Tag Archives: OCD Conference

Tuesday Q&A: Epifania Gallina

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dsc_0082-copyHappy New Year! I’ve been on a bit of a break from posting Tuesday Q&As, and I’m happy to host Epifania Gallina in this first post of 2017! Learn more about her experience with OCD, stigma, and her secret Facebook support group.

When were you diagnosed with OCD, and how did you realize you might have it? 

I was diagnosed with OCD in 2012 at the Columbia Psychiatric Institute as I participated in a research study for three days. At that point I had been severely suffering for two years and I knew I had OCD because my symptoms matched the criteria perfectly, but I was too afraid to find help because I was embarrassed. I come from an Italian culture that does not acknowledge the need for mental health, hence I thought I could just “get over it” on my own. I was also too afraid to go to a therapist because as we all know, OCD tells us not to find help because “the therapist will say it’s not the OCD, it’s us.” Don’t let OCD lie to you. That’s a big lie.

You run an OCD support page on Facebook called “Living on edge: Taking back your life through ERP.” For my readers who may not know what ERP is, can you explain? And what can members expect from the group if they join?

Yes! I spend most of my days peer coaching others with OCD and I would not change that for the world. I started Living on Edge a year and four months ago with the purpose of giving people a safe platform in which evidence-based (scientifically proven) information was posted and which limited compulsive behavior. This means that people can ask any questions, but I make sure that the answers given are not reassurance based (a compulsion), or a continuous thread of comments that are compulsive. This is not to point the finger at any other group because many support groups helped me when I needed a guidance; however, the majority of groups present too many compulsive posts and sufferers are distressed because they are receiving more and more reassurance (which works for a split second) and do not get additional support. My goal was to allow people to ask any questions they had but with a sole purpose: not giving each other reassurance or compulse together.

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The main component of the group is that of coaching one another with cognitive behavioral therapy techniques as well as other tools that might help. I always make sure I read the comments and guide everyone toward the more therapeutic side of things. I am also always available to answer people’s private messages whenever they send them to me. Exposure and response prevention (ERP) is considered the best treatment for OCD with at least 70 to 90 percent effectiveness in treating people. It consists in gradual exposure to the person’s obsessions with the focus of eliminating the compulsions surrounding the obsessional theme. Indeed, as scientists have discovered, it is not the obsession that we need to eliminate, because OCD themes constantly change, but the compulsion. Once the compulsion is eliminated, the obsession does not bother the person as much and at times it disappears. However, most importantly in ERP is teaching the person to accept uncertainty, which is a quality that is necessary to live a healthy life. Since OCD is a doubting disease, it consists in wanting the person to have 100 percent certainty in everything, whether it is contamination, relationships, etc. If the person does not understand something thoroughly then the OCD mind turns on it. In reality, there is no such thing as 100 percent certainty; hence, as we don’t really know what will happen to us in life, we cannot know if something is right or wrong, or if something will or will not cause us harm, but we can still live by our values.

In addition, we have billions of thoughts every day. ERP teaches us that we don’t have to escape the negative thoughts or figure them out. We have to learn how to accept them and choose those that are relevant to us because it is okay to let go of others. In a few words, thoughts are not facts, but we just have to let them be. This is truly hard for someone with OCD, but I promise, it is so worth it. ERP helped bring my OCD from moderate to very mild in two years of therapy. It is important to remember that many people still need to take meds in addition to having ERP based on the degree of severity. This is okay also. Never be ashamed of your path.

While you run the Facebook group and have support and understanding from your family, you don’t discuss OCD on your personal Facebook page. Why is that? 

Unfortunately, I am still not open about OCD with the world, and although discrimination in the workplace is not permitted, there are many stigmatizing factors that I have to consider, hence I cannot share with everyone. I hope that will change one day.

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You attended the International OCD Foundation conference last summer. Had you been to the conference before? What did you like best about your experience there?

