Tag Archives: ERP

Aug8

Tuesday Q&A: Michele Carroll

Posted on August 8, 2017 by Alison Dotson

MicheleHeadShot Meet 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 years—but 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.

Jul18

Tuesday Q&A: Erin Venker

Posted on July 18, 2017 by Alison Dotson

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11251846_780769322049276_936520711750468242_n Funny story: Erin Venker lives right here in the Twin Cities and she’s good friends with one of my coworkers, but we didn’t meet until we both attended the 2015 OCD conference in Boston. I knew right away I wanted to connect with her back home, and I ended up asking her to be the vice president of OCD Twin Cities, the local International OCD Foundation affiliate of which I’m president. (Okay, yes, I’ve said this about a hundred times before, but the conference is an incredible way to connect with like-minded people.) Not only does Erin have OCD, she went to graduate school to treat it and is ready to take clients. Call me biased (I’m not, though), but Erin is funny and compassionate and really knows her stuff.

How long have you had OCD? And when did you first realize what you’d been going through might be OCD?

I first had symptoms in 5th grade but I wasn’t officially diagnosed until 7th grade. I was too embarrassed to talk about my intrusive thoughts, so I didn’t realize that was a part of my OCD until years later.

What were your symptoms?

In the beginning, my OCD was mostly rituals of “breathing in” and “swallowing on” the letter A so I would get A’s in my classes. I also did a lot of magical thinking, for example, having lucky and unlucky colors. It soon evolved to include repetitive praying and confessing to my mom thoughts, worries, and “bad” things I did, or else I believed something bad would happen. I frequently had horrible intrusive thoughts, both sexual and violent. That period of my life is fuzzy; I just remember it was extremely painful. Daily life was exhausting. I thought I was a horrible person and was in constant fear that something bad was going to happen to my family.

What do you think about the phrase “pure O”? Some therapists and people with OCD think it’s misleading because people with pure O do have compulsions—it’s just that they’re usually mental, not physical. Is there any benefit to the label anyway?

I’m still on the fence with this. In college and post-college, my OCD evolved into primarily mental symptoms with rumination, trying to“figure things out” by replaying scenarios over and over in my head, a constant fear of offending people, and reassurance seeking.

Even though I do believe there are compulsions with pure O, I think many people relate more to the term pure O. I’ve talked to several individuals who have obvious obsessional symptoms of OCD, but they do not recognize their compulsive behaviors. They do not believe they have OCD without the compulsive aspect and therefore do not seek treatment. This can be extremely distressing for individuals, especially those with pedophilic, gay, sexual, and violent intrusive thoughts. They feel there is no explanation for what they are going through. They may fear they are actually a “pervert” or want to kill someone, etc. The general population also still sees OCD as an anxiety disorder that just consists of handwashing and being ultra-organized (which I am not…). Hopefully the term pure O will lead to more awareness of the other aspects of OCD.

Erin’s kitten, Kitty!

Once you knew you had OCD, how did you go about treating it? How long did it take before you began to feel some relief?

I did not receive the proper treatment for OCD until 14 years after I was first diagnosed. Before exposure and response prevention (ERP) therapy, I saw several talk therapists, but found little relief. When I was 28, I saw Dr. Chris Donahue in Saint Paul. He made exposure scripts during each session, and I would listen to them as much as possible. It was about two months into treatment when I really began to notice a difference in my thought process and feel a huge weight lift.

You’ve used mindfulness to deal with some of your intrusive thoughts. How does it work? Does it work best in conjunction with therapeutic techniques such as cognitive-behavioral therapy and medication?

The first thing I want to do when I have an intrusive thought is to judge the thought and judge myself. Why am I thinking this? This is so perverted. Why is this happening to me? Just stop thinking. I can’t stop thinking about this thought. I cannot stop ruminating about what happened. This leads down a rabbit hole of shame and negative self-talk. I use mindfulness to separate myself from my thoughts. I imagine thoughts as orbs floating and I observe them. I notice my anxiety and accept that it’s there. Sometimes I imagine myself on a diving board looking into a pool. I see my thoughts, and accept that they are there, without diving into the swamp. Imagery and acceptance has been a crucial component of my treatment.

Mindfulness is definitely best used with cognitive-behavorial therapy (CBT) as you begin to recognize the cognitive distortions in your thoughts. Am I catastrophizing this scenario that I have repeating in my head for the past three hours? Is this black and white thinking? Where can I see the gray in this situation?

I have a complicated relationship with medication. I do believe it can be essential in helping people with OCD, but I believe ERP is the silver bullet. Like ERP, it took years before I found a medication combination that worked for me. My hope is that medication will be prescribed more slowly and methodically while encouraging it to be taken in conjunction to therapy. Like with ERP and finding a therapist, do your research on medication and finding a physician’s assistant or psychiatrist who is thorough and understands OCD.

What has been the most difficult part of having OCD?

It’s exhausting physically, mentally, and emotionally. In the heat of the battle, it feels as if you never get a break.

You’ve recently graduated with your master’s in counseling—congratulations! You plan on specializing in OCD, using both ERP and dialectical behavior therapy (DBT), which is a more recent mode of treatment for individuals with OCD. Can you explain what it entails?

Thank you! I was very fortunate to work at the Minnesota Center for Psychology in Saint Paul for over two years as a receptionist. They run excellent DBT programs, and I learned a great deal about DBT while working there. DBT has four modules: emotion regulation, interpersonal effectiveness, mindfulness, and distress tolerance.

The primary concept I use in OCD treatment is being in the present moment, noticing your thoughts and feelings without reacting or judging. ERP therapy is all about feeling and accepting your anxiety until the distress naturally decreases without distracting yourself or resorting to a safety behavior.

I encourage clients to “urge surf” when they are tempted to perform a compulsion or ritual. This is a mindfulness technique used in DBT. I tell clients when they have an urge to ritualize, ride out that urge, notice where the anxiety goes, and imagine surfing to the shore as the urge decreases. We want clients to break the cycle of using compulsions and rituals to lower their distress, and instead ride through the discomfort. OCD is also accompanied by general anxiety, so I utilize the self-care aspects of DBT, but not for during exposures.

