

A. My main complaint about the residential treatment program is that my husband and I felt deliberately shut out of all aspects of Dan’s care while he was there. While we understand that we didn’t need to know the specific details of his OCD or even his ERP therapy, we absolutely should have been involved in decision-making that would potentially affect his life’s goals and his dreams. There is no question the treatment center knew how to treat OCD. But they didn’t know our son. They saw Dan in the worst shape of his life, so of course they couldn’t really know him as a person–his values, hopes, dreams, goals. We naively thought we would be encouraged to collaborate with the treatment providers to figure out the best ways to help Dan. That never happened.

Q. I know many people need residential treatment, and it’s possible to thrive after completion. Do you have advice for individuals who may be entering such a program, or for their parents, so that they get the most out of it?

A. For parents, I would recommend asking questions before your child even attends. Make sure you feel comfortable with your expected level of involvement in your child’s treatment, and make sure to speak up if you feel you are not being heard. So many parents feel intimidated by “the experts” and just defer to whatever they recommend. I think this is a big mistake. Nobody knows your child, or cares about your child, as much as you do, and your thoughts, opinions, and feelings should absolutely be taken into account. I don’t have OCD so it’s hard for me to advise someone who is entering a program, but I do know how important it is to commit yourself fully to the intensive treatment. It’s scary, but in the end, so worth it.

Q. Another roadblock on Dan’s path to recovery was overmedication. At one point he was diagnosed with ADHD, an analysis you completely disagreed with, and he was medicated for that, as well. How can a person with OCD empower oneself to take treatment one step at a time in order to avoid a situation similar to Dan’s?

A. That’s a great question, Alison, and I’m not sure I’ve got a good answer. I could say “educate yourself,”  or “research different meds,” etc. but Dan was in no condition to do any of that himself. He was doing so poorly at the time,  and was happy to take a new drug that “might” help him. And he trusted his doctors. And because his OCD was still so intense, he often wasn’t thinking clearly. Though I don’t have a good answer to your question, it brings up the importance of having loved ones advocating for those with OCD when things are really bad.

Q. It seems that Dan hit rock bottom at a particularly awkward time–he was 19, so he wasn’t a child anymore, but he also wasn’t a fully independent, mature adult who knew how to navigate the mental health care system on his own. How did you and your husband overcome some of the hurdles you faced in this parental gray area?

A. You are absolutely right that his age complicated things. Because he was over 18, his doctors couldn’t tell us anything without his permission. Dan was happy to include us in everything, so this was really only a problem at the residential treatment center, when the staff did not communicate with us. I think his age was more of an issue for us as parents. We tried to treat him like a “normal” 19-year-old, but how do you do that when your child is barely functioning? As he got better, we had to let go more and more, even though it was scary for us as parents. It was a constant balancing act. I forced myself to put some of my worries aside so that Dan could move forward toward a life of independence. I reminded myself that while it would have been easier for me to just keep Dan close to home and monitor his every move, it really wasn’t what was best for him.

Q. That brings up a common issue in treating OCD. Oftentimes the best way to help a person with OCD is to not help, meaning we shouldn’t enable him or offer too much reassurance. How did you make sure you were helping Dan find the right treatment without defaulting to what probably felt natural as a mother–comforting him, reassuring him, doing whatever it took to ease his distress?

A. Great question. When I first found out he had OCD, I comforted and reassured him all the time because, as you say, that’s what mothers do. Looking back, it’s amazing to me that none of Dan’s treatment providers ever explained to us that accommodating Dan only strengthened his OCD. That’s something we learned through our own reading, etc. Families need to be educated! Honestly, once we understood how and why reassurance fuels the fire of OCD, it was easy to stop because we knew it was best for Dan. Also, Dan would actually tell us when we were inadvertently enabling him, as he wanted to get well so badly. As we worked toward finding the right treatment, and went through so many ups and downs, I’m sure we enabled him at times without realizing it…it was a definite learning process–doing the “opposite” of what your instincts tell you isn’t easy!

