Monthly Archives: March 2015

Tuesday Q&A: Jenn Coward

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image4Tuesday, Tuesday, Tuesday! It’s become one of my favorite days of the week. And this week’s guest is one of my favorite OCD awareness advocates, Jenn Coward. If I haven’t convinced you already how wonderful the annual OCD Conference is, maybe this interview will finally seal the deal. It’s a great way to make friends, learn about treatment, and feel comforted knowing you’re not alone and don’t have to explain what OCD is or clear up any misconceptions.

Jeff Bell introduced me to Jenn on the first night of the conference, and we hit it off immediately.

When we met you told me the funniest story about one of your compulsions, avoiding stepping on sidewalk cracks, which you were still struggling with at the OCD Conference in 2012. When you ran into someone at the 2014 conference, she said, in front of several other people, “I’m so glad you got over your crack problem!” Of course, the “crack problem” wasn’t a laughing matter when you were struggling with it. How did you manage to stop avoiding sidewalk cracks?

It is definitely a story I won’t forget. I was attending the 2012 International OCD Foundation Conference in Chicago and a couple of new friends I met asked me about some of my compulsions. I had rarely discussed openly avoiding sidewalk cracks because over the years I managed to become really good at avoiding sidewalk cracks and making it look like I wasn’t trying to avoid them. Since we were honestly discussing our compulsions, I decided I should talk about it. As good as I had become at making it look like I wasn’t avoiding the cracks, I would avoid places if the sidewalks or tiles inside malls had a lot of cracks. I was missing out on things because of my fear and compulsion.

The conference and friends I had made really inspired me to work hard in ERP and challenge my fears. I met so many people who had made such progress and were successfully overcoming their compulsions, I wanted to as well. When I got home from the conference I read a few books including Jeff Bell’s When in Doubt, Make Belief and Shannon Shy’s It’ll Be OK: How I Kept Obsessive Compulsive Disorder (OCD) From Ruining My Life. These books had some great strategies I wanted to try. I started slowly with every day trying to step on at least one crack. It was really difficult because I immediately wanted to go back and fix it by retracing my steps and not stepping on the crack. The first few times, the anxiety and bad thoughts were unbearable and I felt like giving up. After the first few weeks, though, the anxiety started to not be so strong. It took almost three months before I could move on and step on two cracks a day, but I was making progress that I could see and it gave me confidence to keep going. Eight months later, I was consistently stepping on cracks and the anxiety and bad thoughts were hardly there. I knew I was winning this war on OCD and it made me so happy.

Can you tell us why you wouldn’t step on cracks?

I’m not really sure how this compulsion started but I was walking to work one day when my OCD symptoms were starting to get worse and really take over my life. I remember stepping on a crack in the sidewalk and all of a sudden an image popped into my head of my mom being in a horrible car accident. It scared me so much that I just stopped walking and stood there for a minute trying to figure out why I was thinking of this. The anxiety started to build up and for some reason this thought about needing to avoid sidewalk cracks came to mind. Over the course of the next few days, I noticed if I stepped on any cracks, I would get these mental images of someone in my family being harmed and my mind kept telling me it was my fault, I was causing this to happen. The only thing that helped decrease the anxiety and keep these thoughts from overpowering me was this constant voice in my head telling me to avoid the sidewalk cracks. If I avoided the cracks, my family would be okay. Before long I was avoiding every crack, and if I accidentally stepped on a crack, I had to go back to the very beginning, meaning wherever I was walking from, I had to go back and walk the “correct” way—not on any cracks—so my family would be okay. A few times I tried to ignore the anxiety and bad thoughts, but they became so frightening it was just easier to give in to the compulsion so I could have relief from the anxiety.

You went on Dr. Jonathan Grayson’s Virtual Camping Trip. Why did you go so out of your comfort zone?

A lot of people I met at the 2012 conference suggested it to me. I wasn’t going to go because it sounded really uncomfortable, but many of my new friends I had just met were doing it so I figured I would go and see what it was about. It was the most terrifying and exhilarating ERP experience I had ever had at that time. Here we were walking around in this big group around downtown Chicago at night, and whatever Dr. Grayson told us to do, we did. At the time it made no sense to me that I would do these things–kick car tires, yell at cars to “crash and burn,” or play in a dumpster–but here I was doing it. After the fact I think I realized I did it because we were in such a big group so it felt more comfortable and Dr. Grayson didn’t give us time to stop and think through what he was telling us to do. This virtual camping trip made me realize that ERP was really going to be what helped me get over my compulsions.

How did you realize you had OCD? For me it wasn’t at all obvious and it took several years before I was diagnosed.

For a number of years I didn’t know I had OCD either. I now realize I first had the onset of symptoms in my pre-teen years. It wasn’t until I was almost fourteen, though, that I really started to experience a lot of OCD thoughts that I developed compulsions to deal with. I kept it all to myself because I was scared and confused. I didn’t understand why I was having these thoughts and why I needed to perform these compulsions. I was scared to tell anyone because I couldn’t understand myself what was going on. I really tried to perform my rituals in secret so my family wouldn’t see what I was doing. I would be up really late at night performing these compulsions and I couldn’t go to bed until I had done them perfectly. Over time I was getting really stressed by the growing list of compulsions I had to perform. I finally confided in a friend at school one day when it was all becoming too much. I started to explain to her my thoughts and compulsions. I was so surprised to hear her tell me she thought she knew what I may have and told me to go home and look up obsessive-compulsive disorder. At the time I didn’t know she had been living with OCD for a number of years. I went home that night and looked it up in this big medical journal we had, and there were three pages on OCD. I remember sitting there reading it and I started to cry from relief. The obsessions and compulsions it was describing were what I was experiencing. I realized it was time to talk to my parents and look into going to see my doctor.