You’ve also decided not to require that your clients have insurance, and you’re going to charge on a sliding fee scale. Why?

Due to the rising costs of health care, insurance benefits have increasingly become more complex. Self-pay ensures that the client’s records and diagnoses are entirely confidential documents, as I will not have to submit them to insurance or a third-party payer. The content of sessions stays between myself, the client, and my supervisor, Dr. Vernon Devine, who has more than 46 years experience treating individuals with anxiety disorders.

Due to the nature of exposure therapy, treatment often involves appointments that need to be longer than an hour, multiple sessions a week, at-home sessions, and public exposures. Self-pay allows for treatment freedom as well as the time to get to the root of the problems the client is facing. It makes treatment much more effective. Typically treatment lasts no longer than three months before going to an as-needed appointment basis.

For individuals who are adamant about using insurance, I am happy to refer them to other therapists and give some general guidance for seeking treatment.

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

Be sure you get a therapist who is well versed in ERP. A therapist should help you create a hierarchy to confront your fears and anxiety and not be afraid to challenge you. A therapist does not need to have a PhD or PsyD to be qualified. Several therapists who are MA, LPCC, or LICSW are excellent at treating OCD.

Also, find a support network. If you’re here in the Twin Cities area, join the OCD Twin Cities book club or a support group, and if you’re not, look into support groups and International OCD Foundation (IOCDF) affiliates in your area. I am working on starting an OCD therapy group. Look at the IOCDF website. Read books about OCD and educate yourself. Talking to people who understand and realizing how closely your symptoms relate to others can be a huge step in recovery.

OCD is a misunderstood and extremely painful disorder. However, I have found people with OCD are some of the strongest, most intelligent, and creative individuals. We feel emotions deeply and are highly sensitive. There is a way to harness strength in your OCD and embrace the uncertainty of life.

Oct4

Tuesday Q&A: Kirsten Pagacz

Posted on October 4, 2016 by Alison Dotson

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13166850_1788791191354710_783429034_n Kirsten Pagacz seems to lead a dream life—just browse through some of her photos and you’ll see what I mean. Is that Kirsten with Dick Van Dyke?! There she is at Comic Con, having a blast. And she owns the most charming little store! Her life is pretty good now, but it hasn’t always been that way. Like so many of us with OCD, she suffered in silence and confusion for decades before finally being diagnosed, and that enlightenment was all thanks to chance. I’m excited to meet Kirsten later this week, when she’ll be in town to sign copies of her hot-off-the-presses book, Leaving the OCD Circus: Your Big Ticket Out of Having to Control Every Little Thing.

Like so many other people with OCD, you went undiagnosed for decades. How did you finally know where to turn for help and a diagnosis?

My husband Doug and I knew there was something terribly wrong; however, we did not know it was OCD. Actually twenty years ago, I had never even heard those letters strung together; it was not in the common vernacular as it is today. One day, Doug was listening to NPR and a PSA came on talking about obsessive-compulsive disorder. He could hardly wait to tell me about what he heard. It was kind of a “eureka moment.” The PSA closed with something like, “If you or a loved one might be suffering from OCD, there are OCD specialists in your area.” I got the name of an OCD doctor in my community and was fortunate enough to meet with him the same afternoon.

Once you were diagnosed, how did you feel, and how did you go about treating your symptoms?

I felt relief that the condition had a name, and I felt the biggest relief when my trusted OCD doctor also shared with me that OCD was not my fault and that it was a real medical condition. I was finally diagnosed at 32 years old, after suffering undiagnosed OCD for more than two decades. Part of my recovery and wellness process began with educating myself, reading everything that I could to find about OCD, my perpetrator and killer of joy. One of the first two things that I began doing with my doctor was exposure response prevention (ERP), and cognitive behavior therapy (CBT). I was dedicated to stay the course and dig myself out of the confines of my OCD prison.

Did you tell friends and family about your diagnosis? If so, how did you go about it?

At first, I did not. I felt too vulnerable in the beginning of my mental health journey. I wanted to have some experience under my belt before opening up to others. My first step was expressing myself to my doctor and husband and other folks came later.

You have a brand-new book on the market! How did you decide to write Leaving the OCD Circus?

I have read a lot of books and met with a lot of doctors and I felt it was time to share what I had learned with other sufferers and their loved ones. I constructed this book—text and pictures—to help other OCD sufferers out of their own constriction. I have been writing poetry and collecting imagery, especially vintage art and ephemera, nearly all my life. Pictures and words that really spoke to me at a core level. Some seemed to capture exactly what I was feeling. Some reminded me of pain, some of hope or the freedom I longed for. I’ve sprinkled them like bread crumbs throughout the book to help guide sufferers out of their OCD prison. Sharing and showing the key that I whittled for myself is intended to inspire others on their journey of wellness.

How did it feel to put everything in writing? Did you have any moments when you second-guessed your decision to put your story out there, and if so, how did you move past them?

I never second-guessed any of it; it was time to expose the monster that I had been secretly trying to hide. In a sense I was spilling the beans on my abuser. I did it with determination to help other people get on to their big happy lives much sooner than I did.

You own a charming retro-inspired gift shop in Howell, Michigan, and the website Retro-a-go-go.com. Does running your own business work better for you and your OCD symptoms than going to an office every day?

Yes, running my own business was the way to go for me. I need a home for my creativity, and it is very important to me that I set the tone of the environment and the culture. Corporate life in general was not for me, and OCD or not, I wanted out of that environment. By no means is owning my own business easy, but it is much more preferred. Retro-a-go-go.com is coming up on 12 years and going strong.

You’re married. Do you have any relationship advice for my readers who are either in relationships or who feel that they can never be in an intimate partnership because they have OCD?