Q. How is Dan doing now?

A. Thankfully, Dan continues to do well. He is 26, working in his chosen field, and living with his girlfriend. And he’s happy. What more could I ask for?

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

A. Don’t wait one more day to get the right help. OCD is treatable! I have never met anyone who has regretted doing ERP therapy. The only regret I hear is for not having done it sooner.

Tuesday Q&A: Carol Rettner

Carol and Jeff on the dance floor

This week I’m hosting Carol Rettner, a kind, hilarious, and brave woman I met at the OCD Conference in L.A. in 2014. When I met Jeff Bell and mentioned I was from Minneapolis, he asked if I’d met Carol–I hadn’t–and later introduced us. He also told me that until recently Carol hadn’t left Minnesota for nearly three decades, but there she was at a conference in California, rooming with a woman she’d met at another conference. And this past summer Carol and I roomed together in Boston, where I learned just how delightful she is.

Carol credits Jeff with helping her recover from OCD and make great strides, and their friendship is a testament to how incredibly important a strong support system is. That said, Carol had to do the hard work herself, and I think you’ll agree that her strength is inspiring. It is possible to get better, even one small step at a time. (But for the record, Jeff is awesome.)

Let’s hear from Carol.

Q. How did you first hear about the conference? Why did you decide to go?

A. My OCD therapist had mentioned it and then a friend said she was going and asked me to go along. I decided to go to that conference because it was in my home state and if my anxiety got too high I could be home in 20 minutes. It was also less expensive since I was able to volunteer and didn’t have the extra expense of a plane ticket. OCD had taken a toll on my finances.

I had friends who were attending and so with a lot of encouragement and a little bit of pushing from my therapist, I decided to risk it. My OCD was getting progressively worse and soon my contamination fears took over my life. Public transportation became almost impossible and if I did have to use it, the decontamination process I had to go through after could last for days. So I didn’t leave Minnesota for 27 years except for my four-month stay at Rogers when I did their residential OCD program.

Q. Tell us about your first conference. Going must have been hard, but you pushed past your fears and ended up meeting people who understand what you’d been going through. 

A. My first conference was in Minneapolis and I was miserable. I remember I kept telling myself I should just go home! After all, it would only take me 20 minutes and I could be out of this anxiety-provoking situation. I guess somehow I knew that even though I could feel better in 20 minutes it wouldn’t last! OCD would find me again. I had been running for years and I was so tired. I either had to fight or die. It was in Minneapolis that I met Jeff Bell. He saw me looking miserable and reached out to me. I ran from him, too. I did find him before the conference ended and we talked and I cried and we became dear friends. I kept in contact with him, I kept doing my ERP, and I slowly got stronger.

Q. That hard work–and your friend’s support–paid off, because making your next conference experience a reality required even more gumption. 

A. It was three years after attending my first conference in Minneapolis and 27 of not leaving Minnesota that I started thinking about going to the conference in Chicago. That would mean an eight-hour ride on the Mega Bus, using a public restroom, a taxi cab ride to the hotel, and being more than 20 minutes away from home. At the time it seemed like a terrible idea for someone with severe contamination fears. I was terrified, but I had to do something to save my life. Even if I had managed to stay alive physically I was not living.

I made it to Chicago and that’s where I finally realized I could feel both anxious and safe. I remember standing on Navy Pier with Jeff Bell and I just started to cry, but for the first time in a very long time they were tears of happiness. I remember telling him that I finally felt alive.

Q. How long have you had OCD? How did you realize it was OCD–were you diagnosed by a doctor, and if so, did you have any idea you had OCD before you made an appointment? 

A. I’ve had OCD since about the age of three. At that time no one really knew anything about it, and I remember my parents telling me they thought I was just trying to annoy them. As I got older I started hearing and reading more about it. When I was in college I met a person who had OCD and she confirmed what I already knew. It took her six years to convince me to finally get help. I had already lost several jobs because of my OCD. So I went to my first appointment, sat down, and said, “I have OCD, can I leave now?” He was a nice doctor, but I didn’t get ERP therapy and I didn’t get better. I quit counting my hospitalizations after number 37.

