Alison Dotson's Blog, page 12

Pure O in the News

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

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

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

From Adversity to Advocacy: Interview with Jeff Bell

I’ve been volunteering with OCD advocate Jeff Bell’s great organization, A2A Alliance, and earlier this week he interviewed me for their new series, A2A 1-on-1. It was so much fun!

Tuesday Q&A: Tim Blue

Tim Blue and I met the way I’ve met so many of my incredible “OCD friends” — at the national conference the International OCD Foundation puts on every summer. (Seriously, you should go!) He’s such a nice guy, and we have a lot in common, which is always refreshing. In fact, that’s kind of the idea behind his blog and Facebook community, To Know We Are Not Alone: There are others out there like us, so let’s help each other! Let’s not suffer in solitude when someone else with OCD is right there on ye olde Internet ready to chat.

Q. You have a great blog — and also a Facebook community — called To Know We Are Not Alone. How did this come about?

A. Frankly, my blog came about because I battle intense loneliness, especially in regard to my mental illnesses. I’ve found that people who are mentally ill tend to either keep it to themselves or keep to themselves. It’s very hard to find people who truly understand. I originally intended that the blog would become a forum for community. It has, but only to a very small extent. I guess it has served to help me find people who appreciate what I’m doing, but I don’t think it has done much to help others find new friends. I’ve decided to take the next step with it and move toward forming a nonprofit that aims to educate and encourage, but once again, I’m very hopeful that I will figure out a way to help other struggling people find each other.

Q. Tell us more about why you decided to start a nonprofit. Do you have anything in the works?

A. The truth is that, over the past few years, I have found myself unable to sustain a go-into-the-office-every-day sort of existence. I’ve had to turn my attention to my mental health in ways that mean radically altering my life. But at my core, I love connecting with people, helping people, teaching people, etc. The reason I’d like to take the next step is that I find myself at a crossroads in my professional life, and I can’t think of anything I would rather do than to turn my passion for writing, teaching, and speaking into something that might (fingers crossed) grow into something bigger than just me writing my blog. I’d like to get others involved, and I’d like to expand the resources I offer, and starting something official seems like a good next step.

Q. Why do you think knowing we’re not alone is so therapeutic?

A. When I taught high school English, I used to periodically ask the question, “If you could live forever, would you want to?” The first question was always, “Would my friends and family live forever too?” When I told them “no,” about 90% said they wouldn’t want to live forever. I suspect the other 10% would eventually regret it, too, because I think that human beings are “herd animals.” I can’t speak for others, but I know that I have battled a fierce loneliness my entire life, and I’ve always looked for ways to find out if others are thinking like I think or feeling like I feel. When I find someone who really understands my idiosyncrasies and oddities, it’s like getting a new lease on life. I don’t know exactly how it all works, but I think quite simply that our hard-wiring is for being in a group, and that requires not just physical presence but emotional, mental and even spiritual connection.

Q. Your blog fulfills its mission: You do a tremendous job at helping people with mental illness — and their loved ones — feel less alone, and that’s because you’re candid. I know how hard it can be to be so open about something many people consider embarrassing or taboo. Did you make a conscious decision to be so transparent, and did it take a while to get to where you are now?

A. What a great question! I don’t remember making a conscious decision, but I spent over 30 years hiding my struggles from everyone. Those closest to me knew I had my quirks and anxieties, but we never talked about it, and I never pursued professional help. I guess eventually it sort of just burst out of me — first in the form of a self-published book and then in the form of the blog. It took so much energy to pretend that I just couldn’t (or maybe wouldn’t) do it anymore. I’d call it more an act of desperation than a conscious decision. But I wouldn’t go back to faking it for anything.

Q. One of the things you’ve been candid about is self-harm–you’ve cut yourself at times. What would you tell someone who’s never done this and doesn’t understand why anyone ever would?