JennandShannon

Jenn with Shannon Shy

Can you share some of your other obsessions and compulsions? What steps did you take to get some control over them?

When I had a relapse four and a half years ago, my obsessions and compulsions were different from when I was first diagnosed as a teenager. Everything had a place and it always had to be in that place. If anyone moved something, even a tiny bit, I would know and I had to fix it. Since I had a fear of harming people, I was scared to drive and never got my license because of this.

One of the most difficult obsessions that I had besides sidewalk cracks was a fear of certain numbers: Six, twelve, any multiple of those numbers (24, 36, etc.), or any combination of numbers that added to six or twelve. I was paralyzed by this fear of numbers. Everything I did, I had to make sure it didn’t happen at one of these times or dates. For example, if I needed to wash my hands but it was 1:06 p.m., I would wait until 1:07 p.m.

ERP was how I eventually got control over these compulsions. I started small with doing things like intentionally moving something like a magazine so it wasn’t in its right place and I would try and go as long as possible before I had to fix it. At first it was only a minute, but over months of constantly working on this compulsion, I could go hours without having to move it back to its right place and eventually I could have multiple things out of place at one time and my anxiety was still decreasing. This is how I got control over all my compulsions.

Some fears and compulsions took a long time to get control over like my number phobia, but I approached them all the same way. I can honestly say my number phobia took almost two years for me to get control over.

I know you’ve made huge leaps in recovery in the past few years, and you didn’t waste any time before getting into advocacy in your community. Tell us about your awareness-spreading efforts and how you got into them.

I’m currently a guest speaker for a high school mental health awareness program that is called Talking About Mental Illness (TAMI). It’s a three-day program for grade 11 students. A mental health nurse comes in and educates students about different types of mental illnesses, the symptoms, and where they can go locally to get help. I share my personal experience with OCD. I also speak at our local college to many different programs, specifically the ones that have a mental health element (nursing, child and youth worker, personal support worker.) I’ve also done a lot of local media for OCD Awareness Week and Bell Let’s Talk Day, a mental health awareness day in Canada.

I got into awareness spreading because I wanted to make a difference and turn what I had been through into something positive and meaningful. When I had learned about Jeff Bell’s Adversity 2 Advocacy Alliance and what they did, it made sense to me. So many of the people I met who were better became advocates and shared their own personal story. It seemed to be so therapeutic for them and they were helping others by sharing their story. After my relapse, I remember being in a very dark place, feeling hopeless. I was sure I would never get better. Then I read a book that changed my life. It was Jeff Bell’s memoir, Rewind, Replay, Repeat. I remember sitting there when I finished reading it and thinking there was hope. His book provided me that hope when I needed it most. I realized if his book could do this for me, sharing my experience could help someone else.

image1You’ve been planning a rather large event called Stand Up to Stigma on April 24. Tell us more about that.

Stand Up To Stigma is a fund-raiser and mental health awareness night. I felt like our community needed an event where we could come together and have an honest, open conversation about mental health. I wanted to address the stigma that still surrounds mental illness but more importantly have people within our community share their story of living with mental illness so others could see they weren’t alone, there was hope, they could get better. Specifically youth mental youth is a big topic for our event. The statistics are frightening. Three out of four children and youth with a mental health problem in Canada will not receive treatment. Three times as many youth (15 to 24 years old) die by suicide than by all forms of cancer combined. We are failing our youth and the only way we can address it is by starting the conversation. All money raised will be going to a Canadian mental health charity called Partners for Mental Health.

We met at the OCD Conference in 2014, but it wasn’t your first time there, and it certainly won’t be the last. What keeps you coming back year after year?

It is the most fun I have all year. There is nothing quite like being with hundreds of other people who understand you. I have made great friends and every year there are workshops where I learn so much more about living with OCD. I know I would not have recovered as well from my relapse if it wasn’t for these conferences. They have provided me with so many tools and friendships to get better.

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

Don’t give up, there’s hope. When it seems that getting better is impossible, believe that it is possible, because it is.

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Tuesday Q&A: Jeff Bell

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Happy Tuesday! For this installment of Tuesday Q&A we’re hearing from Jeff Bell, an amazing advocate, the author of Rewind, Replay, Repeat and When in Doubt, Make Belief, a board member and spokesperson for the International OCD Foundation, and an award-winning radio news broadcaster. Oh, and husband, father, and friend to many. He’ll tell you all about his tough love message–and it’s true, when it comes to OCD he does practice tough love—but he has the biggest, warmest heart. The emphasis is really on the love part of that equation.

Jeff is serious about spreading awareness about OCD, but he has a great sense of humor, so I started off our interview with a silly question: “We met at the OCD Conference last summer. Be honest. How intimidated were you by my star power?”

He laughed, of course. I mean come on, he is the true star.

JeffBellOkay, but now I have a real question. You were participating at the OCD Conference. You’re an IOCDF board member and spokesperson. How did you get involved with the organization?

I was really fortunate to have had the opportunity to keynote with Liz McIngvale in Houston in 2007, and after having done that I was offered an opportunity to get involved with the IOCDF. As soon as I sat down with this amazing group of people, the board of directors, I knew in an instant this was a project I wanted to be a part of. I was very fortunate to join the board and become a spokesperson, and it’s been incredibly rewarding ever since.

Like so many of us with OCD, it took you years of struggle and pain before you were diagnosed. Even though you’d been seeing a therapist, you diagnosed yourself with OCD while she was on vacation.