Q. Can you share some of your obsessions and compulsions with us? Was there one you considered the worst or the hardest to overcome?

A. When I was little everything revolved around keeping people safe. I had to say my prayers in a certain order. I would do these tapping rituals on my closet door at night and if I deviated from the pattern I would have to do the original and all of the deviations. I also had scrupulosity issues when I was fairly young. I remember my dad telling me that scrupulosity was a sin because it meant you didn’t believe in a forgiving God. I spent Saturdays going to confession; I went from church to church re-confessing because I was afraid I had forgotten something. I also had contamination and checking. I think the hardest one was the harming fears. I remember I had wanted to be an elementary school teacher. I started in the program in college but dropped out because of the harming fears. This was definitely the worst one for me because they made me feel like I was some kind of a monster and they kept me from becoming a teacher.

Q. Once you knew you had OCD, how did you go about treating it?

A. I saw many different psychiatrists and therapists, but it wasn’t until I started doing ERP that I began to improve. I kept looking for an easier way out and then realized there wasn’t one.

Q. I sometimes say I had to hit rock bottom before I finally got help. Did you ever hit what you considered rock bottom? Tell us about it.

A. I feel like I was at rock bottom for a very long time. I would lie in bed at night wondering if I would or could make it through the next day. I was at a point in my life where I completely stopped making plans for a future. I truly believed that this was both  my present and my future. There was nothing else. My nights were consumed with OCD. I would plan the route I would take from my bed to my closet, what I could touch and what I couldn’t, what was a safe number to set my alarm at, the thoughts spinning and spinning until I finally fell asleep. Only to have the same thoughts reappear in my OCD dreams. As I started to do ERP and build a great support system something amazing happened: I started to make plans again. These were not plans of how I would make it through the day, these were plans of how I would live each day!

Q. We roomed together at the conference in Boston this year, so I know you’re doing pretty well. How did you get to this point on your journey with OCD?

A. I finally had to face the fact that there was no easy way out. This wasn’t an illness I could take medications for for a few weeks and be cured. ERP was my best option and also the hardest. I constantly have to remind myself that I don’t need to do everything perfectly. Every step I take forward is one step closer to the life I want for myself. This has always been an issue when I attend the OCD Conference because I still sleep on an air mattress because of contamination fears. In a perfect world I would jump in a hotel bed and deal with it, but the world isn’t perfect and neither am I. I just need to do my best and I will get there.

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

A. Don’t base the decisions you make in your life on what your OCD wants. It is your life; base your decisions on what you want.

Become an OCD Advocate!

The International OCD Foundation has launched a new advocacy program that’s easy to get involved in. Take the pledge and get to work! As I note in this blog I wrote for the IOCDF, being an advocate can take many forms–you can be involved in any way that works for you.

OCD Conference in Boston

I blogged for the International OCD Foundation again this year, recapping the conference events from my own perspective.

Enjoy! Although there is so much more to the conference than I wrote about, I hope you see how wonderful the experience can be and make plans to go to Chicago next summer.

OCD Conference: Boston Edition

OCD Conference: Saturday, Saturday, Saturday!

OCD Conference: Going Home

 

OCD Conference!

The 22nd annual OCD Conference is just around the corner! I’m looking forward to four days with hundreds and hundreds of people who either have OCD, treat OCD, or want to learn more about OCD for any number of reasons.

It’s in Boston this year, so I’m especially excited because I’ve never been there. I won’t have much time to experience the “real” Boston, though, because my schedule is filling up by the minute: Cocktail hour, pub trivia, a meetup with a Facebook support group, an affiliate meeting, my presentation with Lee Baer–not to mention all of the sessions. I noticed that the psychiatrist who diagnosed me with OCD will be presenting, so I plan to sit in on his session and give him a great big hug afterward!

Follow me on the IOCDF blog to learn about the many inspirational and educational–and just plain fun–opportunities available at this conference.

Tuesday Q&A: Ethan S. Smith

It’s a big week–the week of the 22nd annual OCD Conference! It’s in Boston this year, where the International OCD Foundation (IOCDF) is based, and I’m so excited to be a part of it again. But enough about me.