A. I could talk for a long time about this subject because it’s so misunderstood. I remember in the past, seeing students with the obvious scars from cutting themselves on their forearms. I didn’t understand it at all, even after I had been diagnosed with OCD and depression. Then…and I’m going to share something I’ve never shared openly…I had an experience that led me to understand self-harm. A family member and I had had a very rocky relationship for over a decade, and one day I decided to text him to see if we could try to talk things through. What came back was an onslaught of hatred unlike anything I’ve ever experienced. He accused me of faking my mental “issues,” said my wife and kids would be better without me, and told me he’d heard through the grapevine (despite living 1000 miles away) that the employer I had recently left due to depression was glad to finally be rid of me. At the time I had given up drinking, but that night I took it back up in earnest, and later that night, well past midnight, I sat there drunkenly feeling like every fear I had about myself and my worth had come true. It felt like this relative had spoken for everyone, and I wondered if what he had said was in fact true. There was no conscious decision to do this, but I was in so much emotional pain that I took out the pocket knife from my pocket and just started digging the blade into my arm. Rather than hurting, it sent a wave of relief coursing through me, and I kept going. Eventually, over half of my forearm looked like a rabid cat had decided my arm was the enemy. After I had done this once, it started to become a somewhat natural reaction to the emotional pain I felt, and I did it many more times (and I’m not saying I’ve done it for the last time either, if I’m being honest). Eventually, I came to find out that the reason people do this isn’t a cry for help, as so many assume. It’s actually basic chemistry: For some reason, when one is in intense psychic pain, physical pain actually releases chemicals in the brain that bring release. As I understand it, it’s sort of like a drug high in terms of how it relieves one’s brain. I’ve gotten so I can actually test how depressed I am by how appealing self-harm is. As I sit here now, it holds absolutely no appeal. I just think, “Ouch!” But when my brain gets turned upside down, so does the appeal of hurting myself.

Q. As you might know, my blog is primarily about OCD because OCD is my primary diagnosis — so let me as a few OCD-specific questions. How did you first realize you might have OCD? And once you were diagnosed, how did you go about treating it?

A. OCD is also my primary diagnosis. I wasn’t diagnosed until I was 25, but I remember symptoms from my earliest years of life. Growing up, I was just aware that I was more anxious that others, so I just thought of myself as anxious, not obsessive. Finally, in my 20’s someone mentioned that I should look into getting medication for my “anxiety,” and I reluctantly went to a psychiatrist. He diagnosed me within about 12 seconds with OCD. It was that obvious to him, and looking back, I can see why it would be so blatant to someone who knew what to look for. Like many, I was a reluctant patient for a while. I went on and off of meds, not to mention starting over and over with various doctors, for years. I resisted the idea of medicine and thought that eventually I would just figure out the magic cure. It took a breakdown that landed me in the hospital before I finally surrendered and starting working on my symptoms in earnest. Thus far, I have found medication quite helpful as well as mindfulness meditation, which, to me at least, seems very, very similar to exposure and response prevention therapy. Both involve accepting one’s situation just as it is, and that, oddly enough, is the key to a healthier view of the world you’re living in.

Q. Can you tell us more about your obsessions and compulsions? Are there any that seemed more stubborn than others?

A. My obsessions and compulsions have gone through various phases. As a kid, I went through a couple of years of germophobia, washing my hands incessantly and so on. As an adolescent, my hyper-religious upbringing brought on a severe case of scrupulosity: I was convinced that every thought and action was somehow tainted, that I wasn’t really a Christian, so I would say the sinner’s prayer (asking Jesus to save me from my sins) literally countless times a day. I also had magic numbers to ward off the devil. Later in my teen years, my obsessions took on a sexual nature. I had been raised to remain a virgin till marriage, and like any other teenage boy, I put a very high value on sex. But I became convinced that I would be impotent once I could finally have sex. The incessant “checking” involved all sorts of things I won’t detail here, but I was never without the fear that the one thing in life I wanted most — sex — would be stolen from me by impotence. Finally, my obsessions have taken on the form of relationship OCD. Basically, I can’t quit evaluating or questioning my relationship with my wife. We’ve been married 13 years, but I still examine our relationship as if we are dating and thinking of marriage. It’s truly torture because I’m made and remade this decision so many times, and I’m committed to my wife and kids, so I know it’s a useless question. But it won’t stop hammering my brain. There’s never a moment I’m not evaluating and re-evaluating my relationship with my wife. If I’m with her, everything she says, does, wears, implies, etc. becomes part of this pile of evidence in my brain about the state of our relationship: Is it as good as it should be? What is my level of attraction to her at this moment? Am I in the right relationship? Even when we’re apart, I might look at others’ relationships and compare them to my own or look at the way some other woman does something and compare it to how Ann does the same thing. As you know, it’s torture. I’d give anything to make it stop; I know it’s illogical, but I can’t turn it off. Even in the middle of the night.