That is correct. I like to say that I finally let my inner investigator and reporter take charge, because I am a journalist by trade. I realized after a couple of misdiagnoses that there was something missing, and I wanted to go about getting answers in the same way I would go about getting answers to a story I was investigating. So I started doing some research. I went to a bookstore. As the story goes, I was so fixated on what would happen if somebody saw me in the psychology section of a bookstore that I was prepared to come up with an elaborate ruse as to why I was actually there. I was really fortunate that I stumbled across a book called The Boy Who Couldn’t Stop Washing by Dr. Judith Rappaport, and fortunately for me, the very first story in that book is a man driving down a highway who becomes convinced that he’s run people over and turns his car around to go check to make sure that that’s not the case. My first reaction, honest to god, was I don’t remember writing a book! It was that uncanny. I didn’t realize that other people did these same things that I was doing. And I cannot imagine that as long as I live there will ever be a more powerful moment in my life, because in that moment, reading that book and reading the first few pages, I realized three things: One, I’m not the only person who does these seemingly crazy things, the compulsions. Two, the author has a name for the disorder. She calls it OCD, obsessive-compulsive disorder. And three, there’s a treatment. I did not know any of those three things before stumbling across that book.

Your OCD manifested itself after you were married. Your wife, of course, wanted you to stop driving in circles, checking and rechecking to see whether you’d accidentally run someone over. What advice do you have for those who have family members with OCD? What is the best way to support them, without enabling them?

Man, that really is a tricky question, Alison, because it’s our human nature that we want to provide comfort to people. That makes things so challenging for a spouse or a parent or a loved one or a friend of someone dealing with OCD, who with the best of intentions wants to provide comfort when in fact we know that that can be very counterproductive in the OCD treatment world. My therapist was shrewd enough to bring Samantha, my wife, into the equation and help her understand when she was helping me and when she was actually unwittingly hurting me in terms of enabling my compulsions and getting in the way of my recovery. I think that was such an important component of my own treatment process. I’m really encouraged to hear more and more from clients and professionals that this is becoming a part of the process, bringing in loved ones., helping them understand the do’s and don’ts of OCD treatment support.

After seeing several doctors who either misdiagnosed you or recommended the wrong kind of therapy for OCD, you found one who knew exactly what to do. She understood OCD and knew ERP was the right treatment. But you didn’t do the homework she assigned you. While you did waste some of her time, you really cheated yourself. What advice do you have for someone who’s struggling through ERP, for someone who wants to give up and give in to OCD?

Yeah, that is the crux of all of this and the crux of my own outreach. I have a very tough love message, Alison. There are no shortcuts. I can say that as somebody who spent years looking for them. Alas, I did not find them. I paid lip service to my therapy for far too long. I sat through my therapy sessions, I nodded my head when my therapist asked if I was doing the homework she’d assigned me, and yet for all intents and purposes I was spending a lot of money to go in and lie. In retrospect I question, well, why was I doing that? I think I was giving myself some credit for actually trying to do something proactive and yet I wasn’t willing to do the hard work that it took to get better. And I became bitter after a while. Why couldn’t this therapist fix me? Why couldn’t anybody fix me? And it was only when I started shifting my thinking and realizing that I had a huge role in this process, the most important role as far as I’m concerned. I needed to bring to the table the passion for getting better, the motivation for getting better, the willpower and the strength to do the treatment process. So, why wasn’t I doing it? Because this therapy is really, really hard, and what was lacking for me was something right in front of me that would remind me of what was at stake and what the motivation I needed was.

My message over the years has been pretty much a tough love message that we’re very fortunate in the OCD community to have a treatment process that works. ERP works. We know that, scientifically. But it’s only as effective as our ability to apply it in a meaningful way. And for me, what was missing was motivation. And so most of my outreach over the years has been helping people stay motivated through the treatment process. I talk about what I call greater good motivation, and this is a motivation technique that I learned. When I am able to shift my decision making in a constructive way that allows me to call out greater good goals, I’m able to willfully choose to sit with the anxiety–because that’s ultimately what we’re trying to do, sit with anxiety. And with the right motivation, we can willfully choose to sit with anxiety.

You’ve stated that you found your peace with medication. What were your hesitations about taking medication, and what changed your mind?

I struggled, like so many people with OCD struggle with medication, in that I was afraid it was going to change me or take away that much more of my sense of control. OCD is so much about control. I was afraid. I couldn’t trust my judgment as is; was I going to be worse if I was on medication? Could I ever trust my judgment? I was making all kinds of excuses for not going on medication. An OCD sufferer’s world tends to be very black and white, and so for me there were two different kinds of people in the world: Somebody who didn’t need medication, and somebody who did. There was a part of me that thought if I were strong enough I wouldn’t need this medication. And I almost saw it as a sign of weakness. That was all part of the challenge I was facing with medication. I also remember having a conversation with my wife, when I said, “What if this changes who I am?” and she answered me in a very compassionate way. She said, “Is this who you want to be?” and she didn’t mean it to be a nasty comment; she was asking me to evaluate honestly if I was happy with who I was dealing with OCD the way I had been at that juncture. It was a really pointed question because I had to think, “No, I’m not happy with who I am.” And I very reluctantly agreed to try medication, and it made a huge difference for me. I realized it was not at all a sign of weakness, it was a sign of strength, it was a sign of courage, to be able to try something that was such a challenge for me to try. Once I did, I realized, oh my goodness, this stuff really makes a huge difference for me, mostly because it toned down, if you will, the intensity of the OCD to an extent that I was able to do the hard work of exposure therapy. Part of my message is that I believe we need to learn the tools afforded by exposure and response prevention therapy, that I don’t think there’s a real shortcut around that, and in my own experience I have found proper medication has allowed me to get a leg up on the ERP work and be that much more effective at it. It’s been an incredibly helpful tool for me.

JeffandMargaret

Jeff with Margaret Sisson, fellow OCD advocate

You’re so involved in the OCD community. Do you have any advice for young people who may want to advocate on a grassroots level?