Last year Ethan Smith, a Los Angeles-based actor, writer, producer, and director, delivered the conference keynote. Ethan described his fight against severe OCD, and even as he was talking about the darkest moments of his life he managed to make the audience laugh. In retrospect, he was able to see–and share–the humor in getting kicked out of residential treatment at the OCD Institute at McLean Hospital in Boston by deliberately hurting himself and pretending to pass out on a snowbank.

Ethan will be at the conference this year as well, so be sure to check out some of his sessions.

Photo credit: Roberto Farren

Q. Last year, after years of suffering from OCD, you gave the keynote presentation at the 21st Annual OCD Conference. What inspired you to apply for this huge honor–and long speech?



A. To be honest, I wanted to give the speech the minute I knew it existed. Probably desperate is the right word when describing how badly I wanted my story out there so others wouldn’t have to go through what I went through. I knew through that speech I could impact the most amount of people. 

Q. During your presentation you shared candid videos of yourself engaging in ERP. You said you’d never shown this footage to anyone, and suddenly you were sharing it with a room full of people. How did you find the courage to do this? Why did you think it was important for the audience to see you in your lowest moments?

 

A. During the intervention portion of my treatment, I was fortunate enough to have one of the therapists at the OCDI playing an almost coach role in my life, in addition to my therapist. Because of this, although I was a victim of stigma many times before getting better, I never felt embarrassed about what I had gone through because I was able to discuss my concerns, doubts, fears, and pretty much everything else as they happened in the real world, in real time. I started to feel a sense of pride and accomplishment for what I had been through. Therefore, those videos represented a completely different person. They represented what I had been and where I had come from, not who I had become. It was a shell of my former self. But a very significant shell. It’s a side of OCD people don’t often see, especially the public. It’s a far cry from quirky hand washing or laughing about germs. Seeing how low OCD can take you is necessary to reach those who haven’t hit that bottom yet. To let them know that bottom exists should they choose not to pursue treatment or take it seriously. It’s the reality of severe OCD.



Q. You’ve said you were born with OCD. How did you realize there was a name for what you were dealing with? When were you diagnosed?

A. It was only apparent I was born with OCD in retrospect. I went to my first therapist at age 6 but he did not diagnose me with OCD. I just had “issues.” I was a quirky kid with emotional issues. This was 1984. Did they even have an OCD diagnosis then? I didn’t realize there was a name for it. And to be honest, I didn’t really care. I don’t think I realized it was odd behavior until high school. I knew I wasn’t like other kids, and I definitely was unhappy much of the time, but I always thought, “That’s me. That’s who I am.” I don’t think I ever considered it was something else until I was actually diagnosed. I was diagnosed at age 14 after my first panic attack in high school. I refused to go back to school. I would just walk in the school and panic. After anything physical was ruled out, I went to a “top” psychologist in the Atlanta area and he diagnosed me with OCD. 

Ethan and IOCDF director Jeff Szymanski

Q. As a young adult you had a fear that you’d harm yourself, a fear so powerful you became scared of your own hands. Your life must have been pure torture at the point–you couldn’t escape your own hands, after all–but we know you’ve overcome this fear. How did you do it?

 

A. Just to clarify, most of my young adult life was spent being afraid of illness. Not germs, but a fever was meningitis, or a headache or a brain tumor. Constant trips to the doctor, I took my temperature upwards of 60 times a day, and carried thermometers with me at all times. The fear of harming myself didn’t come until I was 32 when I that trio of being off my meds, my girlfriend breaking up with me, and my grandfather dying happened. I just spun out of control and my OCD shifted based on a question a psychologist had asked me. He asked if I was impulsive. “Would you ever impulsively hurt yourself?” I thought the question was ridiculous. Of course I wouldn’t. And then I got in the car and thought, “What if I did? What if I just lost control and started hurting myself?” That’s when the OCD shifted. That was also the day I completely stopped taking my temperature for the first time in almost 20 years. 

