Tag Archives: pure O

Tuesday Q&A: Michele Carroll

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MicheleHeadShotMeet the lovely Michele Carroll! Some of you may be thinking, “Wait, I think I have met her” because you’ve talked with her or seen her at some of the annual International OCD Foundation (IOCDF) conferences. As you’ll soon hear from Michele herself, she’s had OCD for yearsbut she’s only recently begun opening up about it more and sharing her experience with people beyond her close friends and family members. Let’s give her a very warm welcome!

How long have you had OCD? Many people—including myself—say it took years and years to be diagnosed, and it can take years to get the proper treatment as well.  What was your experience like?

I began experiencing OCD symptoms at age 10, but it didn’t develop into full-blown OCD until I had my daughter, 19 years later. Currently, I’ve had OCD for 18 years; it took me 13 years to get treatment.

The first symptom of OCD that I recall occurred when I was in fifth grade. At that time, I rewrote my social studies notebook from beginning to end because I thought it wasn’t neat enough and because I feared failing the exam. Looking back, this didn’t make much sense because I was a straight A student, so it would have been very unlikely for me to fail, even if I didn’t rewrite my notebook. In high school, I began to experience taboo intrusive thoughts, although I didn’t know it was OCD at the time. These thoughts started as scrupulous and blasphemous in nature and changed through the years to other taboo topics. No matter the topic, I was terrified of the thoughts because of what they could mean about me. I would engage in compulsions including praying a certain set of prayers in a certain order, doing the sign of the cross correctly to ensure my prayers were “going to God” and not the devil, seeking reassurance from others, questioning the meaning of the thoughts, analyzing them, trying to figure them out, and researching them on the internet. After I engaged in what I later learned were compulsions, my fear would temporarily decrease. The problem is that the cycle would start all over again, resulting in me engaging in the very same compulsions.

Years passed with this struggle. I eventually serendipitously saw a television program that was about postpartum OCD. On the show, the moderator said that doctors were prescribing antidepressants for this problem. Since this sounded a lot like what I was experiencing, I decided to tell my doctor that I was feeling depressed (so that he would prescribe an SSRI). I figured if I said that, I’d get the medicine without having to speak about the scary thoughts I’d been having. I thought I would get better, and the thoughts would go away.

Of course, avoiding talking about the thoughts, trying to suppress them, and engaging in compulsions didn’t make them stop. Eventually, five years ago, when seeing a psychiatrist who was not an OCD specialist, I finally worked up the courage to speak about the thoughts I’d been having. Regretfully, my doctor didn’t seem to understand, and he shared that he didn’t think I had OCD “because you don’t have any compulsions.” By then, I had read about taboo intrusive thoughts and mental compulsions online. I wanted to get help and get better, and I learned about the IOCDF. Through this group, I got connected with an OCD therapist who did exposure and response prevention (ERP). My recovery journey had begun!

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Once you did realize it was OCD, how did you tell your loved ones?

I have told my loved ones about my OCD gradually and on an individual basis. I first told my husband who had been experiencing these issues with me all along. Next, I told two friends who are psychologists because I felt they could “handle” the information. Since I have what has been coined “pure O,” I referred them to the IOCDF website for more information if they had any questions. Some time went by until I then told my mom, also referring her to the website. Telling other people with whom I’m close has happened gradually. But lately, I’ve talked more about OCD on my Facebook page, and now I’m sharing my story on your blog!

You’ve struggled with scrupulosity, or blasphemous intrusive thoughts. What are some of your common obsessions and compulsions?

I have struggled on and off with blasphemous intrusive thoughts, as the intrusive thoughts that I experience seem to hop around like the “Whack-A-Mole” game. When I seem to “conquer” one type of scary thought, the content changes to something else that I find equally scary. But, as the experts say, the content doesn’t matter in OCD; it’s still OCD.

I tend to experience blasphemous intrusive thoughts when I’m about to receive Communion in church. At that time, a scary thought about my love or lack of love for God will pop into my head.  In the past, I would pray a certain way to make the thoughts go away. However, through ERP, I have learned to not respond to the thoughts. I learned to treat the intrusive thoughts like any other random thought I experience, not as more important. Additionally, I will sometimes think to myself, “This is my OCD” or “Good one, OCD. Really clever.”