Q. Your book, Compelled: A Memoir of OCD, Anxiety, Depression, Bi-Polar Disorder, and Faith…Sometimes, discusses your Christian upbringing and how it affected your mental health. Specifically, instead of your struggles being as symptoms of a mental illness, they were seen as spiritual failings, as a lack of faith. This is far too common in many faith communities. How did you finally break away from that and get the help you actually needed, beyond prayer?

A. Wow. This one is huge. What would I give to have the hours back that I spent praying or worrying that I was not in God’s will?! When someone gets cancer, we consider them crazy if they refuse treatment in favor of just trusting God. But with mental illness, we are still pretty far behind in this regard. Until people see mental illness as every bit as “real” as a broken leg, we won’t be able to fully solve this problem of people thinking prayer can heal your OCD. Our friend Chrissie Hodges, who works with mentally ill patients all day, said that almost to a person, people’s various mental instabilities have something to do with religion. I also recently heard a statistic that something like 45% of evangelical Christians think that mental illness can be cured through prayer alone. For me, I still live very deeply entrenched in a community/social circle of evangelical Christians. I have people tell me almost every day that they are praying for me. Within the mental health community (counselors, groups, doctors) I think religion should be pretty much off limits. I’m fine with people telling others that if they have a faith tradition that they find helpful, by all means embrace it. But to me, when someone pushes their religious ideas on you, it would be just like me telling you that you need to take the same medications I’m taking. Obviously, that’s ridiculous. But with religion, that’s what people do because they believe they’ve found “the answer.” Religion helps a lot of people, but they need to be extremely careful about how they share that with others, because religion has also probably done as much damage to people as any other entity in history other than maybe the abuse of sex. These days, I am very much of the belief that one should evaluate for him/herself what is helpful and go with that. Meditation helps me a lot. Certain medications have helped me a lot. Meeting with friends who just listen and don’t prescribe helps me a lot. Maybe prayer will help Bill and nature hikes will help Sally and yoga will help Susie. We need to encourage each other to keep taking the next step, but we shouldn’t tell them exactly what that step must be.

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

A. I would give them the same advice I give myself: give yourself grace; you are fighting a very hard battle. Don’t berate yourself for something you can’t control. All you can control is whether or not you keep trying new things to see what might help. Don’t expect to get a magic cure. Try to find things that will help you take a small step forward. For me, Mindfulness Meditation has been a helpful step. For you, maybe it will be smoking cigars (that’s another of mine too). But I don’t want to tell you what will help you. There’s a lot out there. Just try something. Determine what a reasonable time frame is and if it’s not working, find the next thing. And find friends! And when you find them, introduce them to me, because I need them too!

Tuesday Q&A: Michael Jenike

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.

Q. 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?

A. 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.

Q. 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?

A. 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.

Q. 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?

A. 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?

Q. 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?

A. 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.

Q. 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?

A. 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.

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

A. 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.

Q. 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? 

A. 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.

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

A. 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.

A Walk in the Park

I can be really scatterbrained about the very thing that keeps my brain from scattering: my medication. For those paying attention, yes, this has happened to me before. I’ve run out of medication and have gone through withdrawal symptoms before finally getting more, and it’s always terrible.

Today was one of those days. Since the pharmacy has always given me some pills to keep me going until my doctor refills my prescription, I expected the same tonight.

Nope. “All I can do is call your doctor right away tomorrow,” the pharmacist told me after I waved her over and explained I can’t not have my medication. “I’m already experiencing withdrawal symptoms,” I told her.

No dice. So I broke down in Target and left a blubbering message for my psychiatrist. I’m not even sure she’ll be able to understand it.

I called my husband on my way home, sobbing.

“Are you on the bus?” he asked. No, I was walking. “Why aren’t you on the bus?”

I walked through the park near our house to get home, crying the whole way. I was walking so slowly a man passed me.

“Hello!” he said.

I tried to say hi but it came out in a whisper so small he couldn’t hear me.

The man flipped his hand and said sarcastically, “Or not.”

I found my voice and said, “I said hi. I’m just crying.”

He kept walking a little longer and then turned around and asked if I was okay. He walked back toward me.

“Yeah,” I said, not very convincingly. I decided to be honest. “I just really need my medication.”

“Oh,” he said. “I’ve been there. I get depressed and I have panic attacks. I cry a lot!” He walked with me the rest of the way and told me to take care, to eat some amazing food.

The interaction reminded me of two things:

1. We should never take it personally when someone doesn’t act happy to see us, or doesn’t return our enthusiasm. I was having a terrible time, and even my attempt at being friendly failed.