Yes! I love the conference because every time I am around other OCD sufferers I feel like I can be myself. They are truly the kindest and most genuine people to be around. I consider them my second family. Everyone is so supportive of one another and there are tons of fun and informative things to do every year. In 2015, I attended as a volunteer and after that I started Living on Edge, so in 2016 I really wanted to speak and tell my story and that is what happened! My favorite moments of this year were the virtual camping (live exposures) and all of the peer support groups, as well as the main dinner and dance, of course!

What do you consider the biggest misunderstanding people have about OCD?

The biggest misunderstanding people have of OCD is that it is a perfectionistic disease or that it is not that big of a deal. OCD is a debilitating disorder, but it can also be conquered if treated on time and effectively.

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

You are not alone. There is help out there and you can defeat this disorder. Please, please, don’t forget that you are stronger than this. The International OCD Foundation has great information on finding help and support groups like mine that will guide you toward finding help. You can always contact me at epi91@hotmail.it. My support group is secret, so I can explain how to join it. Best to all!

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.

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. 

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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. 

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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.  

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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.

Tuesday Q&A: Carol Rettner

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Carol and Jeff on the dance floor

This week I’m hosting Carol Rettner, a kind, hilarious, and brave woman I met at the OCD Conference in L.A. in 2014. When I met Jeff Bell and mentioned I was from Minneapolis, he asked if I’d met Carol — I hadn’t — and later introduced us. He also told me that until recently Carol hadn’t left Minnesota for nearly three decades, but there she was at a conference in California, rooming with a woman she’d met at another conference. And this past summer Carol and I roomed together in Boston, where I learned just how delightful she is.

Carol credits Jeff with helping her recover from OCD and make great strides, and their friendship is a testament to how incredibly important a strong support system is. That said, Carol had to do the hard work herself, and I think you’ll agree that her strength is inspiring. It is possible to get better, even one small step at a time. (But for the record, Jeff is awesome.)

Let’s hear from Carol.

How did you first hear about the conference? Why did you decide to go?

My OCD therapist had mentioned it and then a friend said she was going and asked me to go along. I decided to go to that conference because it was in my home state and if my anxiety got too high I could be home in 20 minutes. It was also less expensive since I was able to volunteer and didn’t have the extra expense of a plane ticket. OCD had taken a toll on my finances.

I had friends who were attending and so with a lot of encouragement and a little bit of pushing from my therapist, I decided to risk it. My OCD was getting progressively worse and soon my contamination fears took over my life. Public transportation became almost impossible and if I did have to use it, the decontamination process I had to go through after could last for days. So I didn’t leave Minnesota for 27 years except for my four-month stay at Rogers when I did their residential OCD program.

Tell us about your first conference. Going must have been hard, but you pushed past your fears and ended up meeting people who understand what you’d been going through. 

My first conference was in Minneapolis and I was miserable. I remember I kept telling myself I should just go home! After all, it would only take me 20 minutes and I could be out of this anxiety-provoking situation. I guess somehow I knew that even though I could feel better in 20 minutes it wouldn’t last! OCD would find me again. I had been running for years and I was so tired. I either had to fight or die. It was in Minneapolis that I met Jeff Bell. He saw me looking miserable and reached out to me. I ran from him, too. I did find him before the conference ended and we talked and I cried and we became dear friends. I kept in contact with him, I kept doing my ERP, and I slowly got stronger.

That hard work — and your friend’s support — paid off, because making your next conference experience a reality required even more gumption. 

It was three years after attending my first conference in Minneapolis and 27 of not leaving Minnesota that I started thinking about going to the conference in Chicago. That would mean an eight-hour ride on the Mega Bus, using a public restroom, a taxi cab ride to the hotel, and being more than 20 minutes away from home. At the time it seemed like a terrible idea for someone with severe contamination fears. I was terrified, but I had to do something to save my life. Even if I had managed to stay alive physically I was not living.