Trust, patience, and understanding are keys to a healthy relationship for me. Doug is my best friend and encourages me to be mentally healthy. The healthier I got the more I could clearly see that OCD was affecting other people in my life and I did not like or want that. When I was deep in the throes of OCD more than twenty years ago, I was on the battlefield with OCD, doing everything to be compliant so the “abuser,” OCD, would not pound on me harder for my imperfections. I sort of had no room for anything but me and my OCD. Times have changed, and I have found a way to get on to my happy life. Now it is time to share what I know with others. I feel a real sense of responsibility.

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

OCD is not your fault; it is a real medical condition. One step at a time and make your end goal mental health and wellness. Life is too rich and too wonderful to have it crushed by any illness, especially one that you can do something about. I value my time and my life so much—I cherish it and I keep doing the work that keeps me in the driver’s seat and OCD in the sidecar. OCD might pipe up with “Don’t you want to check the stove one more time?!” and I say, “Not today OCD, not today!”

Sep13

Tuesday Q&A: Stephen Smith

Posted on September 13, 2016 by Alison Dotson

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steveheadshot One of the best things about being an advocate for OCD awareness is connecting with other people who have OCD and hearing their stories, especially when they’ve decided to turn their pain into something positive by helping others.

In this Q&A, I get to learn about something I know very little about: The invention of an app! It was only a couple of years ago that people teased me about my phone, saying things like, “Your phone has buttons!” That’s why I’m so excited to host Stephen Smith, who created nOCD, an OCD therapy app for people who may not have easy access to treatment, maybe because they live in a remote area or they can’t afford to regularly see a therapist. I’m also excited because I didn’t follow a traditional treatment plan myself, and I understand how difficult it can be to find the right treatment provider. Stephen set out to tear down barriers to effective treatment—and from here I’ll let him explain why, and how.

First things first: Like most of my Q&A guests, you have OCD. How long did you experience symptoms before you were diagnosed? And what made you realize that you may have the disorder?

In retrospect, I remember experiencing OCD symptoms in high school. I always feared that I would suddenly get cancer, sometimes to the point where I would make my family take me to the hospital. However, I didn’t realize my symptoms were OCD-related until after my sophomore year of college. I started having very intense, uncharacteristic intrusive thoughts (with mental compulsions), different from the cancer-related ones I experienced before, so I knew something wasn’t right. After a certain point, the thoughts became so extreme that I knew I probably needed to find help. Unfortunately, due to the lack of awareness for OCD and OCD treatment, it took me five different tries to find someone who specialized in OCD. Before I found an OCD specialist, I had one clinician regularly tell me to snap a rubber band on my wrist after every intrusive thought. Another advised me to move away from my family, since they believed my childhood was the root of the problem (bad advice for treating OCD).

How did you feel about the diagnosis, and how did you go about treating your OCD?

I felt very relieved about my diagnosis, because it provided me with much needed hope. Before being diagnosed, I constantly felt depressed and anxious, thinking to myself “What have I become?” When I learned about OCD treatment, I read that other people were going through the exact same thing, and most importantly, many of them got much better.

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Why did you create the nOCD app?

I created nOCD in light of the problems I faced: (1) finding treatment and (2) going through treatment. Like I mentioned before, it took me five tries to actually find a clinician who was well versed and experienced in clinically effective OCD treatment—exposure and response prevention (ERP) and mindfulness-based therapy. That’s why the app incorporates both ERP and mindfulness-based therapy.

Tell us how the app works.

nOCD can help patients mindfully respond to a sudden OCD episode (instead of performing a compulsion) and stick to a structured ERP plan. In the background during use, the app collects objective, real-time data, which can be easily shared with a therapist, family member, etc. The data can then help OCD patients easily explain the details surrounding the war going on inside their head in a non-verbal way, and remember the events that occurred during the week. Lastly, with the new version of nOCD being released in a couple of weeks, patients can engage in auto-generated ERP exercises that naturally will take them through their hierarchies. For instance, during each exercise, users can create in app loop tapes, scripts, drawings, etc. Their therapist can even customize their different exposures for them.

I grew up in a relatively small town and wasn’t diagnosed with OCD until I was in my late 20s and living in Minneapolis. If I still lived in my hometown, I’m sure I’d have to travel to see a therapist. Was this a factor you considered when developing the app? What else went into the decision?

I was very fortunate that I didn’t have to drive very far to see an OCD specialist. If I did, I can guarantee you that I wouldn’t be able to seek treatment due to the combined cost of travel and therapy. At the time, I was barely able to even pay for the local OCD specialist. Each week, I had to work overtime as a trainer/custodian at a San Antonio (Texas) boxing gym, since each therapy session cost me $195. Many who aren’t familiar with OCD treatment may ask: Why was the cost so expensive? The answer: the only OCD specialist in my area was “out of network.” Because these specialists are in such high demand (given the cruel nature of OCD), many can afford to charge whatever price they fancy. It’s another problem in OCD therapy that must be solved, and I am confident technology will eventually solve it. Although nOCD currently has many tools that improves the connection between remote patients and their OCD therapist, we still are innovating keeping both virtual reality and teletherapy in mind.

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Since you’ve launched this business and there have been press releases about it, I assume pretty much everyone in your life knows you have OCD. Was that always the case? Did you feel comfortable telling friends and family about the disorder?

Before I launched nOCD, only a handful of people knew that I have obsessive-compulsive disorder. Now that many know about my journey through treatment, a countless number of people have approached me looking for help. I admire their courage, considering how difficult it is to talk about both OCD-related thoughts and actions. When I was going through treatment, I remember only telling a select number of my family and friends, because I didn’t want my reputation to change amongst the rest of the social circle. Being an NCAA athlete, I’m living proof that mental illness doesn’t discriminate, just like other chronic illnesses. I don’t fit the stereotypical mold of someone who struggles with mental illness that is commonly (and oftentimes subtly) pictured by our media, but really no one does, since mental illness affects all types of people.

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

If you have OCD, you must know that so many people in the OCD community improve each day. OCD is the farthest thing from a death sentence, and in fact, the skills that you’ll acquire in ERP will make you more resilient than ever before. For example, before I severely struggled with OCD, I would always get incredibly nervous before playing football games, giving speeches, and meeting new people. After going through ERP successfully, I am now rarely phased by any of these three things. I now feel as if no challenge is too great!

