Category Archives: Treatment

Nov8

Tuesday Q&A: Producers of UNSTUCK

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ocd_conToday I’m hosting Chris Baier and Kelly Anderson, the producers of the upcoming documentary UNSTUCK: An OCD Kids Movie as well as incredibly supportive parents to children with OCD. The kids interviewed for the film will inspire you: They’re articulate and honest, and their stories will help spread awareness about OCD, particularly how it affects children. Stay tuned for the film’s release next spring!

Chris, you have a 11-year-old daughter who has OCD, and Kelly, you have a 12-year-old daughter who has OCD. How did you realize your child might have OCD? Were there outward symptoms such as physical or time-consuming compulsions, or did your child approach you about obsessive thoughts, for example?

Chris: My wife and I realized something was wrong when in the span of a few weeks Vanessa changed from a happy-go-lucky kid to extremely anxious and scared. She was 8 at the time and became frightened of things like small pebbles and trees on our street. She was convinced these objects were poison, would cause cancer and kill her. She was panicked all the time so we knew she needed help, but we did not know it was OCD until we talked with a licensed therapist.

Kelly: My daughter is 12 and her OCD presented with some pretty visible and classic symptoms so I knew right away what it was. She is not in the film and I’m letting her figure out how much she wants to share about her OCD these days so I guess I’ll leave it at that! She is doing some drawings that will be animated for the film so she’s participating in that way.

OCD is such a commonly misunderstood disorder. What did you know about OCD before your child was diagnosed?

Chris: I knew about OCD and that it was serious, but I mostly associated it with being scared of germs or getting sick. I had no idea of the tangled web it weaves.

Kelly: I have one friend whose brother has severe OCD so I was somewhat aware, but that’s nothing like confronting a severe case of OCD in your own child or family.

Since you live in New York City, I imagine — and hope — that treatment resources abound. Was this the case, or did it take some trial and error before finding the help your child needed?

Chris: In NYC there are plenty of therapists who say they treat OCD, but not many do exposure and response prevention (ERP). My wife and I had to do a lot of research about the disorder and one of the reasons it took weeks to get my daughter the right therapy was because we had to interview many providers just to make sure they were trained in ERP. There were none in Brooklyn so we had to take Vanessa to lower Manhattan each week. About six months into her OCD therapy we found a free group program at Mt. Sinai Hospital. This program, led by Dr. Ariz Rojas, transformed our lives. However, it meant traveling one hour each way by subway to get our daughter to the nighttime sessions.

Kelly: My daughter was already seeing a therapist for some other issues, and that therapist confirmed that we were indeed dealing with OCD. We did ERP with her for a while, but eventually we decided to take advantage of a free group therapy clinic run by Dr. Ariz Rojas at Mt. Sinai Hospital here in NYC. Dr. Rojas specializes in OCD and her approach to ERP is very aggressive (I mean that in a good way!). We started seeing her privately as well as in the group, and it was tremendously effective in dealing with my daughter’s severe OCD. I would strongly recommend that parents of children with OCD seek out specialized ERP therapy if at all possible, even if it means traveling a distance for initial meetings and then continuing online.

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When one member of a family has OCD it can affect the entire family dynamic. What advice do you have for parents whose children have just been diagnosed, or for those who have been struggling to support their children for an extended period of time?

Chris: OCD totally hijacked our family and figured out ways to manipulate and dominate everyone. As a parent, your first thought is to soothe and accommodate, but that’s the worst thing you can do. My advice for parents is to immediately start educating yourself on what OCD is and how it’s treated. Learning about the disorder became our second job. We read books, joined Yahoo groups, watched videos, joined the IOCDF and talked to a lot of people. We needed to understand as much as we could. Eventually, we started a parent group in Brooklyn because we needed to talk to people who understood what we were going through.

Kelly: Learning how to be dispassionate when doing ERP homework with your child is very important. You need to get used to seeing your child in a lot of distress without losing your cool or over-identifying! I also learned that when I react to my child’s OCD with anxiety, it makes her OCD worse. It can be incredibly hard to stay calm and non-reactive, especially if they taking out their anger on you, but if you get upset it just makes everything worse. Finally, trying to be compassionate instead of getting angry at any OCD behavior is key. I found that a very important and difficult lesson to learn, but it’s made a world of difference.