I made it to Chicago and that’s where I finally realized I could feel both anxious and safe. I remember standing on Navy Pier with Jeff Bell and I just started to cry, but for the first time in a very long time they were tears of happiness. I remember telling him that I finally felt alive.

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How long have you had OCD? How did you realize it was OCD — were you diagnosed by a doctor, and if so, did you have any idea you had OCD before you made an appointment? 

I’ve had OCD since about the age of three. At that time no one really knew anything about it, and I remember my parents telling me they thought I was just trying to annoy them. As I got older I started hearing and reading more about it. When I was in college I met a person who had OCD and she confirmed what I already knew. It took her six years to convince me to finally get help. I had already lost several jobs because of my OCD. So I went to my first appointment, sat down, and said, “I have OCD, can I leave now?” He was a nice doctor, but I didn’t get ERP therapy and I didn’t get better. I quit counting my hospitalizations after number 37.

Can you share some of your obsessions and compulsions with us? Was there one you considered the worst or the hardest to overcome?

When I was little everything revolved around keeping people safe. I had to say my prayers in a certain order. I would do these tapping rituals on my closet door at night and if I deviated from the pattern I would have to do the original and all of the deviations. I also had scrupulosity issues when I was fairly young. I remember my dad telling me that scrupulosity was a sin because it meant you didn’t believe in a forgiving God. I spent Saturdays going to confession; I went from church to church re-confessing because I was afraid I had forgotten something. I also had contamination and checking. I think the hardest one was the harming fears. I remember I had wanted to be an elementary school teacher. I started in the program in college but dropped out because of the harming fears. This was definitely the worst one for me because they made me feel like I was some kind of a monster and they kept me from becoming a teacher.

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

I saw many different psychiatrists and therapists, but it wasn’t until I started doing ERP that I began to improve. I kept looking for an easier way out and then realized there wasn’t one.

I sometimes say I had to hit rock bottom before I finally got help. Did you ever hit what you considered rock bottom? Tell us about it.

I feel like I was at rock bottom for a very long time. I would lie in bed at night wondering if I would or could make it through the next day. I was at a point in my life where I completely stopped making plans for a future. I truly believed that this was both  my present and my future. There was nothing else. My nights were consumed with OCD. I would plan the route I would take from my bed to my closet, what I could touch and what I couldn’t, what was a safe number to set my alarm at, the thoughts spinning and spinning until I finally fell asleep. Only to have the same thoughts reappear in my OCD dreams. As I started to do ERP and build a great support system something amazing happened: I started to make plans again. These were not plans of how I would make it through the day, these were plans of how I would live each day!

We roomed together at the conference in Boston this year, so I know you’re doing pretty well. How did you get to this point on your journey with OCD?

I finally had to face the fact that there was no eaJennCarolsy way out. This wasn’t an illness I could take medications for for a few weeks and be cured. ERP was my best option and also the hardest. I constantly have to remind myself that I don’t need to do everything perfectly. Every step I take forward is one step closer to the life I want for myself. This has always been an issue when I attend the OCD Conference because I still sleep on an air mattress because of contamination fears. In a perfect world I would jump in a hotel bed and deal with it, but the world isn’t perfect and neither am I. I just need to do my best and I will get there.

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

Don’t base the decisions you make in your life on what your OCD wants. It is your life; base your decisions on what you want.

OCD Conference in Boston

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I blogged for the International OCD Foundation again this year, recapping the conference events from my own perspective.

Enjoy! Although there is so much more to the conference than I wrote about, I hope you see how wonderful the experience can be and make plans to go to Chicago next summer.

OCD Conference: Boston Edition

OCD Conference: Saturday, Saturday, Saturday!

OCD Conference: Going Home

OCD Conference!

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The 22nd annual OCD Conference is just around the corner! I’m looking forward to four days with hundreds and hundreds of people who either have OCD, treat OCD, or want to learn more about OCD for any number of reasons.

