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Tuesday Q&A: Kimberley Quinlan

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KymQuinlanWelcome to Tuesday Q&A! Today I’m hosting the lovely Kimberley Quinlan, who always makes me feel better whenever she shares a post from her site or comments on anything I post about OCD. She’s wise and thoughtful, and I find her Australian accent very calming (but that’s kind of a side note — her content is what matters most!). See for yourself how wonderful she is.

Although you treat more than just OCD, I know you through the OCD community. How did you decide to focus mostly on anxiety disorders, body-focused repetitive disorders, and eating disorders? From my untrained perspective, they seem to share some similarities, such as compulsive behavior.

While I don’t have OCD, I did have anxiety as a child and adolescent and I had significant anxiety and disordered eating issues in my early adulthood. When I started treating OCD, OCD spectrum disorders and body-focused repetitive behaviors (BFRBs) during my internship, I immediately knew “these are my people.” Being with my clients with OCD brings me so much joy. I get to sit with my clients and we can be perfectly imperfect together. We can cry. We can laugh. We can be vulnerable. We can be strong.

What resonates most for me is my clients’ stories about feeling like you “have” to do a compulsive behavior, despite a deep, inner knowing that it was irrational. This experience is so similar to those who have an eating disorder. Both disorders include an obsession that causes significant anxiety and distress, and both include an array of compulsions that are done to prevent the feared obsession from occurring.

I love the posts you publish on your site, particularly your soothing podcasts. Where did you get the idea to share audio posts as well as blog posts? 

I am a native Australian who moved to the USA in 2001, right after September 11. A few years ago, a friend from Australia emailed me stating that she was struggling with severe anxiety and asked if I could help her. I gave her a list of great books on her specific anxiety and some information about mindfulness, but for days after we connected I wished I could be more helpful.

There are lots of great mindfulness resources out there, but so few are specific to anxiety disorders, BFRBs and eating disorders. I quickly decided I would do a podcast for those who have these specific disorders and have little access to resources. I went out and bought a decent microphone, set it up in my kitchen and I just started talking. It is kind of funny now that I think about it. I think I did my first episode in my PJs while my newborn son was napping.

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Your practice is in the Los Angeles area, and of course it’s not the only clinic for individuals with OCD to choose from. What advice do you have for people who don’t live in an urban area or within a comfortable driving distance of a provider? How about for those whose insurance doesn’t cover proper treatment for OCD?

There are some wonderful books and online resources (Yahoo forums, e-books, online classes, etc.) out there for those who cannot access face-to-face treatment. The International OCD Foundation (IOCDF) is a great resource for anyone wanting to get down to business and work on their OCD. If you are doing a Google search for resources in your general area, just make sure it focuses on cognitive behavioral therapy (CBT), exposure and response prevention (ERP) and mindfulness.

There are some great options for teletherapy (online therapy) with trained therapists from your home computer or electronic device, if that is financially possible for you. Check the IOCDF website for therapists who are trained to help you and offer this option in their practice. There are some laws that prohibit out-of-state teletherapy, so check with the health care provider first.

Finding a good CBT therapist who uses ERP and who takes insurance can be very difficult.  If you cannot find a therapist trained in CBT and ERP, please do not give up. My best advice is to find an in-network therapist who you feel comfortable with and direct them to the IOCDF for resources to help them to understand how to help you. Also, as mentioned above, there are some great books and workbooks for OCD using CBT and mindfulness.  Bring the workbooks to therapy and go through them together. Having the support of a therapist (or even a friend or family member) can be super helpful and can help you to identify issues that you aren’t aware of.

What would you tell a client who doesn’t think ERP would work because she doesn’t have compulsions such as repetitive hand washing? 