You met at a support group Chris runs for parents of children with OCD. How did you go from that initial meeting to collaborating on UNSTUCK: An OCD Kids Movie?

Chris: Our kids both attended a weeklong OCD summer camp at Mr. Sinai Hospital. One day Kelly was driving her daughter and Vanessa home. The girls were talking about OCD in a very knowledgeable way and that sparked an idea. Kelly approached me about working together and I’m so happy she did. UNSTUCK is something that I think will help many parents and children.

Kelly: I make films as my profession, and last year I had just finished a big project and was thinking about what to do next. I realized I was spending all my time reading about OCD, and it was hard for me to focus on anything else because it was such a big part of my life! The biggest obstacle standing in the way of making a film about OCD was my discomfort with showing kids going through ERP — I knew from experience that no parent would want the world to see their child in such a vulnerable position, and that the kids wouldn’t feel good about it either. I saw another film, Ellen Bruno’s Split, about kids and divorce, and I really liked the way the kids just talked about their experiences in an interview format. I knew Chris through the support group, and had noticed that he was passionate about connecting families and kids with OCD, and we came up with this idea of “kids as experts on OCD.” It’s been great working together on UNSTUCK: An OCD Kids Movie.

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The children who appear in your film inspire me! It took me years after diagnosis in my late 20s to start talking about OCD, and I still get nervous. Were there any obstacles to finding children who were willing to open up, and parents who were okay with that, too?

Kelly: We are really indebted to several of our advisors who are mental health professionals — in particular Dr. Ariz Rojas at Mt. Sinai Hospital and Dr. Eric Storch at Rogers Hospital. They were willing to approach some families about participating in the film. We found other children through the OCD and Parenting Yahoo group. I am really very thankful to Vanessa and Jake, the first two children we filmed for the trailer. I think they inspired other kids to participate because they were brave and articulate, and potential participants could see how important it is for kids to hear from other kids who know what they are going through.

I think it speaks to a greater level of acceptance of difference in general, and of mental illness and disability in particular, that kids are willing to tell their stories. These kids really want to help others with OCD — it’s amazing to hear them talk about why they want to be in UNSTUCK.

You have an advisory board of professionals — adults — in the field. How much input have you gotten from children with OCD, and what’s been the most surprising, helpful, or enlightening piece of insight they’ve shared?

Chris: We talked with probably 15-20 children and families before picking our cast. Every child we spoke with help us frame our approach. These kids and others in the OCD community really helped inform the discussions we had during filming.

As for what surprised us, collectively two themes stand out. The first is the loneliness each child experienced when OCD was really bad. The second is the bravery each of them showed while learning to fight back. Some children have had to do some drastic things to get control of their lives. We’re in awe of their strength.

UNSTUCK seems like a real labor of love. How does it feel working on a project that’s so personal, and how have you managed to fit it into your schedule?

Chris: Schedule-wise, we set mini deadlines and I think that helped us stay on track even though we never had an official release date. First we wanted to get the trailer finished by winter 2016 so we could start fundraising and spread the word about the film. Then we planned a screening at OCD Con in July, which meant we had to film more children in order to have something to show at the conference. Now we’re focused on finishing by spring 2017 so that we can share it with the world.

Kelly: It’s definitely a labor of love! We also were really fortunate to get some funding from the Kellen Foundation for it, so that has been really helpful. It’s always a challenge to get films made but we are really excited it will be coming out this spring!

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What can my readers do to help make UNSTUCK a reality? 

Chris: It would be great if people joined our mailing list on our site and/or like our Facebook page. This way they get first look at new content and get notified immediately when UNSTUCK is finished.

Kelly: Well, we are still looking for donations. Every dollar will go toward getting the film finished and out into the world. We really want to do a big engagement campaign with it, showing it in festivals, conferences, community organizations, schools, and more.

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

Chris: I would say parents and caregivers should understand that they can’t magically fix a child. Kids have to learn the tools themselves. I found that the best thing was to become an advocate and cheerleader for my daughter. So, just find ways to help and support your child so they can focus on therapy.