I do indeed. I believe that we help ourselves by helping others. That’s sort of been my mantra through my OCD advocacy, and mental health advocacy in general. And I would like to encourage everyone to be able to learn that in fact is the case, and the way to learn that is to find ways to be of service in their community. I have learned that there is a special magic in being of service to people who are challenged by OCD, by challenges that we ourselves have been through. When there are opportunities for somebody with OCD to help other people with OCD, I would strongly encourage those people to take those opportunities, and we have those in our community. We can get involved with the IOCDF and be a part of the IOCDF community, we can offer to write stories and share our stories through the IOCDF newsletter.

I have a project that I’m involved with, and that I’m very excited about, called Project Hope Exchange. This is an opportunity for anybody, in 30 seconds’ time, to leave a message of encouragement for somebody else challenged by their own challenge, and so for an OCD sufferer, they could get involved with Project Hope Exchange and leave a 30-second message of hope for somebody else with OCD. They can do it anonymously or on a first-name basis only, but, at every turn, the concept is we help ourselves by helping others.

There’s something very powerful for people with OCD when they’re afforded an opportunity to help other people with OCD, and so by all means I would encourage people to take those opportunities, and that does not necessarily mean going public. That’s a question that I get a lot and I’m sure that you get a lot as well, Alison. We’ve shared our stories openly: Should everybody? And the answer is no. It’s a very individual question to be considered deeply by anybody considering sharing their story. I would encourage people to give that a lot of thought. There is something wonderful about speaking openly about our OCD, but it can be sharing with a few friends, or it can even be sharing an OCD story anonymously. It can just be quietly serving other people with OCD by getting involved and volunteering for an organization like the IOCDF.

You and I have both written books about our personal experiences with OCD, as you just mentioned. Sometimes I still worry that I’ve said too much and I’ll regret this choice someday. Did you have moments during the book publishing process when you worried that you were making a mistake by revealing so many personal details about your life? 

Oh, absolutely. That was a really scary juncture for me. Prior to the publication of my first book, I could probably count on one hand the people in my world who knew about my challenges with OCD. And then suddenly the entire world, or anyone who wanted to spend $13.95 or whatever, could read the book, and that was really sobering. I sometimes liken the whole process to this: I imagined when I published the book that I was going to open this door to a very scary place and turn on the lights to this new world of advocacy and be met by a bunch of monsters on the other side who were going to gobble me up, and instead I opened the door and turned on the lights and there were all these amazing people with their arms wide open saying, “Welcome.” And those were the other advocates out there. Those were the other people who forged a path for people like you and me, who had bravely shared their own stories. And not only in the OCD community, but in so many different adversities. I immediately became part of their community and learned through them. There’s a phenomenal community of folks out there who are doing first-person advocacy because of what they’ve been through, or what we refer to as adversity-driven advocacy. It’s been such a privilege to be part of that community.

A2A-LogoSpeaking of, tell us more about the A2A Alliance.

Yes, thank you for asking! A big theme of my books has been this notion that I was able to help myself by helping others and that I identified what I call greater good goals that were bigger than my OCD, bigger than me, that allowed me to find a strength that I didn’t know I had. When I published the first book, and started publicly speaking about my OCD, I found that the more I was able to share my story, the more I was able to do something meaningful with what I’d been through, the stronger I was getting. And that led to my second book, which was more of an exploration of that whole process, of the greater good motivation, and this notion that we help ourselves by helping others. I started networking with all these amazing people, those very same people I referenced that are part of the advocacy community. I call them adversity-driven advocates, people who are doing what they’re doing because of what they’ve been through themselves. Cancer survivors reaching out to other cancer survivors, folks who have dealt with a form of mental illness reaching out and supporting others who have dealt with that form of mental illness, and right on down the line.

I became fascinated by this common thread that I had friends who were dealing with cancer or other physical ailments that were slightly different from my own challenge, that presented completely different challenges from my own with OCD, and yet we shared this common link that we were both finding great motivation by supporting other people in our respective adversity communities. I wanted to do something that would help facilitate the ability for people to tap into this notion that we help ourselves by helping others, and it sort of grew out of another challenge that I had, which was people coming to me and saying, “You know, I love what you’re doing in terms of advocacy, but I don’t wanna write a book, I’m not sure what to do. What can I do?” and I never had great answers for those people. That’s when I started playing with the notion of creating something that people could be a part of that would afford them opportunities to be advocates, even in a small-scale way. Part of that vision was to network a number of people across a variety of different adversities who could kind of lead the way.

Over the past three years, we have networked over 50 leading adversity-driven advocates across dozens of different adversities who are out there setting examples for people to follow of what it’s like to do this adversity-driven advocacy. Part of our commitment is providing pathways to advocacy for people who want to step into advocacy. We also work with leading researchers who are providing empirical support to this notion that we help ourselves by helping others, researchers at Harvard and UC Berkeley, for example, who are doing phenomenal research around altruism, around a sense of purpose, around compassion and empathy, and so forth.

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

It sounds like a cliché, but I think this encapsulates everything I try to put out there: Choose to believe beyond your doubt.

Tuesday Q&A: Jackie Lea Sommers

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Jackie Lea Sommers headshot7

Have I mentioned how lucky I am to know so many wonderful people in the OCD community? It wasn’t that long ago that I’d never even met one other person with OCD—let alone someone who had an experience so similar to mine.

Fate stepped in when the International OCD Foundation asked both me and Jackie Lea Sommers to blog about our personal experiences with OCD. In Jackie’s first post she mentioned that she grew up in a small town in Minnesota—hey, me too! So I wrote a comment after her post telling her how great it was and that I’d love to connect sometime.