Aug30

Tuesday Q&A: Aaron Harvey

Posted on August 30, 2016 by Alison Dotson

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AaronHeadShot On March 21, I shared a link to IntrusiveThoughts.org on my author Facebook page and said, “I am so excited about this new website!” And I really was. Not only was it all about the intrusive thoughts that plague those of us with OCD, it mentioned all the secret shameful ones like pedophilia and harm, and—and!—it’s gorgeous. Looks shouldn’t matter, but let’s face it: Important, life-saving information served up in an attractive package certainly doesn’t hurt.

Aaron Harvey is the man behind the site, and I’m honored to host him today. We met in person at the OCD Conference in July (haven’t I told you like a million times that you need to go to the conference?), and he was warm, smart, funny, and open. He’s been talking about things many of us are still keeping to ourselves. But Aaron doesn’t want anyone else to hurt the way he hurt for so long, and that’s what keeps him talking and what inspired him to start IntrusiveThoughts.org. Thank you, Aaron, for being here today and for everything you’ve done to help people with OCD.

After suffering in silence and confusion for decades, you finally realized that your disturbing intrusive thoughts were symptoms of OCD, a treatable disorder. Unfortunately, you’re not alone in this—too many people go undiagnosed and untreated for too long. What sets you apart, though, is that you almost immediately undertook an ambitious project to spread awareness so no one else would have to suffer as long as you had. Where did your idea for IntrusiveThoughts.org come from?

I lived silently in fear for two decades unaware that I had a mental disorder. In March 2014, my mental health had really deteriorated. So I finally got the strength to search “violent thoughts” online. Within seconds, I read a list of symptoms for Pure O. My heart was on the floor. I couldn’t believe what I was reading. Every symptom. Check. Check. Check. In that brief moment, I was relieved and terrified at the same time. What did this mean? The symptom list confirmed to me that I was an animal. As I continued my search, I found an article on the Guardian. The author, Rose Bretecher, humanized the suffering of OCD in an absolutely humble, honest, and beautiful way.

For the next six months, I would only share my disorder with a few close friends and family. And I could only do it by sending them the link and saying, this is what I’ve been dealing with since a child. I had to read it verbatim to my parents because I was too emotional to use my own words.

That’s when I knew I needed to build something that helped to humanize the experience. And two years to the day following my Google search, I launched IntrusiveThoughts.org. I wanted to find people who might be suffering from OCD, but are unaware, just like me. I wanted to build a site that brought comfort to people seeking their symptoms, and push them on a path to treatment, offsite.

My goal was simple. Save one life. Prevent one person from self-medicating. Reach a younger audience to help them live a normal life—one that, sadly and admittedly, I did not have.

If you could pinpoint one thing you want IntrusiveThoughts.org visitors to walk away with, what would that be—and does it depend on who the visitor is?

I want sufferers to realize they have a chance at happiness. I want sufferers and their friends and families to be able to relate to the disorder, understand its brevity, and utilize it as a jumping off point for treatment. You are not alone. And you are no more likely than anyone else to act on your thoughts.

You and I both struggled with taboo obsessions, those sticky intrusive thoughts that are really embarrassing and difficult to talk about. But you were candid and brave much sooner after diagnosis than I was. How did you find the courage to tell wide-reaching outlets such as Self, Cosmopolitan, and Fast Company about your violent and sexual thoughts? And what kind of response have you gotten from readers, friends, and family?

I remember the night before the site launched, my tell-all article was queued up to launch in FastCompany.com and soon my family, friends, clients and employees would know what’s in my head. That night, I really started to question what I was doing. And if it was worth it or not. But ultimately, I laddered back up to my mission to build awareness and advocacy. With my role in the advertising industry, I have a unique opportunity to use my skills to spread that message. So I basically said, fuck it. And let Fast Co know to run the article.

As I started to receive more inquiries about more taboo topics like sex, it certainly was getting even more personal and invasive. But ultimately, I have to ladder back up to my mission—build awareness and advocacy. Sex is a huge part of life. And sex can be an extreme challenge for people with OCD. It’s an imperative that we discuss these taboo topics to help those suffering know that they are not alone, there are tips and tricks to improve your sexual experiences, and you can have an open dialogue with your partner.

I mentioned that you were diagnosed decades into your struggle with OCD. What’s your first memory of an obsession or a compulsion, and what finally tipped you off to the idea that what you had been going through was OCD?

In hindsight, I see there were so many now! But, the first intrusive thought I really struggled with was when I would pray. I grew up in a Christian household, and at night, at 12 or 13, I would say the Lord’s Prayer as I went to sleep. As I reached the end of the prayer, I would have an intrusive thought of my cumming on Jesus’ face. Shocked and horrified, I would beg for forgiveness and repeat the prayer until I could make it all the way through. I remember each time I would get close to the end of the prayer I would be like “OK, almost there,” and then sure enough, I would cum on Jesus’ face.

From there, the sexually related OCD thoughts really took off. I thought I was a pedophile at 13.

A question I often get is “How did you tell your family about your diagnosis?” So I’ll pose this to you as well. Do you have any tips to share with my readers?

I flew to Florida to see my family. We sat on the back porch—Mom, Dad, and I. I pulled up my phone and said, hey, I’ve been dealing with something for a long time. I could see the mood got serious. I was choking up a bit trying to tell them. So I pulled up Rose’s article in the Guardian, and I started to read it line by line. As I hit a particular tough spot, I started to lose it a bit. It wasn’t until I read the entire article that I could start to tell them about how my experiences are different than Rose’s experiences. I told them not to mention it to me or ask me how I’m doing because it’ll just make it worse. In hindsight, I really needed to be more educated.

The home page of IntrusiveThoughts.org is supposed to do one thing: sum up the most important notes of the disorder in a way that is serious but digestible. I hope people who are nervous to tell their loved ones can say, hey, check out this link, this is what I think I’m going through.