It’s in Boston this year, so I’m especially excited because I’ve never been there. I won’t have much time to experience the “real” Boston, though, because my schedule is filling up by the minute: Cocktail hour, pub trivia, a meetup with a Facebook support group, an affiliate meeting, my presentation with Lee Baer–not to mention all of the sessions. I noticed that the psychiatrist who diagnosed me with OCD will be presenting, so I plan to sit in on his session and give him a great big hug afterward!

Follow me on the IOCDF blog to learn about the many inspirational and educational–and just plain fun–opportunities available at this conference.

Tuesday Q&A: Ethan S. Smith

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It’s a big week — the week of the 22nd annual OCD Conference! It’s in Boston this year, where the International OCD Foundation (IOCDF) is based, and I’m so excited to be a part of it again. But enough about me.

Last year Ethan Smith, a Los Angeles-based actor, writer, producer, and director, delivered the conference keynote. Ethan described his fight against severe OCD, and even as he was talking about the darkest moments of his life he managed to make the audience laugh. In retrospect, he was able to see — and share — the humor in getting kicked out of residential treatment at the OCD Institute at McLean Hospital in Boston by deliberately hurting himself and pretending to pass out on a snowbank.

Ethan will be at the conference this year as well, so be sure to check out some of his sessions.

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Photo credit: Roberto Farren

Last year, after years of suffering from OCD, you gave the keynote presentation at the 21st Annual OCD Conference. What inspired you to apply for this huge honor — and long speech?

To be honest, I wanted to give the speech the minute I knew it existed. Probably desperate is the right word when describing how badly I wanted my story out there so others wouldn’t have to go through what I went through. I knew through that speech I could impact the most amount of people. 

During your presentation you shared candid videos of yourself engaging in ERP. You said you’d never shown this footage to anyone, and suddenly you were sharing it with a room full of people. How did you find the courage to do this? Why did you think it was important for the audience to see you in your lowest moments?
 
During the intervention portion of my treatment, I was fortunate enough to have one of the therapists at the OCDI playing an almost coach role in my life, in addition to my therapist. Because of this, although I was a victim of stigma many times before getting better, I never felt embarrassed about what I had gone through because I was able to discuss my concerns, doubts, fears, and pretty much everything else as they happened in the real world, in real time. I started to feel a sense of pride and accomplishment for what I had been through. Therefore, those videos represented a completely different person. They represented what I had been and where I had come from, not who I had become. It was a shell of my former self. But a very significant shell. It’s a side of OCD people don’t often see, especially the public. It’s a far cry from quirky hand washing or laughing about germs. Seeing how low OCD can take you is necessary to reach those who haven’t hit that bottom yet. To let them know that bottom exists should they choose not to pursue treatment or take it seriously. It’s the reality of severe OCD.

You’ve said you were born with OCD. How did you realize there was a name for what you were dealing with? When were you diagnosed?

It was only apparent I was born with OCD in retrospect. I went to my first therapist at age 6 but he did not diagnose me with OCD. I just had “issues.” I was a quirky kid with emotional issues. This was 1984. Did they even have an OCD diagnosis then? I didn’t realize there was a name for it. And to be honest, I didn’t really care. I don’t think I realized it was odd behavior until high school. I knew I wasn’t like other kids, and I definitely was unhappy much of the time, but I always thought, “That’s me. That’s who I am.” I don’t think I ever considered it was something else until I was actually diagnosed. I was diagnosed at age 14 after my first panic attack in high school. I refused to go back to school. I would just walk in the school and panic. After anything physical was ruled out, I went to a “top” psychologist in the Atlanta area and he diagnosed me with OCD. 

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Ethan and IOCDF director Jeff Szymanski

As a young adult you had a fear that you’d harm yourself, a fear so powerful you became scared of your own hands. Your life must have been pure torture at the point — you couldn’t escape your own hands, after all — but we know you’ve overcome this fear. How did you do it?
 