We met for coffee–even though Jackie doesn’t actually drink coffee–and the rest is history. Here was someone who really understood OCD, right in my own backyard. We’d both struggled with HOCD and scrupulosity, too. When the IOCDF asked us if we’d run their Minneapolis affiliate, OCD Twin Cities, we said yes with the caveat that we’re busy women—with an anxiety disorder! Of course, the IOCDF knows a thing or two about that, so we talked it all through and got the ball rolling. Jackie’s the communications specialist, a great fit for her. You’ll understand why when you read our Q&A below—she has a way with words and a passion for connecting others to the proper treatment.

Jackie, Jackie, Jackie. You’re my trusted OCD Twin Cities partner, you have a popular blog with a substantial section on OCD, and you often speak at University of Northwestern about your personal experience with the disorder. But long before you became an advocate, you suffered in silence. How many years did you struggle with obsessions and compulsions before you were diagnosed and got help?

In hindsight, I can see that my OCD kicked in at age seven. I was finally diagnosed 15 years later. But even after my diagnosis, it still took another five years before I finally underwent the exposure and response prevention (ERP) therapy that gave me back my freedom!

You left no stone unturned as you worked to get relief. You tried several medications before you found the right combination for you, and you finally went through 12 weeks of ERP. How did you keep the faith and keep on pushing through the disappointments and doubts?

Five years of failed medication and talk therapy is really disheartening. I had one therapist who made me feel worthless and ashamed; after I quit seeing her, I avoided therapy for a year or so. The same thing happened with meds. I’ve had just about every side effect in the book—vision loss, weight gain, tremors, dry mouth, excessive sweating, blocking (a form of stuttering), lactation (yes, really), and a near-fatal allergic reaction—but it was the extreme lethargy I experienced on one prescription that finally made me avoid all medication for a year. When I went back (and tried a couple more failed meds), my psychiatrist finally referred me to an OCD expert. He got me on the right medication and into ERP therapy almost immediately. It was worth it all.

I know you were scared to go through ERP, and you’ve described the process as hell on earth. Now you’re one of its strongest advocates. Tell us why.

I like to say that ERP is the second hardest thing I’ve ever had to do—but the absolute hardest was living daily life with OCD. When you look at it that way, it makes sense. I chose to do something hard for twelve weeks so that I wouldn’t have to live with the hardest for the rest of my life.

ERP is the frontline treatment for OCD; it shouldn’t have taken five years after my diagnosis for someone to recommend it to me. That’s why I tell the OCD sufferers who read my blog to run toward ERP. Twenty years of OCD bondage was broken for me in just twelve weeks of ERP therapy.

You’re on medication, too, which can carry such a stigma. I know people within the OCD community who consider it a badge of honor to get through it all without ever going on medication, or eventually weaning themselves off it. Have you ever questioned whether you should take medication for your OCD? What keeps you taking it day in and day out?

I’ve never been ashamed of my medication. There’s no reason for me to be. I have something off chemically in my body, so I’m fixing it chemically so that I have all the same advantages as everyone else. I know that the stigma exists, but it’s hard for me to understand why. Do those same people think that diabetics shouldn’t get insulin shots?

I fought for my freedom from OCD. I went through years of side effects to find the right medication. I’m proud of my persistence to get the help I needed. These things feel a little narcissistic to say, but I say them anyway because I want other people to be able to say them too!

If someone asked me to describe you in just a few words, I may have to go with “devout Christian.” Your faith plays such a tremendous role in not only your recovery from OCD but in your life as a whole. But that doesn’t mean you think prayer alone is the answer to OCD or any mental illness. Was there a time when you thought prayer alone might save you, and how did you realize you needed professional help? 

Oh yes, definitely. I spent the majority of my high school and college life praying for deliverance from OCD (though I didn’t know it was OCD at the time). When I finally started to get help, it was with a Christian therapist and a Christian psychiatrist—then another Christian therapist, then another Christian psychiatrist. But what I needed was someone skilled in treating ERP—whether they were a Christian or not. When you have scrupulosity and other religious obsessions, you can get tied up in trying to “solve” your obsessions (i.e. compulsions)—instead of treating OCD. It’s a very clever distraction OCD uses to keep itself in power. But OCD is a medical problem; it needs to be treated. If I was about to have heart surgery, would I want to find a kind Christian doctor—or an expert heart surgeon? Hands-down, I’d choose the expert. And that’s what I needed to do with treating my OCD too—find someone who understood OCD, not someone who understood my faith.

UNW

Jackie draws a crowd at University of Northwestern

One of the types of OCD you’ve really struggled with is scrupulosity, and in that case prayer can actually be a compulsion! How does someone with faith reconcile this and recognize the difference between obsessive behaviors and a healthy devotion?

My ERP therapist asked me early on, “Can you tell the difference between when you’re praying obsessively/ritualistically and when you’re engaged in honest worship or prayer?” I said yes and meant it. One happened as a compulsion, with a racing heart, intense anxiety, and a feeling that I was just trying to distract myself. The other was a conversation with someone I love intensely. The gap between the two is great, and that gulf has only widened in my mind the more I’ve been set free from OCD!

Your blog serves as both an inspiration and practical resource for your many readers with OCD. Why did you decide to start a blog and devote much of it to OCD? And, come on—how hard was it at first to put some of your obsessions out there for others to read? 

To be honest, I started the blog to help build a platform for myself as a writer, and at the time I was writing about OCD (as I am again!), so it felt natural to reach out to such an audience as it might be the same people who’d be interested in the story I was writing. But over the years, it’s become more of a labor of love. The more I have interacted with the OCD community, the more I love it and hurt for it. I so greatly desire for there to be a landing page when a frustrated parent Googles “my child thinks bad thoughts” or when a person in an identity crisis searches “I am straight but think I’m gay.” I want that landing page to be my website—and for it to immediately point them to the solution of ERP therapy.