AaronBeach

In your interview with Cosmopolitan, you said, “My experience with OCD is that your intrusive thoughts will try to disrupt the most beautiful moments in your life.” I always say OCD is tricky, and it’s a bastard, too: You had upsetting, graphic sexual and violent thoughts while you had sex with your ex-wife, and this took a toll on your relationship. What advice do you have for someone with similar obsessions who may be avoiding intimacy because of them?

Transparency. That’s the most important thing. Because of my distance due to fears of intrusive thoughts, my ex thought there was something wrong with her. It led her down a depressive cycle. It’s really important to share these thoughts with your partner. Beyond that, there are tips and tricks that I’ve learned that might help people. Mindfulness. Focus on the breath. When thoughts get disruptive and start to avalanche, pull your partner closer, go slow, engage in foreplay, live in the moment, don’t worry about the end result. Mindfulness is really key to being able to enjoy a sexual experience. To let the thoughts pass and stay in the present.

So many people with OCD unknowingly undergo the wrong treatment for OCD, usually “talk” therapy where they’re asked to delve into their childhood to determine where this mess all came from. You’re currently practicing exposure and response prevention (ERP) with a therapist. How did you find someone qualified to help you tackle your OCD symptoms, and how did you determine that they were indeed qualified?

The sad part is, you really don’t know. Sure, you can read someone’s credentials on a website where they state “OCD” as part of their specialty, but you really don’t know. You must be educated first. You are the CEO of your recovery. Not some doctor or therapist.

All that said, you do have a few starting points as Dr. Phillipson points out in the OCD3 video series. (1) Work with a behavioral psychologist. (2) Work with someone who specializes in OCD, someone with many cases under their belt, a track record, not a generalist. (3) Interview them to make sure they speak intelligently about OCD, OCD treatment, and ERP. Again, this step requires you to be educated first.

IOCDF has a directory of OCD specialists in the US.

Also, it’s important to note that many people suffering from OCD may also be suffering from depression, generalized anxiety disorder, addiction, body dysmorphia, etc. It’s critical that your behavioral psychologist actually understands these elements and how to build a treatment plan for you.

How are you doing now, a few years after you were diagnosed? I often tell people that the goal of treatment shouldn’t be to never, ever have a bad thought again, because it’s simply not realistic. Do you still experience intrusive thoughts?

I struggle every day. Some days worse than others. No day is easy. I have pretty severe depression as a result of two decades of self-hatred. I have very little self-worth. There are no accomplishments that help to prove me wrong—whether it’s owning an agency, starting a non-profit, etc. So my treatment is very challenging, because when you have harm OCD where you’re plagued with constant thoughts of self-harm, and you also have depression, the combination can be very dangerous.

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

Let people in on your secret.

Jul26

Tuesday Q&A: Sean Shinnock

Posted on July 26, 2016 by Alison Dotson

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

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

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

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

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

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

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

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

SeanBoston

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

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

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

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

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

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

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

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

TeddyBearSean

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

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

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

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

Monster

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

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

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

Remember your “Big Picture.” Embrace uncertainty. Open your mind to the “grays” in life as there is no back and white. Remember that you are not alone. Don’t be afraid to ask for help. Be open with your thoughts and emotions. Remember to treat yourself well. Notice that you are human. Do research and ask questions. Force yourself to stay present. Be compassionate. Take risks. Accept love.

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

Apr12

Tuesday Q&A: Michael Jenike

Posted on April 12, 2016 by Alison Dotson

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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.

Feb2

Tuesday Q&A: Kevin Putman

Posted on February 2, 2016 by Alison Dotson

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Kevin and his wife, Tana

Tuesday, Tuesday, Tuesday! Welcome Kevin Putman, one of last year’s recipients of the IOCDF Hero Award—and with good reason. He’s done a tremendous amount of awareness building in his small community in Michigan and has shared his unique idea for OCD advocacy with the larger community as well: Ping Pong 4 OCD. Maybe you’ve played ping pong at one of the OCD Conferences and met Kevin yourself. He’s funny, approachable, and tireless in his efforts to get people to the right treatment sooner.

Last summer at the International OCD Conference you were presented with the IOCDF Hero Award—and you were very deserving! Tell us what you’d been doing in advocacy to get you on the hero radar.

It was unexpected. I see so many people doing so many big things and I always feel like I’m not big time, or doing big things. It just doesn’t seem like it to me, but I guess it seems like it to someone. There are three main things that I do. One is an OCD support group here in Petoskey, Michigan, where I live, and that’s top on the list for sure. That’s really giving back and helping out. We do that once a month. I really enjoy doing that. The other thing that I have going on — I like to say “we” because it’s the community here — is RUN OCD, which is the nonprofit organization, and the big event is Ping Pong 4 OCD. We do those events here in Michigan and we do them in conjunction with the International OCD Foundation. We’ve kind of branched out and some other people have taken that torch and run with it in their community. I also work with Christian Benway. He’s brought in the disc golf for OCD side of RUN OCD.

You have OCD yourself. Can you share some of your OCD story with us? When were you diagnosed, and how did you realize something was wrong—and that it could be OCD?

My formal diagnosis didn’t come until I was married with kids. Actually, my wife was the one who diagnosed me. I self-diagnosed, but I probably didn’t get an official diagnosis until I was almost 30. Looking back on it, I know that I have had OCD since forever. I can’t think of a time that I didn’t. But in college I was taking a psychology class, Psych 101. We were talking about anxiety disorders, and one day the topic happened to be OCD. I’m just some college kid taking notes, but some things my professor was saying were relating so much to me it was crazy. It was like someone was punching me in the stomach every time he said, “Someone with OCD does this, and they do this.” It was real stuff. At that point I still wasn’t convinced; I thought, “Oh, this is just a coincidence.” But from there I started to pay attention more, and once I got married and started living with my wife she started noticing a lot of stuff—the checking, the rechecking, and a lot of other things I was doing that revolved around OCD.

Once you knew it was OCD how did you go about treating it?