Just to clarify, most of my young adult life was spent being afraid of illness. Not germs, but a fever was meningitis, or a headache or a brain tumor. Constant trips to the doctor, I took my temperature upwards of 60 times a day, and carried thermometers with me at all times. The fear of harming myself didn’t come until I was 32 when I that trio of being off my meds, my girlfriend breaking up with me, and my grandfather dying happened. I just spun out of control and my OCD shifted based on a question a psychologist had asked me. He asked if I was impulsive. “Would you ever impulsively hurt yourself?” I thought the question was ridiculous. Of course I wouldn’t. And then I got in the car and thought, “What if I did? What if I just lost control and started hurting myself?” That’s when the OCD shifted. That was also the day I completely stopped taking my temperature for the first time in almost 20 years. 
 
As far as how did I do it, that’s a really big question. So I’m going to give you a very simple answer: I became willing to harm myself. I became OK with the idea that it might happen. I finally embraced the uncertainty and embraced radical faith and what my doctors were telling me.

After years of treatment — you attended the McLean OCD Institute (OCDI) but got kicked out and your mom even lived with you for a semester during college — you ultimately had to help yourself. How did you realize that if you were ever going to improve you had to take responsibility for your own recovery?
 
Ahhh, finally an easy question. When I was living in the crack house and hadn’t left the bed in six days. I hadn’t eaten, showered, barely drank any water. I realized no one was coming for me. Praying hard wasn’t enough. There was no magic that was just going to take it all away. I had to meet people halfway. I had to invest in myself what others were willing to invest in me. Only then, did I stand a chance. So I got out of bed and headed toward the fire. I never looked back.

Your parents were very involved in your treatment plan. Why should family members be a part of the recovery process? Is there such thing as too much family involvement?
 
I definitely think it’s individual in terms of too much involvement. But, what seems to be a very consistent pattern with OCD is that good parenting favors the OCD, not the child. The treatment for OCD is completely counterintuitive to parenting. Therefore, it’s a family disorder. The behaviors of the parents have to be modified in order to achieve long-term success. They must be just as educated about OCD, how it works, how it affects the sufferer, what snuffs the OCD out. I’m very passionate about imparting my position on family involvement. I firmly believe true success is impossible without the family/wife/caretaker component. Otherwise, after, let’s say, residential treatment, it’s just a dry addict going back to all his druggy friends he used to hang out with. Only a matter of time before he uses again. And once that snowball gets rolling, you’re back to square 1…or worse. 

Do you have any advice for someone considering residential treatment? Advice for not getting kicked out?
 
Haha! Yeah, don’t cut open your head and dive into a snowbank pretending to be passed out. Easy…Treatment is scary, and hard, and terrifying, and it most definitely gets worse before it gets better. But like I said in the keynote, the pain you invest now is worth the pleasure you’ll experience the rest of your life. We overcomplicate treatment. Treatment, at least in theory, is easy. Listen and say yes. That’s it! That’s all you have to do. Unfortunately, in order to do that you have to not listen to your own brain, what you believe to be your gut, all that you know. You’re most likely an incredibly intelligent, smart, creative individual and you probably know it. So, being told not to listen to the part of you that you believe makes you incredibly unique and special is a tricky proposition. Slowly but surely, however, you start to hear that the OCD sounds different than “you”; it becomes less tricky. It doesn’t define you or your uniqueness. In fact, in regards to OCD, you’re not special at all. It’s all the same tornado in all of us. Sure, it may suck in different stuff, but it’s the same. 
 
OCD is like math. In math there’s a right or wrong answer, and nothing in between. Treatment is exactly the same way in my opinion. Can you get better kinda sorta trying? Sure, but I think that’s still a wrong answer. Negotiate with OCD, surfing that area between the right and wrong answer, and you’ll never truly achieve the full life you’re looking for. Fully embracing treatment, especially residential, can potentially give you that right answer, that full life. Ever think you could have OCD and serenity at the same time? Yeah, me neither. But I do.ethansmith1

You’re able to joke and laugh about your OCD. How do you feel about others joking about it? How about people who claim to be “soooo OCD” on Twitter?