 

As far as how did I do it, that’s a really big question. So I’m going to give you a very simple answer: I became willing to harm myself. I became OK with the idea that it might happen. I finally embraced the uncertainty and embraced radical faith and what my doctors were telling me.



Q. After years of treatment–you attended the McLean OCD Institute (OCDI) but got kicked out and your mom even lived with you for a semester during college–you ultimately had to help yourself. How did you realize that if you were ever going to improve you had to take responsibility for your own recovery?

 

A. Ahhh, finally an easy question. When I was living in the crack house and hadn’t left the bed in six days. I hadn’t eaten, showered, barely drank any water. I realized no one was coming for me. Praying hard wasn’t enough. There was no magic that was just going to take it all away. I had to meet people halfway. I had to invest in myself what others were willing to invest in me. Only then, did I stand a chance. So I got out of bed and headed toward the fire. I never looked back.



Q. Your parents were very involved in your treatment plan. Why should family members be a part of the recovery process? Is there such thing as too much family involvement?

 

A. I definitely think it’s individual in terms of too much involvement. But, what seems to be a very consistent pattern with OCD is that good parenting favors the OCD, not the child. The treatment for OCD is completely counterintuitive to parenting. Therefore, it’s a family disorder. The behaviors of the parents have to be modified in order to achieve long-term success. They must be just as educated about OCD, how it works, how it affects the sufferer, what snuffs the OCD out. I’m very passionate about imparting my position on family involvement. I firmly believe true success is impossible without the family/wife/caretaker component. Otherwise, after, let’s say, residential treatment, it’s just a dry addict going back to all his druggy friends he used to hang out with. Only a matter of time before he uses again. And once that snowball gets rolling, you’re back to square 1…or worse. 

Q. Do you have any advice for someone considering residential treatment? Advice for not getting kicked out?

 

A. Haha! Yeah, don’t cut open your head and dive into a snowbank pretending to be passed out. Easy…Treatment is scary, and hard, and terrifying, and it most definitely gets worse before it gets better. But like I said in the keynote, the pain you invest now is worth the pleasure you’ll experience the rest of your life. We overcomplicate treatment. Treatment, at least in theory, is easy. Listen and say yes. That’s it! That’s all you have to do. Unfortunately, in order to do that you have to not listen to your own brain, what you believe to be your gut, all that you know. You’re most likely an incredibly intelligent, smart, creative individual and you probably know it. So, being told not to listen to the part of you that you believe makes you incredibly unique and special is a tricky proposition. Slowly but surely, however, you start to hear that the OCD sounds different than “you”; it becomes less tricky. It doesn’t define you or your uniqueness. In fact, in regards to OCD, you’re not special at all. It’s all the same tornado in all of us. Sure, it may suck in different stuff, but it’s the same. 

 

OCD is like math. In math there’s a right or wrong answer, and nothing in between. Treatment is exactly the same way in my opinion. Can you get better kinda sorta trying? Sure, but I think that’s still a wrong answer. Negotiate with OCD, surfing that area between the right and wrong answer, and you’ll never truly achieve the full life you’re looking for. Fully embracing treatment, especially residential, can potentially give you that right answer, that full life. Ever think you could have OCD and serenity at the same time? Yeah, me neither. But I do.

Q. You’re able to joke and laugh about your OCD. How do you feel about others joking about it? How about people who claim to be “soooo OCD” on Twitter?

A. You have to have it to joke about it. Just like being Jewish and making a Jewish joke. Totally kidding. Listen, I think it’s a fine line. I know a lot of people that get really angry when the term “OCD” is misused or joked about. To be honest, for the most part, it doesn’t bother me, because in most cases it comes from a lack of education. When I hear it, I see it as an opportunity to enlighten and educate so that it doesn’t happen again. Anger or frustration regarding doesn’t yield an effective result. I know what cancer is and how it affects others. For the most part, you don’t hear a lot of cancer jokes. If you do, yeah…that person is a %*$&%*. But OCD, as with many mental illnesses, is still so misunderstood and grossly misrepresented. So can I blame the majority of people for saying they’re  “sooooo OCD?” No, but I can engage those people in a friendly way and redirect into something meaningful.