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A couple years ago you faced what many Catholics with religious obsessions might consider a trigger: visiting the Vatican! Were you nervous about going and experiencing unwanted thoughts in a sacred place? How did it go?

Yes! I was nervous about several different things. In addition to feeling like I’d probably experience intrusive thoughts, I was concerned about the safety of being out of the country with my children and the safety of flying. My brain can create lots of reasons for me to feel anxious! However, even though I was anxious, this was an event I didn’t want to miss. My daughter was going to be singing with her school choir for Pope Francis in the New Year’s Day Mass! This was, what I considered, a once-in-a-lifetime experience.

I coped with this by accepting that I might experience intrusive thoughts while in St. Peter’s. Since this was uncertain, and because my OCD tends to throw things at me that are particularly important to me, I realized that I might experience blasphemous thoughts while there. As it turns out, I’m so grateful I went and didn’t allow my OCD to stop me from going! When we were in an auditorium where Pope Francis was to appear, the Pope literally walked across the aisle and shook my younger daughter’s hand! And I touched him! This was (without a doubt) one of the most exciting moments in my life.

In day-to-day life—you know, not the Vatican—how do you approach your intrusive thoughts without turning to compulsions? And what do you do if you realize you are engaging in compulsions?

Usually, I deal with my intrusive thoughts by telling myself, “That’s my OCD.” If I’m not sure if a thought is OCD or not, I may get stuck for a little while. However, I’ve learned to also consider these as OCD thoughts, to make my best guess, and move on, dealing with any consequences later. I also regularly engage in self-care, including mindfulness, yoga, being active at work and home, seeing a therapist, and taking medication.

You’re a therapist, but you don’t treat OCD. How did you decide to become a therapist? Even if you didn’t know you have OCD before you went into practice, do you think dealing with the obsessions had any impact on your decision?

I’m a clinical psychologist, and although I’ve treated a few clients with OCD, it’s not my specialty. I completed my doctoral degree prior to developing OCD, so I didn’t become a psychologist because I had OCD. When I was in high school, I helped in the guidance counselors’ office during my senior year. At the time, I was experiencing some symptoms of OCD, but it wasn’t diagnosed. One day, while trying to figure out what field to go into, I told one of the guidance counselors I thought I might do what they do for a living. She laughed and told me to become a clinical psychologist. So, that’s what I did!

Since I was already a licensed psychologist by the time I was diagnosed, if anything, this may have made it more difficult to seek help. I experienced a lot of shame and self-stigma because I thought since I was a psychologist, I “should know” how to make this stop and get better. I was afraid at that time that if people found out, it could hurt my career. I feel differently about that now, but every now and then, that old fear will resurface.

I love the idea that therapists understand mental illness, in one form or another, from a personal perspective. But others may say they want their therapists to be “perfect.” Have you faced any stigma being a therapist with a disorder?

I have experienced more self-stigma than stigma directly from others. I have struggled with the thought that I shouldn’t have a disorder, should know how to stop it, and shouldn’t need help. On a few occasions, I have shared with clients or students that I have OCD. My main reasons for doing this have been to help them feel less shame, to let them know they’re not alone, and to encourage them to stick with treatment. Also, I have briefly shared my condition with interns or post-doctoral fellows because, as part of their training to become psychologists, I believe that self-care is vital. I hope to normalize them getting help if they ever need it. In general, when I have shared parts of my story with others, I have felt respected. As a side note, I’ve sought supervision from respected colleagues at times, such as when I’ve felt triggered. I try to be mindful about maintaining a healthy boundary between my personal struggle and the struggles of others.

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

You are not alone and it’s not your fault. Get treatment so you can live the life you desire. But most of all, be brave.

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Pure O in the News

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Have I mentioned how excited I am about the new website IntrusiveThoughts.org? Well, I am! Excited, that is. Ten years ago when I was diagnosed there wasn’t a ton of information out there about taboo intrusive thoughts, which is what I was struggling mightily with. Lee Baer’s book The Imp of the Mind was a tremendous help, of course, but there wasn’t much else specifically geared toward those of us with horrifying obsessions that we assume speak to our character.