As far as being scared to put my obsessions “out there,” it definitely has depended on the obsession. I spent so many years in shame; it’s hard to shed that like a coat! But, bit by bit, I’ve peeled it back—or rather, the acceptance I’ve gotten from people, the kind reactions, the “me too”s have done so. When I feel fear about putting an obsession online, I think of the people out there who think they are the only ones, and I want them to know they’re not alone, so that sort of drives me to write about experiences that maybe I’d rather not make public. I know how hard it is to speak first, but since I’ve found such freedom and confidence, I’m willing to do it, so that other people can say, “Me too.” I think of it as a gift.

After years of responding to pretty much everyone who ever reached out to you for help, you made the difficult decision to shut down the email portion of your blog. Why did you move forward with this decision, even though you initially felt guilty about it?

I am so honored by every email I receive from brave OCD sufferers willing to share their story, but after about 2,500 emails in the course of a couple years, it was beginning to be more than I could handle. I’m not a professional, not equipped to handle so much pain being handed to me over and over and over. Eventually I had to take my email address off my website and write a generic but heartfelt letter to all OCD sufferers with my best advice to them: find a skilled ERP therapist or do ERP on your own with a book to guide you. For so long, I wanted to be everyone’s cheerleader, to cheer them on to health—but it wasn’t healthy for me! It was a hard decision to step back, but I needed to be a writer and blogger and OCD survivor, and let that be enough.

Your young adult novel, Truest, will be released by Harper-Collins September 1 this year. But before Truest you wrote a novel about OCD, which you share on your blog. How did you decide to write a book about such a personal experience, even as fiction? Did you find it therapeutic?

It was very therapeutic. In fact, it helped me to understand what had really happened during ERP therapy! Though that book will never see the light of day, I’m writing another young adult novel now about a character with OCD. It’s interesting to be writing fiction about OCD again. I don’t always like it. But I love the characters and am excited that it might shed some light on OCD for teens.

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

ERP, ERP, ERP!

Tuesday Q&A: Melanie Lefebvre

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If you’ve been keeping up with my blog posts you probably know how much I admire Dr. Lee Baer, author of The Imp of the Mind: Exploring the Silent Epidemic of Obsessive Bad Thoughts, and how I owe so much of my recovery to this book. Well, at the OCD Conference in Los Angeles in July 2014, I went to his session on intrusive taboo thoughts. Beforehand he said, “I’m glad you’re here—I plan to ask for volunteers to share their obsessions and compulsions in front of the group, but if no one wants to I hope you’ll role play with me.”

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Showing off her OCD Conference badge

Knowing how scary it is to utter obsessions and compulsions, I honestly thought Dr. Baer would have to call on me to sit at the front of the room with him. Instead, several audience members volunteered, eager to learn from his expertise. Melanie Lefebvre, our guest this week, ended up sharing her struggle with hit-and-run OCD with Dr. Baer and, of course, the whole group.

Melanie was so terrified she might hit someone while driving, and possibly kill the person without even realizing it, that she’d stopped driving altogether—even though her job occasionally required her to travel throughout the day. She’d resorted to taking the bus and having her husband give her rides. She thought she’d never drive again.

Enter Dr. Baer.

You were so brave to volunteer! Tell us why you did.

I almost didn’t! I joined the people who were gathered around Dr. Baer during the break to soak up as much knowledge as I could. I had connected with Dr. Baer prior to the workshop to verify whether it would be a good fit for me. When he saw me at break, he asked if I’d like to volunteer and I shyly declined. Dr. Baer surveyed the group to see who had done treatment—everyone had. I shared that I had dabbled in it and suddenly I had a cheer squad rooting for me to volunteer. How could I resist a cheer squad?

You mentioned you dabbled in therapy before the conference. How was that working for you?

I would do the reading; I’d make the hierarchies; I’d do the cognitive work. But the thought of driving around my neighborhood for 20 minutes as an exposure was terrifying. I kept chickening out once it got to the gold standard of what works.

It was pretty cool to watch Dr. Baer talk you through your fears and help you come up with a plan to confront them. It was like inspirational OCD improv. How did you feel as he gave you advice?

Hearing you describe it as inspirational OCD improv is a confidence booster! I was worried I was boring everyone—that someone else should have volunteered. Good ole OCD doing its thing. Despite that, I was incredibly grateful that I was getting personalized advice. It was a surreal experience that left me floating on air.

Did you feel empowered to implement his advice right away, or did you still have your doubts about whether you’d be driving by the end of the summer?

I definitely had doubts but I had committed to Dr. Baer, to a room full of people. My OCD trumped any feelings of empowerment but accountability was something I could embrace. Accountability was the motivator that gave me the push I needed. Thank you, Dr. Baer and the room full of people!

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On the red carpet at the OCD Conference

You’re doing well now, and you’re driving again. I think that’s such a powerful testament to how well ERP works. Were there moments or days when you struggled through the ERP, and if so, how did you work through it?

It was hard listening to the Stephen King–inspired loop tape over and over. [Editor’s note: Dr. Baer challenged Melanie to think of her worst “Stephen King scenario” related to her hit-and-run obsession and record herself describing it.] But I’d been given a prescription and I was going to keep taking the course of antibiotics. Eventually, I became bored with the script and knew it was time to get behind the wheel. I got through it by remembering what a psychologist from Texas told me after the workshop: “Just drive an inch.” Anytime the fear of getting behind the wheel surfaced, I reminded myself all I needed to do was drive an inch. But once you drive an inch, the inches keep building. It also helped to have my husband as the passenger until eventually I felt brave enough to drive solo. I’d poke fun of the OCD and sing “All I do is kill kill kill no matter what!” to the tune of “All I Do Is Win.” Or my husband and I would see pedestrians and say, “Another opportunity for a kill!” It sounds awful but OCD is what’s awful. Taking it to an absurd level helps take its power away. On the days where those strategies didn’t work, I’d get home and sit with the anxiety until it went away—repeating over and over that I had killed someone—an impromptu loop tape. It’s still hard. I still avoid driving at times. But I haven’t stopped driving altogether like I had before the conference.