Q. You recently shared some exciting news: You’re an IOCDF spokesperson! How did this come about?

A. Much like the keynote, I knew I wanted to be a spokesperson the minute I discovered they existed. It was just another avenue to share my experiences on a larger scale in the hopes to make a difference. As to why it happened or came about, I definitely expressed interest in becoming one to the amazing individuals at the IOCDF. I’m not known for being quiet or introverted, so I was vocal. But, in my heart, it was never about the “title” or becoming a “spokesperson.” It was about the work. It was about those suffering and not getting help. It was about no other child or adult suffering in the way that I did. That was/is my passion and my mission. But you can’t go on a mission from your couch, so I started talking to other people. Being open about my story. Allowing my former therapists to reach out to me as a resource and talk to their patients. And then becoming involved at the conference and speaking, et cetera. This work that I do, if you can call it work, is the most fulfilling part of my life.

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



A. Uncertainty is one of the greatest and most exciting aspects of life. Give it a big hug. Oh…and don’t cut your head open and jump in a snowbank.

Tuesday Q&A: Jon Hershfield

I think I first heard of Jon Hershfield on Twitter–we definitely had OCD in common, so I followed him and always loved what he had to say. And then I kept hearing about him and his first book, The Mindfulness Workbook for OCD, on OCD support pages on Facebook. People love that book! Then we ended up being situated near each other at a book signing at the OCD Conference in Los Angeles in 2014, but we didn’t have a chance to meet.

We went the entire conference without being formally introduced, and I thought I’d lost my chance to meet him. As my co-presenter/hotel-mate and I were walking away from the conference after it had ended, she saw Jon and his dad leaving a restaurant and shouted, “Hey, conference people! Hi, conference people!” She’s not as shy as I am, by a long shot.

So that’s when I finally met him, after the conference was over, and he was as delightful and sharp in person as he is on Twitter. Since he lived in LA, he was walking home to see his family–but he’s relocating to his first home, the East Coast, in June. His new practice, The OCD and Anxiety Center of Greater Baltimore, will be located in Hunt Valley, Maryland, and will open on June 22. Since he’s licensed in both Maryland and California, he’ll continue to work with clients in California via teletherapy, as well as new in-person clients in Maryland, focusing on mindfulness-based cognitive behavioral therapy for OCD.

Q. When you decided to go into psychotherapy, did you know you’d end up working so closely with patients with OCD? What is it about this disorder that inspires you to help people struggling with it?

A. I decided to go into psychotherapy specifically because of how much cognitive behavioral therapy (CBT) had helped me in my own journey living with OCD. When I was in the thick of it (both the worst part of my OCD and the hardest parts of treatment), I began contributing to online support groups. I spent a lot of time reading and responding to emails from other OCD sufferers and discovered that processing the stories of other people with OCD was really helping me better understand the way my own OCD mind works. It was with the support of my wife, my parents, and my therapist that I decided to depart from a career in entertainment and go to graduate school for a masters in clinical psychology. I knew that all I wanted to do was CBT for OCD and actually hit up Dr. Michael Jenike for the recommendation letter in my graduate school application. So perhaps I am biased towards working with OCD sufferers because of my personal connection to the disorder, but I also like to think that people with OCD have truly special minds capable of doing amazing things. They have access to a spectrum of thoughts and creativity that is both awe-inspiring and overwhelmingly painful at the same time. Suffering occurs as a result of not really understanding how that kind of mind works and so using ineffective strategies to try to change it. The idea that we can write our own instruction manuals to better operate this OCD mind is simply fascinating to me.