2. We’re not alone. That guy cries, too. He initially wrote me off as rude but he listened to me and seemed genuinely concerned. And maybe hearing me sniffle made him feel less alone, too.

I promise I’ll be better about keeping on top of my medication.

Identifying and Supporting Students with OCD

I’ve had OCD since I was a kid, but I didn’t actually know that until I was in my late twenties. That’s why I’m glad my publisher, Free Spirit, asked me to write a post about how to spot signs of OCD and support any students who might have it. It’s not easy! Anything you might add?

Tuesday Q&A: Kevin Putman

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.

Q. 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.

A. 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.

Q. 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?

A. 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.

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

A. 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.

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

A. 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.”

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

A. 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.

Q. Did you have kids at this point?

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

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

A. [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.

Q. 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? 

A. 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.

Q. 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”? 

A. 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.

Q. What would you say is your biggest OCD awareness accomplishment?

A. 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.

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

A. 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.

Tuesday Q&A: Jeff Szymanski

I know what you’re thinking: How do you pronounce that name? As far as I can tell, it’s something like Shhhhhmanski. But here’s the thing: You can probably* just call him Jeff! He certainly deserves the respect and honor of being called Dr. Szymanski, but he’s friendly and open enough that you’ll find yourself on a first-name basis.

*For the record, he hasn’t authorized me to say you can call him Jeff.

Jeff Szymanski has undertaken the incredible responsibility of leading the International OCD Foundation. It’s a job he seemed born to do. He doesn’t have to have OCD himself to go to bat for us — he seems as genuinely frustrated as we do when he hears “I’m soooo OCD” or that OCD is all about a germ phobia. He’s working hard to overcome stigma and spread the awareness OCD — and its sufferers — so desperately need.

Q. Tell us how you came to be the executive director of IOCDF.

A. In 2001 I was hired as a staff psychologist at the McLean OCD Institute in Belmont, Massachusetts, a suburb of Boston. In 2008, as the Director of Psychological Services there, I became aware of the transition at the Foundation. Namely, that the organization was moving from New Haven, Connecticut, up to Boston. During my tenure at the Institute, while I was able to help many people with OCD and related disorders, what I was continually frustrated by was the lack of access many individuals with OCD had to effective care. I worked with many people, who, if they had gotten the right treatment years before, would not have had to suffer unnecessarily for so many years. When I was offered the position at the Foundation, I realized it would give me the opportunity to work on a much larger scale to help those affected by OCD and related disorders in a more macro way.

Q. During the 2015 conference wrap-up podcast, you mentioned that your motivation to become a psychologist wasn’t primarily about helping people. However, that’s exactly what you’ve been doing. Did you make a conscious decision to make that shift, or did it happen naturally?

A. When you apply to graduate school you are asked to write a “personal statement.” That is, “Why do you want to be a psychologist?” When I look back at what I wrote then, it was true. I wanted to understand why people did what they did. Why they made the choices they made. This is still the primary driving force in my career. At the Foundation, the question changed to “Why, as a society, can’t people who need access to help get access to that help? How do we, as a group, make decisions in which people who could get better aren’t given that opportunity?” At my core I am a problem solver. I am curious. I like solutions.

I don’t see my role as helping people. I see my role as empowering people, giving people access to resources and tools to help themselves. Maybe it’s semantics, but it is how I think about things.

Q. What do you see as the biggest misconception about OCD?

A. I wrote a blog a few years back entitled “The ‘D’ in OCD.” I think this captures my thinking about this to this day. If you confuse being “obsessive” or “compulsive” with OCD, then it is easy to dismiss or minimize the experience of actually having OCD. The other common misconception concering any disorder, is that our mental health is 100% determined by our willpower. Our brains, our physiology, the power of habit and a lifetime of habits (that may or may not have ever been “chosen”) are incredibly powerful. When we say to someone, “Don’t be so anxious,” or “You don’t need to worry so much,” we are enacting the fallacy that we can “control” our anxiety or worry.

Q. What advice do you have for someone who may not have ready access to the proper care, whether because they live in a rural area in America or in another country?

A. The Internet is the great connector! There are amazing online support groups and a “virtual” community that is willing to be there for people all across the globe. I believe accessing a community can be incredibly healing. There are also more and more internet-based services for people who need more structured support: some therapists treat clients via skype, and there are now numerous smartphone apps to help with self-directed ERP. Here are some of those resources.