Well, at first, I went to a counselor locally. I went to a handful of counselors here in this town, and the unfortunate part was that there wasn’t really anyone who knew what to do, so I wasn’t treated how I needed to be treated for a long time. I had a handful of counselors where I would go in and they would just accommodate me and reassure me— it was almost like my weekly reassurance session. I’d save up all this stuff I was anxious about and I would say, “Here’s what’s going on” and we’d talk about how things are going to be all right, it’s gonna be okay, the total opposite of what we needed to be doing, which was to build that anxiety up. So it wasn’t really until I got into the Houston OCD program that I started hitting hard and started working on ERP. My wife is a counselor, and she had read Loving Someone With OCD, and that book talks a lot about the family accommodation piece. She had already started doing that before I went to Houston; she was not accommodating at all at home because she’d read that for her to be checking locks and checking the stove for me was not the right thing to do. That was a huge, huge benefit to have her. To have your wife be a counselor is a lucky thing.

So do you live in a relatively small town? Is that why there weren’t that many people who knew about it?

Right, exactly. I live in Petoskey, Michigan, which is a super small resort community, and anyone who really specializes in OCD would be in the Detroit or Lansing area, which is like three hours away from here. Our counselors up here have to be so broad; they can’t just focus on OCD because they wouldn’t have enough clientele. They have to do the full gamut, and that means they may or may not be up on what the correct practices are. Now that I have gone to the conferences and gone to the Houston OCD program and I’m running this OCD support group I’ve made myself available in the community as an OCD resource. So whenever I talk to anybody, whenever anyone calls me, and they tell me that they’re in counseling, I always ask, “Have you ever heard of ERP?” I would say 99.99 percent of the time they say no, and they’ve been treated by a counselor for a while. It’s a little bit scary to me, still, but not everybody knows it. I’ve been trying to bring that in, too, when I talk to people. I just met with someone the other day, and they were sharing with me, and they had never heard of ERP. They’re a big research type of person, so I said, “Google it, and if you’re not doing that with your counselor, you need to find someone else.”

How did you go from that to the Houston program? Did you find out about it on your own, like doing Internet research?

My wife found it. I have “just right” OCD; my OCD revolves around checking, and I do a lot of symmetry and over-responsibility. All of my symptoms crashed down on me all at once. I didn’t want to move one way because it didn’t feel right, or I’d have to move back the other way. I didn’t want to turn anything on because I’d have to turn it off. I was sinking into this deep, deep depression, and I was suicidal. I was not functioning. I was on the couch, burying myself underneath a sleeping bag, and I was making a plan to kill myself. My wife was like, “Okay, we’ve got to do something.” She called Community Mental Health here in town and they said, “O-C-what?” It was like, “Are you kidding me?” At first I was going to go out to McLean in Boston. That was the original plan, but they were full and couldn’t take me. This was on a Thursday or Friday, and my wife said, “No, he’s got to get in now.” She called the Houston program and they said, “All right, we’ll see you Monday morning,” and we went.

Did you have kids at this point?

I did. My kids at the time were three and six.

You started a nonprofit called RUN OCD. First of all, explain the name for some of my younger readers.

[Laughs.] Isn’t that funny? We were looking for a cool T-shirt to make, so it wasn’t supposed to be what it happened to be. I’m a big hip-hop guy from back in the day, so we looked at the logo for RUN DMC, the rap group from the 1980s, early ’90s. Their logo looks exactly the same except it says RUN DMC and ours is RUN OCD. So at first it was just a play on words and a T-shirt, and then when Ping Pong for OCD started happening and Christian and I were both speaking and we were doing support groups and events, we realized maybe this is bigger than we thought it was going to be. People will always ask, “What does it mean?” I wish there was a straight answer but there’s not. It’s kind of what you want it to be. A lot of the time we say it’s to run your own OCD or to take charge, don’t let OCD run you, run your own OCD. It’s neat to see who gets the RUN DMC reference and who doesn’t. I like that it’s ambiguous because it makes people ask questions. You walk down the street with a RUN OCD T-shirt on and someone’s like, “What do you got going on there?” And it opens the door for conversation and for sharing. It’s inevitable—if you talk with someone they’ll be like, “Oh my gosh, my cousin, my brother, myself” has OCD, and it opens that door. I have met so many people and built so many relationships just because I was walking down the street wearing the shirt or the hat. I’ve considered changing the name, I’ve considered adding a tag line, I’ve considered all these things, but I really like that people have to ask because then the conversation can start. KevinPingPong

Let’s talk about ping pong. I love it, but what I like most about it is seeing how many times my partner and I can go back and forth, so I wouldn’t win any tournaments. What gave you the idea to introduce ping pong to the OCD conference?

We’d done a couple of ping pong for OCD events in Michigan, and they were fun. And I’d been going to the conferences and it seemed like you’d get into the evenings of the conferences and there was not a ton to do. They had some evening activities, but a lot of times the conferences are in these gigantic towns and you don’t necessarily want to venture out into San Diego or Chicago—of course there’s cool stuff to do, but you’re meeting people and you just end up staying right in the conference hotel and want to spend time with these folks. So I thought, “Man, we have all these big conference rooms that we use during the day but we don’t use in the evenings, so wouldn’t it be neat to just clear them out and put in some ping pong tables?” Then people can come in and they can hang out and it’s a nice networking time, a nice ice-breaking time. The kids really like it too because the conference has a bunch of kids and they can’t go out to the bars or the restaurants, really, and they’re looking for something to do in the evening. It’s something that people of all ages and all skill levels can participate in. We tried it once and people liked it and we kept doing it.

I think most of us with OCD have pet peeves about how misunderstood the disorder is and how the misconceptions are perpetuated. How do you feel about things like someone saying, “I’m so OCD about how I organize my clothes”?

Some people get all fired up about that kind of stuff. I know there’s a huge side of the OCD community who thinks that’s blasphemy and thinks it’s disrespectful. That bothers me none. What bothers me is people in the OCD community who are bothered by it because I think it’s silly. I think there’s so many more places that we can put time and energy into than chasing down someone who says, “Oh, I’m so OCD about organizing my groceries.” I just think it’s a null point and I don’t care one bit. I really don’t.