Q. Have you ever worked with a patient with a very severe case of OCD? How did you work through it?

A. I’ve worked with several cases of what I would describe as severe OCD. In my time at the UCLA Child OCD Intensive Outpatient Program, we only saw kids in the significant-to-severe range, and part of the reason we were able to break through the severity barrier was by providing several hours of individual CBT several days/week and incorporating the use of group treatment, parent education, and psychiatric medication management. In a simple private practice, time and resources are more limited. You typically see the OCD sufferer for a little less than an hour once or twice a week. So making progress in a severe case involves a combination of wise time management in session and the use of collateral resources (e.g., working closely with the client’s psychiatrist, bringing the family or spouse in for psycho-education). Sometimes the inclusion of home sessions can make a big difference as well. Severe OCD is as treatable as moderate OCD, so long as it is the OCD that is presenting the primary problem. If depression, for example, is getting in the way of treating the OCD (e.g., by depriving the sufferer of motivation), then that may need to be addressed first. In the end, homework and medication compliance are probably the biggest predictors of whether a severe case will become a moderate or mild case. Of the clients I have seen progress from the darkest depths of OCD to the greatest health, the thing they seem to have had in common was the willingness to let go of the idea that you have to wait to get better before pursuing the things you value (relationships, work, creating art, etc). In those cases, my job was mostly just to discourage waiting and then the exposure and response prevention (ERP) came naturally from that decision.

Q. I’ve met several people with OCD over the years, and we all think our own obsessions and compulsions are the worst. We think, “You’ll be fine–all you worry about is inadvertently bringing down civilization because you didn’t wash your hands thoroughly enough. But I obsess about killing my own child.” How do you respond to patients who have this mindset, that they’re somehow the exception who can’t be treated?

A. I think the next DSM should include a criterion for diagnosing OCD that says the person must have a belief that his/her obsession is unique, worse than others, and less treatable. When patients tell me this, I try to remind them that it’s not useful information. If it’s true that this or that obsession is something no one has ever obsessed about and we have to be extra special creative in constructing the treatment, it has no effect on the reality that the OCD is treatable and it’s treatable with CBT/ERP. Overly manualized treatment won’t take you very far. You have to construct the CBT to fit the OCD. So we don’t have to prove anything about how bad the obsession is. We just have to see where the behavior (physical or mental) is keeping this obsession afloat, target it, and change it.

Q. Your first book, The Mindfulness Workbook for OCD, has practically been a runaway success in the OCD world. People love it. What inspired you to write it?

A. People have been incorporating mindfulness with CBT for a long time. ERP is about putting yourself in the presence of unwanted thoughts and practicing allowing them to be there without pushing them away. This naturally lends itself to mindfulness. When I was approached by New Harbinger to submit a proposal for an OCD book, The Mindfulness Workbook for OCD just made sense. I’m extremely grateful for the opportunity and love that I was able to reach so many OCD sufferers in a format like this. I was used to writing blogs and, well, really long-winded emails, so a book was quite the learning curve!

Q. When you’ve gotten feedback on the book, is there any one section or technique that seems to resonate with your readers? 

A. Honestly the part I hear about the most is the preface to Chapter 1 in which I attempt to describe the OCD experience overall, what it’s like from the inside. Many self-help books have examples like “Bob’s story” and so on, but I wanted to have something that every reader with OCD would get, so I put one example and called it “Your story.” This is where I was thinking most personally about the material and I think that must resonate with readers. People also seem grateful for the specific descriptions of mental rituals, which has been scarce in OCD literature so far. Overall I think the book’s strongest element is that it looks at mindfulness not as an alternative or a stand-alone tool, but as something that can be used to enhance OCD treatment in harmony with cognitive therapy and ERP.

Q. The best way to help someone through OCD feels so counterintuitive: Don’t reassure the person, and don’t make it easier for her to follow through on her compulsions. That’s why I think your second book, When a Family Member Has OCD, is such an important title. What advice do you give family members and other loved ones who are struggling to understand their role in the recovery process?

A. Family members and other loved ones have to walk a very tricky line between supporting the person with OCD that they care about and also recognizing that this person needs to do their own work to get better. I hope to drive the point home that you can make hard choices to help your family member with compassion and without cruelty. In “When a Family Member Has OCD,” I highlight four potential steps that can be taken to approach this. (1) Identify the compulsions, not the person, as the problem. (2) Invite collaboration on addressing the problem. (3) Interrupt the OCD cycle with permission (this is where “don’t reassure” comes in). (4) Integrate healthy behaviors through modeling non-OCD responses and embracing uncertainty of your own.