Kelly: Don’t blame your kid for their OCD even though it makes life miserable for everybody. They are dealing with a tremendously stressful mental illness and they need your love and support. And forgive yourself for the times you act in ways you regret — we are all only human! Do whatever you can to get your child to a cognitive behavioral therapist that specialist in ERP for OCD (the International OCD Foundation website can help you find someone qualified). That really saved our lives.

Oct18

Tuesday Q&A: Mark Joyella

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mental-illness-awareness-181If you know me, you know I believe we all have the power to spread awareness, even if it’s to one other person in our lives, and that every little bit matters. A journalist with nearly 12,000 followers on Twitter, Mark Joyella is in a position to spread awareness far and wide, and we’re lucky enough that he’s willing to! I first heard of him when he wrote a great piece called “Screw stigma: I’m coming out” about his personal experience with OCD, and I’ve since learned he stands up against the stigma and misconceptions surrounding mental illness in general.

As a journalist, you’re in the public eye. And, right or not, people have certain expectations of public figures, so you took what some would consider a risk when you wrote “Screw stigma: I’m coming out.” Why did you decide to disclose that you have OCD? How was the piece received?

I had grown increasingly concerned about the content of news stories and how mental illness was being handled — it felt to me that instead of illuminating the topic, some of the reporting merely reinforced stereotypes. I felt that failing to disclose my own illness —  and refusing to speak out because I didn’t want my illness public — had become an unbearable situation. The reaction was exceptionally positive, and I immediately connected with other journalists who had revealed their mental illness — and others who weren’t ready to do so.

You note in that piece that you were never shy about telling co-workers about your physical symptoms and ailments, and refer to being recognized during a colonoscopy as “a decent anecdote.” But you weren’t willing to talk about your mental illness in the same way. Tell us why.

I think most people look at physical illness as something that happens to you, while mental illness, unfairly, is seen as who a person is — that’s why people with mental illness often feel judged or blamed. There’s also a kind of bond in sharing stories of physical illness — even the awkwardness or unpleasantness of the illness or the treatment — that makes sharing stories an easy thing to do. But with mental illness, there’s no guarantee how you will be received, and no way to know if anyone will identify with what you are experiencing, even though the statistics tell us it’s highly likely in any given workplace there are several people who are in some way touched directly by mental illness.

When were you diagnosed with OCD, and how did you realize what you’d been going through might be OCD?

OCD was first mentioned to me by a therapist as we were working on my struggle to break out of personal isolation — there were tons of fears that kept me inside my home and not living. But because I was able to get to work and even travel extensively on stories, I wasn’t aware of how isolated and afraid I really was.

After you were diagnosed, how did you feel? How did you go about treating your OCD symptoms?

On the one hand, it’s nice to know there’s an explanation for what you’re experiencing, and I liked that. But OCD? Because I don’t have outward compulsions, it was hard to accept at first. But a psychiatrist agreed with the diagnosis, and off I went. I began studying up on the disorder, began taking medicine to treat it, and I began to get better.

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People often ask me how I told my loved ones that I’d been diagnosed with OCD, so I’ll pose the same question to you: Who did you tell, and how?

I didn’t tell anybody at first. The only person outside my doctors who knew was my girlfriend — now my wife — who had struggled with the walls I had put up to protect myself. She had suspected OCD, but I must admit it sounded like a wild idea until the “experts” said, yep, that’s it. The rest of my friends and family learned of my diagnosis when I wrote my story. Probably not the best way to bring it up — but it worked, and I’m sure I would’ve lost endless amounts of sleep trying to prepare for a conversation about it — this way the band-aid came right off and I didn’t have to begin the conversation at all. “I read your story,” people would say, and we would talk about it. For me, that was the easiest way: I threw it out there all at once.

What advice do you have for my readers who want to advocate for OCD awareness but don’t know where to begin? And what if they’re worried how people will perceive them?

I’ve been massively impressed with the ways people advocate for OCD awareness — with small steps and giant efforts. There’s a way to do it for every person. I’ve used social media to call out news stories that I felt were poorly done, and to try and boost the signal for people who have good stories to tell. But sometimes the smallest actions — like seeing a person on Twitter who says they are suffering with the illness, and responding “you’re not alone” can have an impact. Imagine hearing that from a person in a country far away when you really, really needed to hear it.