Not only are you doing better, you’ve also started sharing your story on the OCD and Families blog. Has writing about your experience with OCD helped you get through it?

Writing about my OCD allows me take something nasty and mold it into something else. Being featured on the OCD and Families blog has been empowering (finally empowerment is trumping OCD!) and helped me embrace my inner advocate.

Tell us more about your OCD awareness videos on YouTube. Where did you get the idea to model it after a cooking show? It’s so clever!

The OCD Awareness Video Contest through the IOCDF threw me for a loop initially. I wasn’t a videographer. I’m a writer! Where was the writing contest?! But I knew that if I was going to make a video, I wanted it to be creative, to intrigue the audience. So my husband and I got to brainstorming. The plan wasn’t for me to be the chef. We were going to focus on the mixing bowl and feature text explaining the ingredients of OCD. I wanted to explain less commonly known types of OCD—give them a deserved place in social media. And by disclosing about having OCD, I hoped to combat stigma—not only from the public but to also challenge the self-stigma that was still lurking within me. This naturally progressed to the idea of a cooking show—why not be the chef? When else do you get to wear a chef’s hat?

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

Learn as much about it as you can! Once you have context, you can better navigate what’s happening. I keep an OCD file on my phone where I store tips, quotes—anything that I can quickly access and remind myself of when I feel like I’m going under. One of my favorites is from Jon Hershfield, “If OCD thoughts are loud, the options are to accept their loudness or try to turn them up and blow out the speakers.”

But I can’t stop at one! Tip two: connect with others who have OCD at your own pace, whether it’s an anonymous online group or a support group in your hometown. Peer support is special and dear to my heart.

I loved the conference and being surrounded by people who understood OCD—so much so that I felt pretty let down once I was back in the real world! Tell us about your experience at the conference last summer. Was it the first time you’d attended? Other than meeting with Dr. Baer, what was your most memorable experience? 

I can relate to the sharp contrast of the real world to the world of the International OCD Foundation’s annual conference. Attending the conference for the first time was the biggest accomplishment of my life. It was a huge ERP on multiple levels. My second most memorable experience is Ethan Smith’s speech which was heartwarming and hilarious all wrapped together. But I’ve got to add another: meeting my friend from an online support group. Meeting in person solidified our friendship. We were partners in crime as we experienced our first conference side by side.

Do you plan to attend this year?

I am grateful to have won the OCD Awareness Video contest through the IOCDF that comes with a prize of a trip to the conference. The win gives me a push to keep challenging myself. I still have travel-related OCD but the conference is calling!

Tuesday Q&A: Romina Vitale

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Welcome to this week’s edition of Tuesday Q&A! Today I’m hosting my first international guest, Argentinian singer-songwriter and OCD awareness advocate Romina Vitale. Like so many wonderful people I know in the OCD community, I met Ro at the OCD Conference in LA. (If you’ve never been to a conference, I highly recommend it! This July it will be in Boston, and I hope to see you there.)

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You were the keynote speaker in the Spanish program at the 2014 OCD Conference in LA. Tell us more about that. What inspired you to get involved in the conference and present this big speech?

Not so long ago, OCD ruled my everyday life so intensely that I used to spend most of my day sitting on the edge of my bathtub. I used to call it “my office” since I couldn’t sit anywhere else in the house. I remember that my main connection with the outside world was my iPad and an unanswered question: Was there anybody else out there living in the same nightmarish maze? I needed to know that I was not alone. I was desperately seeking for other people living with this debilitating disorder. That’s when I found the IOCDF’s website and wrote them an email. I sent them my article for Entremujeres magazine and they said they really liked it. Stephanie was my first contact at the IOCDF. I wish she knew how important was for me to exchange those first emails with her. I desperately wanted to attend the 2013 Conference, but I was stuck on the edge of a faraway bathtub. The foundation, the conference, and Stephanie became a symbolic representation of hope. I was given the opportunity to turn my adversity into advocacy, it was my chance to give new meaning to my pain by helping others…

And I needed to see the faces of other OCD sufferers. See if their eyes were as brilliant and terrified as mine. However, as much as I wanted to go to Atlanta, I couldn’t travel on my own and the conference dates were around the corner. But we stayed in touch and determined to meet next year in Los Angeles. The IOCDF became one of the most important affective landmarks for me as an OCD sufferer. That is why being the keynote speaker for the Spanish program was not only an honor but also an empowering and healing experience for me.

What do you hope your audience took away from your presentation?

I strongly believe in nurturing and revealing the uniqueness of the individual that resides underneath the OCD “coat.” That’s why one of my main goals as an advocate is not only to raise awareness about stigma, seeking help, and accessing the right treatment, but also to encourage sufferers to trust their creative identity. I think that there is great therapeutic value in addressing each person’s true dreams and goals in life and helping them find the will and determination to achieve them. During my speech I performed a live exposure because I wanted the audience to have a taste of how effective ERP can be, but I guess most of my presentation centered around the importance of dis-identifying form the symptoms and addressing each one’s uniqueness. Probably that is why I started the keynote singing a capella.

So I hope the audience took away a sense of hope and a stronger trust in themselves.

You were also in a panel I attended called OCD in the Media. You and other panelists discussed common misconceptions about OCD that are perpetuated on TV and in movies. One thing you said really struck me: Before you agree to interviews you make sure you’ll have a chance to talk about OCD. When did you come to this decision, and how?