Overt compulsions (behaviors you can see) are not the only kind of compulsions. This is a big misconception. Hollywood has done a great job at portraying OCD as a disorder where one might perform a lot of hand washing or crack jumping, but it rarely shows the other compulsions that come with OCD. Compulsions also include reassurance seeking, avoidance compulsions and mental compulsions. You can do ERP with any of these compulsions. If you tend do to a lot of reassurance seeking, you could challenge yourself to not ask for reassurance and sit with the uncertainty that something bad will happen. If you tend to do mental compulsions, you could write an imaginal exposure about your obsession coming true and read it many times per day, while allowing the physical discomfort of anxiety. If you tend to do avoidance compulsions, you can work to gradually touch or be around your feared object or thought. I have learned that there is always a way to do ERP, and ERP is essential to your treatment. You just have to get creative!

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Imagine a parent friend of yours says, “My cousin told me she’s worried she might be a pedophile because she has intrusive thoughts about children. Should I forbid her from being around my kids?”

Oh my stars, no! I cannot tell you how many strange and inappropriate thoughts I have had about my children or my family members’ children. If we are honest with ourselves, I think we all have had them, in some shape or form. The hard part is those with OCD tend to give these thoughts way too much value.

My 5-year-old daughter who doesn’t have OCD told me the other day that she had a “scary nightmare about hurting a kid, but it was while we were in the car coming home from school.” She decided to call these thoughts “day-mares” and she thought that was pretty funny. We give those “day-mares” as much value as we give the nightmares we have during our sleep. I love this idea and I talk with my clients about this too.

Unfortunately, our society is widely uneducated on OCD and how to respond to it.  Stopping the cousin from being around kids will only enforce a faulty belief that her thoughts are valuable and, resultantly, make her OCD worse. In this case, I would tell the cousin to allow the thoughts to be there while she is around the kids. Even better would be to practice having the intrusive thoughts as much as she can. In my office, we play a game called “One-up.” During this game, we take turns coming up with the most scariest thoughts. The goal is to “one-up” each other by making the thought just a little bit more bizarre and frightening than the last one. It’s a great way to practice having scary thoughts without giving too much value to them. I always joke with my clients that my office walls have heard it all.

Do you have any advice for a young person who hasn’t yet told his family or friends that he has OCD? Are there good first steps he can take in “coming out” with OCD?

I love Brene Brown’s idea of trusting those who have filled up his or her “marble jar.” She talks about how her daughter’s elementary teacher uses a glass jar and puts in a marble if the kids are behaving well. If they aren’t behaving well, the teacher takes a marble out.  When the jar is full, the teacher has a party for all the kids. Brene Brown uses this metaphor as a way of determining if we can trust someone. If a friend has shown through many incidences that they can be trusted, their metaphorical jar is full of marbles. Those are the people who I would confide in. If that person has been consistent in showing they can be trusted, and you believe their jar has been full for a while, take a leap of faith and try sharing with them.

That being said, I would be prepared for lots of questions. Try not to take their questions as judgment. The person you shared with might not understand entirely. Try to educate them as much as you can, or refer them to some of the great books or websites out there.

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

In my opinion, overcoming OCD takes two things: Deep desire and hard work. I have seen so many people get better. They come in to my office having spent years struggling and battling OCD. The ones who conquer OCD are the ones who have a deep desire and they go to work. It’s really very inspiring.

When I started working on my own anxiety in my early 20s, I didn’t have a therapist. I would read every book I could find and write extensive notes. I would take long walks while listening to helpful podcasts about the issues I was dealing with. There are lots of people out there who can lead you in the right direction. Remember, deep desire and hard work is all it takes.

Tuesday Q&A: The Secret Illness

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

Do you have OCD yourself?

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

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

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

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Becca Laidler

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

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

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

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

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

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

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

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How can my readers get involved with the Secret Illness?

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

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

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

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

Tuesday Q&A: Jonathan Grayson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Learning to Live with Obsessive-Compulsive Disorder

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

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

Tuesday Q&A: Margaret Sisson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Join a Live Chat with Dr. Lee Baer

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

Here’s how!

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

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

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