Q. Every once in a while someone will email me from another country and say they can’t tell their family or friends about their OCD because their culture doesn’t accept mental illness or has strong stigmas against it. How can someone in that situation get support? And how can we help spread awareness in such countries? 

A. As noted in my answer above I think that people can connect via the Internet if they have access. This issue is also the main motivation in changing our name to the International OCD Foundation. To widen our focus to those all around the world affected by OCD and related disorders. And to bring together those willing to help. It has been an incredibly rewarding experience to build our Global Partnership program. So much more room for growth there, however. In 2015 we appointed our first international spokesperson, Ro Vitale, specifically to help increase awareness and combat stigma in Latin America. We look forward to continuing to expand Ro’s role in that regard, and continuing to partner with other organizations with similar missions around the globe. With more awareness there will be more acceptance.

Q. The IOCDF recently launched a new initiative, asking people to become OCDvocates. Tell us more about that.

A. When I took over the Foundation in 2008 there was so much infrastructure and programming we were focused on building. During those first few years we received an increasing number of people saying they wanted to be part of the mission. But, we didn’t have a place to “plug them in.” Last year, our Director of Marketing and Communications, Carly Bourne, along with our amazing Spokespeople, Jeff Bell, Elizabeth McIngvale, Romina Vitale and Ethan Smith all collaborated to come up with the OCDvocate program. The idea is to have grassroots-based activities and “calls to action” that anyone who would like to participate in can join. An example of this is the holiday card initiative this past year. We asked our OCDvocates to write a personal note in a holiday card so that we could mail them out to patients currently receiving treatment at residential and intensive outpatient treatment programs around the country. Patients were able to receive words of encouragement from those who knew what it was like to be where they were at in that moment and to continue to fight to get their lives back. Anyone can become an OCDvocate by filling out the pledge.

Q. What would you tell someone who feels hopeless, who thinks his or her OCD will never get better?

A. I borrow this from the acceptance and commitment therapy (ACT) community: With or without OCD symptoms, what really matters to you in your life? At the end of it all, what do you want your life to stand for? And OCD symptoms or not, how can you commit to making those values a reality?

Q. Let’s say I’ve never been to the IOCDF’s Annual OCD Conference before. Why should I go?

A. This one is your hardest question! This is like learning to play tennis by reading a book about how to play tennis. The sense of generosity and community at the Annual OCD Conference is powerful and you can only truly understand it if you have attended one. I believe one of the most valuable experiences for those affected by OCD and related disorders is to find a community like this, and the Annual OCD Conference exemplifies that in spades!

Q. One of the most common stories I hear from others with OCD is “It took me umpteen years to be diagnosed because I thought people with OCD just wash their hands a lot.” Another is “I did talk therapy at first and that made my OCD worse.” What can we do as a community to dispel myths about OCD and make sure therapists know how to properly treat OCD?

A. This is a core issue that we focus on every day at the Foundation. Raising awareness about what OCD is and what effective treatment looks like. This is the driving force behind all of our initiatives from the Conference to the Walk to OCD Awareness Week to the OCDvocate program. It is all with the intention of making sure that if you are affected by OCD or a related disorder that you have access to the help you need.

One thing that helps tremendously with this, is people like you being willing to share their stories publicly. Whether through a blog, or book, or simply by talking with family and friends. The more representations we have of what OCD actually looks and feels like, the more people will be able to identify their symptoms and find the right help. Sharing stories also helps to dispel myths and combats stigma by putting a (familiar) face to the disorder. Stigma is so often based out of fear and a lack of understanding. By sharing your story, you are actively helping to eliminate that fear.

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

A. Get connected. Get involved. On any level.

OCD Treatment: One Size Does Not Fit All

I always love writing for the International OCD Foundation blog because it makes me feel connected to the wider OCD community. Last week they posted my latest about following your own path to recovery and not relying on just one piece of advice or person to guide you.

What do you think? Have you found any benefit to getting advice from a range of resources?

Tuesday Q&A: Gail Bernstein

It’s Tuesday already! Welcome back. This week I’m hosting Dr. Gail Bernstein, who specializes in child and adolescent psychiatry at the University of Minnesota in Minneapolis. Parents, this Q&A is for you — especially so if you live in the Twin Cities. Your children are not alone, and there is hope for them! Dr. Bernstein is brilliant and kind and has dedicated her career to helping kids and teens with OCD and anxiety disorders.