And I’m not the only one who’s super stoked about the site, either. Several articles have been published about it — in some pretty mainstream publications, too, which gives me so much hope for spreading awareness of what OCD really is and dispelling some common misconceptions.

I wrote about the site on Lee Baer’s blog, OCD and Families, and I was interviewed for a piece published on Fusion. Will I ever tire of talking about OCD? Maybe when no one’s confused anymore.

Tuesday Q&A: Michael Jenike

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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.

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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.

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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.

Tuesday Q&A: Rose Bretecher

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Head shotEveryone 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, PureThe 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.

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?

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.

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?

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.

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?

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.

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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?

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.

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?

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.

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?

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.

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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?

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.”

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

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.

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

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: Jon Hershfield

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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.H_Family_i

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.

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?

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.

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

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.

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 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?

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.Mindfulness

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?

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!

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

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.FamilyMember

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?

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.

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?

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.

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?

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.

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

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.

Tuesday Q&A: Julie Burnfield

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This week we’re chatting with Julie Burnfield, who runs a podcast called Living with Obsessive-Compulsive Disorder with her husband, Andy. I kept seeing Julie and Andy at the conference in July 2014, but I never met them—it wasn’t until after I was back home in Minneapolis that we connected and Julie invited me for an interview. It took a while to coordinate our busy schedules, and in the meantime we got to know each other via email and Facebook.

JulieJulie writes beautiful poetry about her life with OCD, loves spending time with her husband and daughter, and inspires her listeners and Facebook followers with her message of hope and courage.

Thanks for being here, Julie.

Let’s get right down to it: You have OCD. How long do you think you’ve had it, and when were you diagnosed?

I can remember aspects of my OCD as early as 4 or 5 years of age when I would have to confess all the bad things I had done in my day to my dad as soon as he came through the door at night. If I didn’t confess, the buildup of anxiety (I called it a tummy ache at the time) would worsen and worsen to the point where it was unbearable. I was diagnosed with OCD when I was 22 years old. I knew there was something wrong with me all through high school and college but never had a name for it until I switched my major to psychology and we came to the chapter on OCD—lightbulb moment!

Can you share some of your obsessions and compulsions? Did you have any that seemed harder to overcome than others?

I have had pretty much every type of obsessions and compulsions over the years. They seem to morph from one kind to another; just when I think I have a handle on OCD in one part of my life it moves to another new part and I have to start learning to deal with it all over again. I have had contamination issues, checking, mental contamination, ruminations, intrusive thoughts, homosexual OCD, relationship OCD, pure O, pedophile OCD , religiosity, etc.

The hardest to deal with and to overcome was the pedophile OCD. I chose not to have a child for 10 years after getting married because of it and then when I did eventually have a daughter it was extremely hard to deal with and overcome; I still have many bouts with it when it can really get me down. I think it’s the hardest to deal with because my daughter is around me all the time and always in my head. Also, she is the person I care most about in the world and so having those types of OCD thoughts about her make them the most excruciating.

Once you knew you had OCD, how did you begin to recover from it?

I went to a psychiatrist to get medication and although it took quite a few medications to find the right one for me I persisted and that made all the difference. I also started going to therapy and there again, although it took a number of therapists to find the right one, I persisted and when I did eventually find the right one she made all the difference.

podcastYou host a podcast, Living with Obsessive-Compulsive Disorder, with your husband. What made you decide to start it?

One day my husband bought some recording equipment on a wild hare to record a show with his best friend about nerd stuff! After that didn’t pan out he randomly asked me one day if I would ever think about recording an episode where I talked about my OCD. My first response was “Hell no!” Well, 114 episodes later you can see how well my initial response panned out! We recorded one episode and it kind of went from there. I started to really enjoy recording, and talking to Andy about my OCD was very cathartic. We never thought anyone would listen to our little show, but now we have about 500 listeners a week and almost 1,200 followers on Twitter. We first started doing episodes about my story and then when we were done with that we started interviewing other people with OCD, and other people in the OCD world such as doctors, therapists, and other experts in the field. It has been an amazing run and I hope we keep doing it for another five years.