I admire how open you are on social media, and how willing you are to call people out when they’re being ignorant. I laughed out loud at this one. I’ve been insulted and even sworn at for doing similar things. Have you ever really gotten into it with anyone?

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I’ve had fellow reporters get very defensive when I criticized the words they used in stories (one example: a reference to a person with mental illness “escaping” from a “mental institution.” I wrote: “do you mean a “patient” fleeing a “hospital”? The reporter blamed the law enforcement agency for using the terms, and said he was merely repeating what the “official” information was. I said, you know, you don’t have to repeat stigma-reinforcing language. And people get really offended when you call out OCD jokes. They never meant any harm and they can’t believe you are attacking them for turning OCD into a punchline. But man, I hate those jokes so, so much.

On a broader level, you’ve worked on several pieces addressing how the media reports on mental health in America — for example, it seems that whenever there’s a mass shooting reporters feel comfortable diagnosing the shooter with some mental illness or another. What can reporters do differently — and better?

Reporters can get educated. There are tons of resources — around the world — for journalists to learn more about what mental illness is, how common it is, and how not to fall into the traps of writing stories that are filled with inaccurate assumptions.

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

It’s OK to not be OK. Recovery is not a straight line, and I find that great weeks when I push my boundaries and challenge my fears, are often followed by weeks when I need to step back and while it’s tempting to see that as a failure or setback, I think it’s like resting a sore muscle after pushing it hard during training. You don’t just get stronger and stronger. You push, you rest, you get stronger, you push again.

Oct4

Tuesday Q&A: Kirsten Pagacz

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13166850_1788791191354710_783429034_nKirsten 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.

13151020_994575027245951_891578085_nYou 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.

kirstenanddougYou’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!”

Sep20

Tuesday Q&A: Stuart Ralph

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a30rzkotI’ve recently gotten into podcasts (did you know they’ve been a thing for, like, years now?), so I was happy to come across the aptly titled The OCD Stories, a well-done, inspirational podcast and website run by the fellow I’m hosting today: Stuart Ralph. I haven’t had the pleasure of meeting Stu in person, but I feel like I know him, at least a little, through his project. Thanks for being here, Stu, and for your thoughtful answers!

You’re behind the incredibly uplifting “The OCD Stories: Real stories that educate and inspire those with OCD.” You interview individuals with OCD as well as therapists on your podcast, and you also publish personal essays. How did this all come about?

Firstly, thank you. Praise is always appreciated. It came about from my own desire to read uplifting stories. As part of my recovery I started blogging on stuartralph.com/blog with the aim of sharing what was and wasn’t working for me. I found myself during spikes, as a lot of us do searching the internet for stories that relate to my own, so I could be reassured that my symptoms were OCD and not real desires, i.e., to leave my partner, or having sexually assaulted someone etc. I realized that these stories were scattered all over the internet, and I wanted to create a website where stories about OCD could live in one place. I wanted our stories to not be a source of reassurance as we all know this won’t help in the long term, but a source of inspiration and education. A place where people could talk about their struggles but also what is helping them. Recovery-focused stories. The OCD Stories was launched. A few months later I decided I needed to do more, so I created The OCD Stories podcast. I wanted to interview the greatest minds in mental health to offer the listeners good advice and also look into what the future holds for OCD treatment.

It took me years and years to figure out I had OCD, and I finally got help when it seemed that my obsessions had spilled into everything and made being around even my own family difficult. How did you realize you might have OCD, and why did you seek help? Did you have any sort of rock bottom experience, or certain obsessions that seemed particularly stubborn?