Q. I have what is (sometimes controversially) referred to as pure O because I never performed the obvious outward compulsions like excessive hand-washing or checking and rechecking. Do you have a different treatment method for folks with pure O?

A. No. The treatment for OCD is CBT, a collection of strategies that includes cognitive restructuring, behavioral modification (ERP), and mindfulness skill development. Mental behaviors, though they may appear automatic and elusive, are nonetheless behaviors, which makes them available for targeting and treating. OCD sufferers tend to notice thoughts that others may be more likely to overlook or find unimpressive. How they address this “noticing” can come in many different forms. But I think it’s important that people recognize something like hand-washing is a physical behavior a person engages in when her mental rituals have failed to produce the relief she’s seeking. As a clinician, I might be able to get her to stop compulsively washing, but if I don’t also address the compulsive mental attempts to feel clean, relapse is inevitable.

Q. Speaking of pure O, what do you think of the name for this type of OCD? Do you, for lack of a better word, believe in pure O?

A. As a clinician, it’s a truism that there is no “pure O.” There’s nothing pure about it.  You have obsessions, you do compulsions (seen or unseen), it causes disorder in your life and so, you have OCD. That is all. Some people believed for a period of time that there were people with obsessions who were not doing any compulsions and they called them “pure obsessionals” and now we know they were mistaken. In fact, when you consider that the very nature of an obsessive thought is that it is assessed as intrusive and unwanted, that initial assessment is in some ways a compulsion right there, an attempt to disown and dismiss the thought. So if you’re treating OCD and you’re using the term “pure O” to describe a manifestation of OCD, reasonable educated clinicians will frown on this. And for good reason. If you call it something other than OCD, your patients will expect some other kind of treatment, and may not do what they need to do to get better.

All this being said, there is a large and beautiful community of OCD sufferers communicating internationally on the internet. These sufferers have used social media to form online support groups and these groups naturally form sub-sections. These subsections reduce the sense of isolation that sufferers feel because they know the people they are communicating with think like they do. For those who engage in a lot of physically noticeable rituals, like washing, cleaning, arranging, and checking, there is the sense that people get it. It’s on TV, and it looks like what people call OCD when they use the word on TV. For people who struggle with primarily mental rituals and intrusive thoughts about violence, sexuality, relationships, religion, morality, and hyperawareness–what gets called “pure O”–there is a sense of being different from the “washers and checkers,” so to speak. There is this feeling of being poorly understood, overlooked, and often misdiagnosed. While I’m the last person to promote tribalism, this sense of togetherness under some name that identifies the lack of physical rituals feels important to the “pure O” sufferer. When I was seeking support on the Internet, I knew right off the top that I didn’t want to be in a digital room of people concerned with things I wasn’t concerned with. I wanted to be in the company of people who feel like they can’t stop thinking about terrible things all the time, people like me. Somehow I knew to seek out a site called “pure_o_ocd” even though I knew the name couldn’t possibly be true.

So does “pure O” exist?  Well, it depends who’s using the term and what they think it means. If it means OCD with mental rituals and it helps you to have a name that makes you feel less alone, then it exists. If it is some therapist’s marketing ploy or a way to describe a manifestation of OCD thought of as “pure” from compulsions, then no. As for other names that would work better, I haven’t been able to think of any. One day, when stigma around mental illness is a thing of the past, perhaps there won’t be a form of OCD that feels marginalized by society and there won’t be any drive to have a special name for it.

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

A. Don’t rely on one piece of advice. If you can access and afford to see an OCD specialist, listen to what they have to say and do the work, all of it, even if the work makes very little sense in the beginning because it’s such the opposite of what you want to do sometimes. If you can’t access a therapist, read several books on OCD, utilize a workbook, educate yourself about the disorder and teach yourself the tools to master it as best you can. Join a support group, follow an OCD blog, go to an IOCDF conference, connect with other OCD sufferers. Take your own advice and pool it together with the advice of people who know about OCD. You’re not alone so don’t be alone.