Has interviewing so many other people with OCD helped you deal with your own symptoms? 

It really has. It has helped me realize that I am not alone and that whenever OCD makes me believe I am experiencing something new or “unique” I can reach out to others I have met through the podcast and run my symptoms by them and quickly realize that there is nothing new under the sun when it comes to OCD, and just knowing that fact makes me feel so much better. Having people to connect with through our podcast has been the biggest blessing I could ever imagine. I never imagined that I would have such an incredible support group of friends to which I can turn at a moment’s notice, friends who have been where I am and on whom I can lean and know that they understand completely.

Are there any episodes that really stand out for you, any interviewees you really connected with?

I really connected with Shannon. the content of our OCD is very similar and we clicked from the very beginning. I count her as one of my main confidants and my go-to girl when things are getting rough. I actually had the pleasure of meeting her a few years back when she made a trip to Texas to meet me; it was so much fun and honestly the first time I had ever physically met another person with OCD.

I also connected with Aubrey and have met and hung out with her and her family numerous times as we both lived in Texas at the same time. Her strength is always a source of encouragement to me and her resolve after everything she has been through in her life inspires me to this day.

How are you doing now? Do you still sometimes struggle with obsessions or compulsions?

It has been 14 years since I was diagnosed and about 12 years since I have been on one medication or another. Yes, there are definitely times that I still struggle. I would say that my main struggle now is with pure O. My obsessions and compulsions are internal, mental, and although they are not seen to the world they are still very real, and very real to me. There are triggers that sometimes still bother me like being in a hotel room or touching someone on my “dirty list,” but I find that now that I have the tools to fight these obsessions I can overcome them for the most part as opposed to being completely paralyzed by them in the past. I don’t think we are ever cured—we just learn to cope, learn how to be ourselves despite our OCD.

You’re back to school to get your master’s degree in counseling, and you plan to specialize in the treatment of OCD. What led you to this decision?

The last few years have been very rough for me both physically and mentally. I have had cancer, blood clots, job crises, and major spikes in OCD just to mention a few. Funny how when bad things happen to you it forces you to reevaluate your whole life. That was my experience and when I did so I thought about my life and where I want to be when I’m 40. The answer was not that I still wanted to be at my current job doing the same thing I have for almost 15 years. I want to make a difference in the second half of my life and though I feel I have done so through the podcast, I can only go so far in helping people and telling them they aren’t alone. My help so far has been limited to shared experiences of OCD and I decided that I wanted to take the next step to be able to help people with OCD even more, to do so in a professional manner. My undergrad degree is in psychology and so starting my master’s in counseling in order to get my LPC and LMFT certifications seemed like the logical next step. I am almost finished with my first class and am loving it more than I could ever imagine. Three years and I will be ready to start my own practice and be able to help the OCD community even more.

You recently got an incredible tattoo. What’s the message behind it? 10917902_10155078129465431_5233358205391873201_n

The tattoo means Faith…Hope…Love…I’m still here. The semicolon represents a sentence the author could have ended, but chose not to. The author is you and the sentence is your life. Don’t end it. Start new. Check out projectsemicolon.com. It is a faith-based movement dedicated to presenting hope and love to those who are struggling with depression, suicide, addiction, and self-injury. The reason I got the tattoo was because on my left forearm I have several very severe scars from cutting when I was in my early twenties. I wanted something meaningful to cover them up and that is why I chose the design I did. I’m still here, my story hasn’t ended, and just because I have the history I do doesn’t mean my story is over. There is always hope and now I see hope instead of scars every time I look at my arm.

If you had one piece of advice to offer someone with OCD, what would it be?

Reach out, don’t turn inwards. You are not the only person who has felt the way you feel, you are not the only person in the world who has thought the terrible things you have thought. There are people who know exactly what you are going through and people who want to help. It is only by coming together that we realize we are not alone. OCD is such an isolating disorder that’s what it wants to do, it wants us to think we are depraved and disgusting and alone. The truth is we are not. We have a mental disorder. A mental disorder is nothing to be ashamed of any more than diabetes or cancer is. You are not alone…someone cares.