What would you say is your biggest OCD awareness accomplishment?

The first ever Ping Pong 4 OCD tournament we did in my hometown in 2011. It just came out of nowhere. The response from the community was super cool. Every person I talked to said yes, everywhere I went somebody donated something, gave me something. It was just really cool and the neat part about it was that the whole idea behind Ping Pong 4 OCD stemmed from starting a support group. When I was in the Houston OCD program I had found huge value in the Houston-area OCD support groups, which weren’t affiliated with the program. It was people coming from the community and all walks of life, different shapes and colors and sizes, and I thought that was so cool. My therapist talked to me at discharge about how I needed to find an OCD support group when I went home, and I said, “We don’t have one.” She said, “Well, you’re going to have to start one.” I was trying to figure out how you start an OCD support group. What, you put a sign in the door and say, “All right, OCD support group tomorrow night!” You’d be sitting in a room all by yourself. We needed an event or a gimmick, basically, to get people together to get this support group started, so we organized a ping pong tournament. We just had this small little table in the corner that had some books and some pamphlets about OCD awareness and a sign-up sheet that said, “I’m interested in attending an OCD support group.” We never announced that we were doing that; it was just ping pong all day long, but the people who needed to find that table, and the people who needed to put their names on that list, did. From that list we got the OCD support group started and we’re still doing it five years later.

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

Laugh. Because it’s really funny when you think about it, the things we do. It’s just funny. And if you can use humor as your friend I think that’s a huge piece of recovery.

Jan6

15 Things People with OCD Want You to Know

Posted on January 6, 2016 by Alison Dotson

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I love talking about OCD, and it’s always interesting to see how my words are used in the final product! It’s an exercise in letting go and giving control to someone else. This time my interview—as well as several others from both people with OCD and those who treat it—was worked into a list of 15 Things People with OCD Want You to Know.

What do you think? Would you have added anything? Removed anything? Expanded on anything?

Dec1

Tuesday Q&A: Wendy Mueller

Posted on December 1, 2015 by Alison Dotson

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Wendy January 2014 I don’t know what’s harder to believe, that it’s Tuesday already or that it’s December already. Here in Minnesota we’re finally getting our first inches of snow. Today’s guest, Wendy Mueller, is always eager to remind me that where she lives — Southern California — she never has to deal with snow or cold temperatures.

But Wendy’s full of useful information, too, and isn’t just adept at stating the obvious (just kidding, Wendy!). After recovering from OCD over 20 years ago, Wendy has dedicated much of her time and energy to helping others with OCD; she runs a large online support group and knows what others need to hear in order to face OCD head-on. I really have to give her credit, too — not to date Wendy, but this was before the Internet was always accessible, before you could take a photo on the bus and upload it for all of your friends to see a second later. She sought out support and stuck with it, eventually giving back to the same community that helped her so much. (But seriously, what is Prodigy?)

Let’s get Wendy’s take on it all.

You run a huge online support group called the OCD-Support List. How did you become involved with this great resource?

Twenty-eight years ago, I developed severe OCD upon the birth of my first child. For the first year and a half, I didn’t even know what was wrong with me. I hid my OCD symptoms from everyone around me, because I thought I was going crazy and I didn’t want to be put in a psychiatric hospital. Once I found out that I had OCD (after reading an article about OCD in Newsweek magazine in early 1989), I immediately started to seek out some sort of support system so that I could talk to other people who had OCD.

When I got my first computer in 1990, I started looking around the various health “bulletin boards” on the Prodigy computer network, but I was unable to find any support groups related to OCD. So I decided to start one on my own. I created a new topic for OCD and posted a message asking if there were other people suffering from OCD, and — little by little — my small online OCD group began to grow. I moderated that Prodigy group for about seven years (we eventually had about 60 members of the group), but I also joined another larger online OCD support group that was being moderated by Chris Vertullo, an OCD advocate. Her group had hundreds of members, and it was a very active support group that also included regular contributions from several OCD experts, including Dr. James Claiborn and Dr. Michael Jenike.

When Chris decided to “retire” from leading the group in 2001, I took over leadership of the group with a few hundred members. Over the years, the group has snowballed into a huge group that now has more than 5,200 members from all over the world. Dr. Claiborn still contributes daily to the group, and I keep a close eye on the messages being posted so that we always stick to the topic of OCD.

So, the shorter answer to your question is: I started up an online support group back in 1991 because I personally wanted to communicate with other people with OCD. For four years, I was part of the online group as a sufferer. However, I recovered almost completely in 1995 (thanks to taking medication and learning exposure and response prevention [ERP]), and ever since then, I have been able to encourage and give hope to others who are still struggling by telling people my own story of recovery from severe OCD and depression.

Obviously you find value in online support groups. What advantages are there to meeting online vs. meeting in person?

There are some great advantages to meeting in an online group, as opposed to an in-person group, but the first thing you need to do is make sure that you find an online group that is well-moderated by someone who regularly reviews the posted messages and makes sure that people stick to the topic of OCD. It’s also important to have a closely moderated group so that the moderator can correct any misinformation that is posted and also so that the moderator can intervene in the case of any angry or hurtful comments that might be posted. It’s important to have the group moderated by someone who is there regularly, keeping an eye on things on a daily basis. It’s also good to find a group that has contributions from OCD expert doctors/therapists, so that members are getting the best information and guidance possible regarding the proper treatment for OCD.

An online group is a terrific choice for people who have no local access to OCD treatment in their area or who cannot afford OCD treatment. Also, many people with OCD find it extremely hard to talk about their OCD with others — even with a therapist — but one can remain completely anonymous in an online group so that no one ever knows your true identity. You can even join an online group just to read the messages posted by other members; you can remain quiet and just “lurk,” without ever having to say a word. It can be extremely helpful to read the discussions going on between other members of the online group as well as the contributions from the OCD expert therapists in the group.