Like yourself it took me years also, 10 to be precise. I always felt like I was living a kind of super hero life. Not because I had any cool super powers but because I had to spend so much of my childhood hiding my weird behaviors and disturbing thoughts. I felt that if I spoke up and told my family I would be locked away for being a “nutter.” Stigma was paralyzing me and prolonging my pain even at that early age and I wasn’t aware of it. Harm OCD was my main problem growing up. Constantly have to do checking compulsions, mental checking, repetitive actions, and symmetry compulsions to stop my family being killed, innocent children in Africa being harmed or me being lost in another dimension alone. It was all very painful and frustrating, especially as I didn’t know what was happening. It got critical when BDD came into my life. I was obsessed that I was a freak because of my appearance, and that no one would ever love me. This went on for a couple years in my early teens, to the point of contemplating suicide. Most of my day was based around hiding my ears, including growing my hair and using hair products to stop it moving as to not reveal my ears. My mind at school was focused on playing small and not showing people the freak I was. In hindsight I love who I am inside and out, but at the time my mind made me believe the most horrible things. I eventually had enough and wanted to find an answer. I searched Google for answers typing in my symptoms to get multiple web pages describing the mental health condition OCD. The more I read the more I could relate. It was if they were writing about my own life. This was such a relief. I was 16/17 at this point. I finally got up the courage to call my doctor and make an appointment. I went through the NHS, and saw a psychologist. But didn’t do proper treatment until I was 27. The NHS is great, at the time mental health resources I believe were limited. As my compulsions at the time weren’t dominating every waking second I was asked to give it some time and read some OCD self-help books. If they didn’t work, I was recommended to come back and they would put me through CBT. I think my positive attitude didn’t help because I downplayed my symptoms to the psychiatrist, wanting to look like I had some control over my life. I continued to struggle for another 10 years, OCD ebbing and flowing in strength. At 27 I decided enough was enough and went privately to treat my OCD. I saw one peer support coach (Mark Freeman) and two therapists, all having positive impacts on my OCD and overall happiness.

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

I felt normal for the first time in my life. Understanding what it was allowed me to see OCD as the problem not me, this allowed me to speak to my parents about it. Sharing for the first time with them what had been going on in my mind. My mum went shopping with me to buy some books on CBT and OCD, it was awkward for me, but nice to not be alone any more. As for treatment I will offer advice from when I was 27 because this is when I faced my bully. I did ERP to get rid of my physical compulsions. But in my twenties my mental compulsions were stronger and more entangled than any outward compulsions, so ERP helped but I thought acceptance and commitment therapy (ACT) helped me more with the obsessions. Learning to distance myself from the thoughts and accept the anxiety and doubts, really allowed them to slowly dissipate. Adjusting my diet and exercise also helped in my recovery.

Part of your stated mission is “to be a beacon of light in the moments of darkness we have all had to endure, as a result of OCD.” The stories you’ve shared has certainly achieved that. How has helping others affected your life and your own recovery?

Anne Frank said “No one has ever become poor by giving.” Creating this website and podcast has allowed me to connect with so many great people, and help those who need it. The OCD Stories has given me a community which is important for recovery and a purpose.

Have any of the stories especially resonated with you? 

I love every story I’ve had on the website. Each one has something that I can relate to, or that touches me profoundly. One person shared that a therapist had told her she was a hopeless case. That shook me. In this day and age, such statements should not be made. We must never remove hope from the equation. On a more positive note, most of the stories end on a very selfless note offering hope to the reader — this always moves me. It is a testament to the great people OCD sufferers are.

What advice can you share with people with OCD who may not be comfortable sharing their stories yet? 

We publish stories anonymously sometimes. It’s OK if you’re not ready to use your name, I get that it is scary and can be a risk. Sharing your story I have found to be such a cathartic experience. Putting it down on paper (or word) can help you make sense of it all, and by focusing on helping the reader it can inspire you. If you wanted to share your story, I’d be happy to publish it anonymously. Or just write it for yourself as part of the healing process.

You’ve been chipping away at the stigma around OCD. If you could erase one misconception with the swipe of your finger, what would it be?

I would swipe away the ignorance around mixing OCD with OCPD.

And since this isn’t a perfect world, what can we do to erase that misconception with the tools we actually have, bit by bit?

I come from a media and marketing background. Marketing is all about perception. Same for OCD, or anything really. We can change the perception of OCD by writing, recording, and sharing accurate and positive information about OCD. So we effectively drown out all the hyped-up nonsense and misconceptions around OCD. We as sufferers, and/or therapists, can achieve this by writing blog posts, doing podcasts, filming videos, sharing our stories, or writing articles on OCD. We can even correct people when they misunderstand what OCD is in front of us. But if we do this we must remember to remain humble, and kind in our correction of their innocently naive blunder.