Q. Are there certain symptoms among children that are more common than others?

A. The most common obsessions in children and adolescents with OCD are worries about contamination (e.g., germs and dirt) and aggressive thoughts (e.g., fears of harm to self or others). The most common compulsions are checking (e.g., that doors are locked, everything is in the child’s backpack, oven is turned off) and excessive hand washing. Children are more likely than adults to show OCD symptoms of hoarding (i.e., excessive acquisition of objects and difficulty throwing the objects away). Sexual and religious obsessions are fairly common in adolescents with OCD.

Q. I wasn’t diagnosed with OCD until my mid-20s, and I’ve met several other people with the same story, so I’m a little amazed at how many kids are diagnosed long before that. What signs are their parents seeing that help them realize it might be OCD?

A. Children with OCD may seek reassurance from parents repeatedly. They may want parents to participate in rituals such as bedtime rituals. In addition, parents may be asked to do daily laundry due to a child’s concern that his/her clothes or towels are contaminated. Parents may notice that it takes longer for their child to complete homework due to checking and repeating rituals (e.g., rereading, erasing answers multiple times, and rewriting answers). These behaviors can be clues to parents that their child is struggling with OCD.

Q. How can parents help their children through therapy?

A. Most cognitive-behavioral therapists include the parent(s) in a portion of each therapy session so that parents can learn what skills are being taught to their child and what homework (exposure) assignments are being given each week. Parents can serve as coaches for their children in working on exposure assignments at home.

Q. I often tell people that in order to support someone with OCD they need to go against their normal instincts — that is, constantly reassuring the person that their fear won’t be realized actually isn’t helpful, and taking over their rituals for them is just another compulsion. Is this an ongoing struggle in families?

A. Yes. Most parents who have a child with OCD “accommodate” to their child’s OCD symptoms. This means that they change family routines or interactions with their child in a way that allows the child to engage in the OCD rituals and they may participate in rituals with their child. Although this may seem to be supportive to the children, it is counterproductive in that it allows the children with OCD to continue engaging in their impairing OCD symptoms.

Q. People may be surprised to know that even young children can have taboo obsessions, including sexual, violent, and religious obsessions. What might you tell a parent who can’t understand why their child is having such intrusive thoughts?

A. Taboo or forbidden thoughts are not uncommon in pediatric OCD. This may occur in young children and it happens frequently in adolescents with OCD. These thoughts do not represent your child’s true beliefs or values, but are a manifestation of OCD and should be viewed as “the mind playing a trick” on the child or adolescent. Antidepressant medications (such as sertraline) can be helpful in reducing the frequency and intensity of these obsessional thoughts.

Q. What do you think about the warning that antidepressants may increase suicidal thoughts in teenagers? What can you tell us about the safety and efficacy of these medications for children and teens?

A. The risk of new suicidal ideation is 2% in children and adolescents with depression when taking an antidepressant. There is no increased risk in suicidal thoughts for children and adolescents with anxiety or OCD when taking an antidepressant.

Q. You’re currently conducting a study at the University of Minnesota in which children ages 8 to 17 take sertraline, the generic version of Zoloft. You take a brain scan (MRI) at both the beginning of the study, before the child starts the medication, and at the end. What differences between the two scans can you share with us?

A. We have just published our first paper from the pilot data for our study. It shows that teenagers with OCD compared to matched healthy controls have lower connectivity (i.e., impaired connections between nerve cells) in the brain between the putamen (area in the basal ganglia) and parts of the frontal cortex and the insula. In our current study, we will be looking to see if we replicate these results and to see if these connectivity differences normalize after 12 weeks of sertraline.

Q. How can parents get their child involved in this study?

A. We are looking for children and adolescents with OCD (ages 8-17) who are not currently taking antidepressants to participate in the 12-week treatment study with sertraline. Sertraline is FDA-approved for the treatment of pediatric OCD. Children will be compensated for the assessments and MRIs (noninvasive brain scans with no radiation) at the beginning and end of the study. All OCD participants will be seen regularly by Dr. Bernstein over a 12-week period for monitoring of the sertraline trial. Medication management appointments are free because the study is funded by the National Institute of Mental Health. Please call Elizabeth, the project coordinator, at 612-625-1632 to learn more about the study and to participate in a phone screen to find out if your child is eligible to participate. You may also visit our website.

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

A. Early identification and treatment are important to getting relief and remission of OCD symptoms. It will allow your child to get back on the normal developmental path.