With an online group, there are no restrictions to the time of day that you can seek support. There are people posting and answering messages at all hours of the day — even in the wee hours of the night — so you can almost always get an understanding and helpful response from someone, no matter what time of day you post a message to the group.

You developed postpartum OCD after your first daughter was born, and like so many other mothers you were afraid to tell anyone what you were going through — you didn’t want your child taken away, or to be involuntarily committed to a psychiatric ward. Of course, those fears were unfounded, but you didn’t know that at the time. When did you finally realize you had OCD, and how did you make the connection?

I finally realized I had OCD when I came upon an article in Newsweek magazine in which Patricia Perkins (one of the original founders of the International OCD Foundation) was interviewed about her OCD and about the work of IOCDF. As soon as I started reading that article, I knew — without a doubt — that’s what I had been struggling with for the last 18 months since my daughter was born. The article described exactly the type of “crazy” things I had been doing all that time — checking door locks and stove knobs, compulsively lining things up neatly and symmetrically, counting to a “magic” number in my head whenever I did things, compulsively repeating actions over and over until it “felt right,” and worrying excessively about almost everything I did all day long. As soon as I read that article, I told my psychiatrist (who was treating me for depression) that I knew I had OCD, and that was the beginning of my road to recovery. The first thing I did was join IOCDF so that I could receive their regular newsletters, and I started attending their annual conferences, starting with the very first one in October 1993 in Minneapolis.

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

At the time I finally realized that I had OCD, I was severely depressed and extremely disabled by severe OCD, depression, and anxiety. I never slept well, and I cried throughout the days, feeling hopeless and helpless about my life. At that time (1989), I believe that Prozac was the only medication that had come onto the market that was being prescribed for OCD, so I was very willing to give it a try (which I did, but was unsuccessful due to side effects I couldn’t tolerate). I also started reading any books about OCD I could get my hands on, like The Boy Who Couldn’t Stop Washing by Judith Rapoport, Getting Control: Overcoming Your Obsessions and Compulsions by Lee Baer, Stop Obsessing! by Edna Foa and Reid Wilson, and When Once Is Not Enough by Gail Steketee and Kerrin White. The more I read about OCD, the more hopeful I became that I would eventually get better.

Unfortunately, I had a difficult time finding a medication for OCD that didn’t cause initial side effects that I found intolerable. Prozac caused me to be very agitated and anxious, so I had to give up on taking it after a short while. In subsequent years, at different times I tried Anafranil, Zoloft, and Paxil, but those three medications caused me to be very disoriented and confused, so I was forced to give those up also after a short period of time.

Just when I thought I was never going to be able to tolerate any of the OCD medications, a friend with OCD told me to try Prozac in liquid form so that I could start taking it at a very tiny initial dose and very slowly increase the dose over a long period of time, which would enable me to gradually get used to the medication and hopefully avoid any bad side effects. It worked beautifully! It took me about four months to go from 1 mg/day to 60 mg/day Prozac, but once I got up to 60 mg/day and stayed at that dose for about five to six weeks, I really began to notice my OCD fading away. It felt like breaking out of prison! Once I got much better on the medication, I was then able to really dive into learning how to do ERP for my OCD. Prior to taking the Prozac, I had not been successful with ERP, because the OCD was too strong for me to fight through the anxiety. Once the medication successfully kicked in, then I started to make progress with ERP. The combination of medication and learning ERP brought me to almost complete recovery from my six years of severe OCD and depression.

Wendy and Lisa

Both of your daughters have OCD as well. How did your own experience with the disorder help you recognize the symptoms and get them through it? Also, what would you tell someone who already knows they have OCD and worries they’ll pass it along to their children?

A lot of people with OCD worry that they shouldn’t have children, for fear that they will pass their OCD on to their children. This is certainly a possibility. But if you have OCD yourself and know the proper treatments for it, then you are the best possible person to recognize OCD in your child and to guide your child to the correct treatments. Because I knew what it was like to suffer from OCD (and recover from OCD), I knew what my two daughters needed when their OCD started to flare up when they were kids. I was able to recognize their OCD symptoms when they first appeared and promptly seek out the proper therapy and medication for them. They are now both in their 20s and are doing well.

You’re doing well now. How do you keep on top of your symptoms? How long has it been since you really struggled with OCD?

I was very fortunate that both medication (Prozac) and ERP worked so well for me. Because Prozac made such a huge difference in my recovery, I have continued to take the 60 mg/day Prozac for more than 20 years now. I feel like the medication saved my life. I’m still so thankful for my recovery that I have never considered stopping the Prozac in all those years. (I’m fortunate that I don’t have any adverse side effects to the medication.) Because the Prozac continues to help and because I know how to use ERP whenever I get an OCD “urge,” I really have not struggled with OCD for about 20 years.

Once you learn how to use ERP correctly and effectively, you have the tools necessary to fight any OCD issues that come your way. Even if your OCD appears in a form that it has never taken before, once you know how ERP works and how to apply it, you can conquer any type of OCD that comes your way. Learning how to use ERP is hard work, but once you get the hang of it, it really works. I absolutely know that I’m much stronger than my OCD now, so I no longer have a fear of it tormenting me like it did in years past.

How can someone with OCD join your support group?

Anyone can join my online “OCD-Support” group by sending a blank email to OCD-support-subscribe@yahoogroups.com. My group is not only for individuals with OCD but also any family members and friends of people with OCD, as well as treating professionals.

In addition to my large general OCD support group, there are many other well-moderated groups on YahooGroups for more specific OCD issues or groups of people, such as groups for Teens with OCD, Parents of Kids with OCD, Pure-Obsessional OCD, Scrupulosity, Compulsive Skinpicking, Parents of Teens and Young Adults with OCD, and many more.

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

Never lose hope that you can conquer your OCD. The evidence-based treatments (CBT/ERP and the OCD medications) really do work. Believe in them. Work hard at learning how to do ERP. Your persistence and hard work will pay off in the end. But never, ever lose hope. You really can get control of your OCD and return to living your life the way you want to live it.