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

Learn to love the question mark. When we learn to live with the doubt and uncertainty and slowly become OK with not knowing, we drain OCD of all the power it has over us. It’s not easy, but it’s possible.

Sep13

Tuesday Q&A: Stephen Smith

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steveheadshotOne 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.

stevefootball

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

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AaronHeadShotOn 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

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SeanArtIt’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.

Apr26

Tuesday Q&A: Tim Blue

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TimandWifeTim 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.

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

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.

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

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.

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

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.

BlueFamily

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?

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.

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?

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.

As you might know, my blog is primarily about OCD because OCD is my primary diagnosis — so let me ask 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?

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.

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

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.

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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?

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.

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

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!

Apr12

Tuesday Q&A: Michael Jenike

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IMG_2367[1]In 2014 I attended my first OCD Conference, and I kept hearing snippets of conversation about this man, Dr. Michael Jenike. It was “Jenike this” and “Jenike that.” I finally asked my hotel roommate who Jenike was. “You haven’t met Jenike?!”

In 2013 Dr. Jenike had granted me permission to use his very helpful checklist for finding an effective therapist in my book, so when I met him at the 2015 conference, I thanked him. After all I had heard about him, I thought he’d have an intimidating, scholarly presence. Nope. Not so much. He said, “Where’s my cut of the royalties?”

Dr. Jenike is brilliant, yes, and he’s helped countless people gain control over OCD. But he’s really goofy, too. Going to this year’s conference in Chicago? See for yourself.

You’re kind of a big deal in the OCD community. You founded the Obsessive-Compulsive Disorder Institute (OCDI) at McLean Hospital, a world-renowned residential treatment program. How did that all come about?

After treating thousands of patients for a number of years, we realized that some patients did not improve despite medications and behavior therapy. I thought that perhaps a residential OCD facility where patients could stay for long periods of time might make a difference. We planned to do the same treatments, just for a longer period of time and more intensely. McLean OCD Institute has now been open around 20 years and the demand for services has not let up.

When you decided to go into psychiatry, did you know you’d end up treating OCD? If not, when and how did you decide to focus on this particular disorder?

I had no idea about OCD. In medical school I had a classmate who would miss many classes because he was in the bathroom washing his hands. I had no idea why he was doing that. I was going to be a surgeon and planned on going to Johns Hopkins for surgery. In medical school I had an inspiring teacher, Dr. Ronald Krug, who thought I would like to take a psychiatry elective with a local psychiatrist. This was an amazing experience and I could see that if you were aggressively working to help people with real expectations that many got better or improved markedly. Prior to that elective, I mostly saw psychiatrists as talkers and not result oriented in medical school. I was always a results oriented sort of person, thus my interest in surgery. However, there were some awesome psychiatry lectures in medical school and I thought it would be great to learn psychiatry, but I had no intention of becoming a psychiatrist. I asked the doctor in charge of the elective and Dr. Krug where the best place to learn psychiatry was, and they said Massachusetts General Hospital (MGH). I applied and was accepted for training and finished up there and stayed on the faculty ever since.

While in residency at MGH I saw a few OCD patients and was fascinated with these patients who would do crazy and seemingly purposeless rituals for hours despite being totally sane. They were really nice people but they were suffering as much as anyone I had ever seen. I was always interested in lessening people’s suffering so this intrigued me. Also, the total lack of knowledge in my supervisors about OCD was astounding. No one thought they could be helped. OCD became my hobby. During these early years of my career, I ran the MGH inpatient psychiatric department and founded and ran the MGH dementia clinic for about 15 years. I mostly published in geriatrics and dementia with occasional OCD papers. We thought OCD was very rare. Out of the blue, the Larry King TV show called me and wanted me to go on the show with an OCD patient. Their request was for me to discuss where you could shoot yourself to improve mental illness. There had been a report of a young man with depression and OCD who shot himself in the front of his head and he recovered and his OCD and depression were gone. After that, we got over a hundred calls a day for a long while. The OCD disorder that we felt was very rare was obviously not uncommon. Soon after a large study came out showing a prevalence of OCD of over 1 percent of the population. With the onslaught of OCD patients I gradually shifted to mostly doing OCD clinical work and research. Over the next few decades we branched into all kinds of clinical trials, genetic studies, neuroimaging studies, and innovative treatments. The staff grew to over a hundred people, and we now have a huge clinic at MGH headed by Dr. Sabine Wilhelm that specializes in OCD and also related disorders like body dysmorphic disorder, trichotillomania, Tourette syndrome, et cetera.