When I first went public, I didn’t know that my article would make such an impact. After more than 40,000 hits and an overwhelming email/message bombardment from sufferers and relatives, I realized there was no way back. The OCD tag would “decorate” my public clothes from then on. So I decided to embrace my new reality and combine my artistic life with my role as an advocate for OCD awareness. There was nothing to feel ashamed of, and I was willing to take the risk. I can’t describe how empowering and freeing it was to not dissociate the different aspects of what was important for me. My art, my struggle, my advocacy journey, myself…

Have you ever gotten a negative reaction to this requirement?

Sometimes journalists or media people would try to overshadow one aspect over the other, and it might be reasonable given the nature of each show. A music radio show would probably want me to talk about music. Sometimes OCD looks like a “boring” or unpopular topic, or inversely, they would want to address the bizarreness of the symptoms instead of talking about my songs. I usually say what I need to say. And even though I might politely stick to their preferred topic, I feel so comfortable with this integrative approach of things that I just bring any subject up when I feel it’s right to do it.

RoSingingI loved the song you wrote for the conference, “My Inspiration.” Do you ever slip in references to OCD or your struggles in your Spanish pop songs?

Oh, I’m glad that you liked the song!

Surprisingly, I don’t typically write songs about OCD. I wrote two songs inspired by my group-mates at the OCD Center of Los Angeles, one of which is actually “My Inspiration.” I think I once tried to write some OCD themed song in Spanish but never finished it. I’m sure, however, that OCD has slipped into some of my songs, at least tacitly or indirectly.

What obsessions and compulsions have you had over the years? Was there one obsession or compulsion that was harder than others to deal with?

I have had contamination intrusive thoughts as well as superstitious intrusive thoughts, and scrupulosity intrusive thoughts. Cleaning compulsions include hand-washing, compulsive laundry, great difficulty with cooking, storing food, avoiding the out-doors or touching people, among a long list of other compulsions. Superstitious rituals would involve walking back and forth, locking/ unlocking doors, spiting “bad food,” re-washing items, etc.

One contamination intrusive thought literally expelled me from my own house. And yes, it is still resistant to ERP, at least in the sense that I still have trouble with visiting my tenant-friends in that house. It is sad, because I love that place, but it was also where I spent most of my worst OCD times, which obviously affected my relationship with that place.

When were you diagnosed with OCD? How are you doing now?

I was diagnosed with severe OCD around five years ago. After an intensive CBT/ ERP treatment at the OCD Center of Los Angeles, I am doing much better now. I haven’t had any relapse ever since. Of course I still struggle with my symptoms, but I am aware that recovery takes time. I now have a half-functional life, that might not be as full and happy as a non-OCD person’s life, but now my field of action is far more wide ranging than during “the bathtub era.”

If you’ve had relapses, either big or small, can you share how you’ve dealt with them? Do you have any methods for preventing relapse?

I had big relapses. My last relapse was really bad. It was in between two trips to Los Angeles. I remember that my parents would come pick me up, drag me out of my place and take me to the restaurants. Otherwise I would not eat. I was diagnosed with malnutrition and would wear wet clothes most of the times. My OCD had gotten so bad that I remember experiencing intense confusion and having trouble with the most basic tasks, such as drinking, eating or dressing. Fortunately, my family and I made a life-altering decision: I would travel to LA for an intensive CBT/ERP treatment. I haven’t had any relapse after that intensive, so far.

My only method for preventing relapses is accessing the strong emotional foundation I have built through treatment. I have developed habituation, but not only in the sense of “learning healthier habits as a replacement for compulsions.” I also habituated myself to anticipating the OCD cycle in a way that I can fall and even “hurt” myself, but then I know how to get up, shake the dust off my knees and keep walking. I engage myself in a lot of natural exposures as well. That means, I push myself to do exposures almost every time that an OCD fear interferes with a random task. In fact, I seem to do better with natural exposures than with some old obsessions that I usually can hardly tame, even through therapeutic ERP. That doesn’t mean that natural exposures should replace therapeutic ones. In fact, it is extremely important to keep doing traditional therapeutic ERP as maintenance.

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You’re working on a documentary that details your struggle and journey with the disorder. Do you have any inside information you can spill here for my readers? (I can’t wait to see it!)

I can’t wait to see it either! So this is the news: I’ve teamed up with a pretty successful and well-known video-clips director in Argentina and we are doing a whole new documentary! We’re hoping to have it done by July and premiere it at the conference.

You recently got involved with the A2A Alliance. Can you tell us how that came about, and what you’re doing with the organization?

It all started when I met Jeff Bell at the IOCDF’s 2014 Conference in Los Angeles. I remember I was about to join the OCD in the Media panel, which was my first participation at the conference. I was so nervous and excited, and didn’t know how things would work out. Jeff came up to me and we had the most pleasant and encouraging first conversation. One thing led to the other and all of a sudden we found out we had the same way of thinking about OCD awareness, even though we were born and raised thousands of miles apart. I felt such a bond and connection with this new friend, this new ally, that I guess it’s not by chance that he runs such an inspiring and wonderful organization: A2A is a great concept put into action. It gathers people that were able to turn adversity into advocacy. Yes, that magical and empowering transition that often helps find meaning to our struggles by being of service to someone that’s battling the same adversity. I’m honored to have been given the opportunity to become an A2A advocate.

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

I would suggest seeking help in the first place. Of course I mean specialized help (CBT/ERP therapy). Secondly, it is important that people suffering from OCD understand that they are not their disorder. OCD is not a personality trait, not even a personality disorder. We need to dis-identify from our symptoms and focus on our CBT/ERP treatment. I would also encourage OCD sufferers to talk about their disorder. There is nothing to be ashamed of or feel embarrassed about. As I said, our symptoms do not define our identity. One way of breaking stigma is letting people know about our OCD instead of trying to hide its manifestations. In sum, OCD can be treated, sufferers can actually get better and enjoy more functional lives. There is no need to hide; in fact, the more we talk about our OCD the less OCD will speak for us.