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You contributed to Life in Rewind: The Story of a Young Courageous Man Who Persevered Over OCD and the Harvard Doctor Who Broke All the Rules to Help Him. That’s a long subtitle — did you really break all the rules, and did doing so change the course of OCD treatment for generations to come?

I don’t really worry about the rules if they get in the way of patient care. I was told when I was in training that psychiatrists are not allowed to make house calls but my patients were stuck and could not get out of the house so I saw no other way. I don’t break rules just to break them (I hope). It seemed silly to have a nonsense rule that prevented very ill patients from getting help. We have systematically set up a group of master’s-level clinicians to go into people’s homes to treat severely ill patients. I do think this is a model for the country but funding is a problem. I have gotten around this by very generous donations from a few people that allow me to pay these clinicians well to do this work. I still spend much of my time out of the office seeing people on their turf. I find this fun and exciting, and the results can be fantastic. Ed Zine, the person in the book you mention, is doing great. He has two teenage daughters and a wonderful wife. He has gone back to school to become a therapist and wants to help OCD patients. He will talk to patients on the phone to help motivate them. Could anything be more rewarding?

Jeff Szymanski said he credits you with setting the tone of the annual OCD Conferences because you were always willing to answer questions after your sessions — once for 12 hours. I’ll quote him here from the wrap-up podcast he did after last year’s conference: “If you see Dr. Jenike, shake his hand. He really set that norm of, ‘You’re here, you’re working, you’re going to be generous.'” Did these early experiences surprise you, or did they confirm what you already knew, that people desperately needed help and resources for OCD?

That was always my style. I gave the keynote talk at the Boston annual conference and after there were many questions. I told the audience I would stay till all their questions were answered. After a while they moved us to another room, and I was there over 12 hours, and it was a totally amazing experience. Each question is worth taking seriously as sometimes you answer a question or send a patient to a good clinician and that few minutes changes their or their children’s lives forever. Each year at the annual conference people come up to me and report how well they are doing. Life is short; if I can make such a difference it makes what I do totally worthwhile. This is such rewarding work.

Through my advocacy work I’ve met lots of other people with OCD, and so many of them either refuse to take medication in the first place or decide to go off it because they see it as a crutch. Say you have a patient you think could benefit from medication, but she is either afraid or thinks taking medication is a sign of weakness. What would you tell her?

This is always a hard problem. Sometimes medication helps a lot and people decide to stop it even though they are not having much in terms of side effects. If people get well after long periods of illness, there are demands on them. Work. Family. Dating. Et cetera. It is sometimes easier just to go back to the old and “comfortable” illness. Some people almost see OCD as an old friend. I explain that using meds for OCD is really no different from a diabetic using pills or insulin to control their sugar. The person has an illness and the medication can help them lead a more normal life.

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

Usually outpatient treatment like behavior therapy and medications are tried before the OCDI. Most patients at the OCDI have not done well with these treatments.

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I have what some people call pure O; I mostly struggle with obsessions and don’t perform physical compulsions such as hand-washing. How would my OCD be treated at OCDI? 

Patients with so-called pure O all have compulsions but the compulsions are mental. If you look at it like that, the treatments are similar. They can read Lee Baer’s book The Imp of the Mind for detailed instructions on how to manage the thoughts. Everyone has intrusive thoughts but they pass through the brain quickly if you don’t have OCD. If you have OCD, the thoughts can get stuck and a person will ruminate about the thought; what it means, are they a bad person, et cetera. The pure O patient has to learn to just let the thoughts be there and not analyze or ritualize about the thought. Similar to a person who washes away contaminants; they just contaminate themselves and then not wash.

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

Don’t let your OCD go untreated. Thousands of people just accept OCD and don’t take advantage of treatments that may do a world of good. OCD sucks the enjoyment out of life and life is meant to be enjoyed. It is short (I realize this more now that I am older) and there is no cosmic requirement for lifelong suffering.