You have to have it to joke about it. Just like being Jewish and making a Jewish joke. Totally kidding. Listen, I think it’s a fine line. I know a lot of people that get really angry when the term “OCD” is misused or joked about. To be honest, for the most part, it doesn’t bother me, because in most cases it comes from a lack of education. When I hear it, I see it as an opportunity to enlighten and educate so that it doesn’t happen again. Anger or frustration regarding doesn’t yield an effective result. I know what cancer is and how it affects others. For the most part, you don’t hear a lot of cancer jokes. If you do, yeah…that person is a %*$&%*. But OCD, as with many mental illnesses, is still so misunderstood and grossly misrepresented. So can I blame the majority of people for saying they’re  “sooooo OCD?” No, but I can engage those people in a friendly way and redirect into something meaningful.

You recently shared some exciting news: You’re an IOCDF spokesperson! How did this come about?

Much like the keynote, I knew I wanted to be a spokesperson the minute I discovered they existed. It was just another avenue to share my experiences on a larger scale in the hopes to make a difference. As to why it happened or came about, I definitely expressed interest in becoming one to the amazing individuals at the IOCDF. I’m not known for being quiet or introverted, so I was vocal. But, in my heart, it was never about the “title” or becoming a “spokesperson.” It was about the work. It was about those suffering and not getting help. It was about no other child or adult suffering in the way that I did. That was/is my passion and my mission. But you can’t go on a mission from your couch, so I started talking to other people. Being open about my story. Allowing my former therapists to reach out to me as a resource and talk to their patients. And then becoming involved at the conference and speaking, et cetera. This work that I do, if you can call it work, is the most fulfilling part of my life.

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

Uncertainty is one of the greatest and most exciting aspects of life. Give it a big hug. Oh…and don’t cut your head open and jump in a snowbank.

Tuesday Q&A: Jon Hershfield

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I think I first heard of Jon Hershfield on Twitter — we definitely had OCD in common, so I followed him and always loved what he had to say. And then I kept hearing about him and his first book, The Mindfulness Workbook for OCD, on OCD support pages on Facebook. People love that book! Then we ended up being situated near each other at a book signing at the OCD Conference in Los Angeles in 2014, but we didn’t have a chance to meet.H_Family_i

We went the entire conference without being formally introduced, and I thought I’d lost my chance to meet him. As my co-presenter/hotel-mate and I were walking away from the conference after it had ended, she saw Jon and his dad leaving a restaurant and shouted, “Hey, conference people! Hi, conference people!” She’s not as shy as I am, by a long shot.

So that’s when I finally met him, after the conference was over, and he was as delightful and sharp in person as he is on Twitter. Since he lived in LA, he was walking home to see his family–but he’s relocating to his first home, the East Coast, in June. His new practice, The OCD and Anxiety Center of Greater Baltimore, will be located in Hunt Valley, Maryland, and will open on June 22. Since he’s licensed in both Maryland and California, he’ll continue to work with clients in California via teletherapy, as well as new in-person clients in Maryland, focusing on mindfulness-based cognitive behavioral therapy for OCD.

When you decided to go into psychotherapy, did you know you’d end up working so closely with patients with OCD? What is it about this disorder that inspires you to help people struggling with it?

I decided to go into psychotherapy specifically because of how much cognitive behavioral therapy (CBT) had helped me in my own journey living with OCD. When I was in the thick of it (both the worst part of my OCD and the hardest parts of treatment), I began contributing to online support groups. I spent a lot of time reading and responding to emails from other OCD sufferers and discovered that processing the stories of other people with OCD was really helping me better understand the way my own OCD mind works. It was with the support of my wife, my parents, and my therapist that I decided to depart from a career in entertainment and go to graduate school for a masters in clinical psychology. I knew that all I wanted to do was CBT for OCD and actually hit up Dr. Michael Jenike for the recommendation letter in my graduate school application. So perhaps I am biased towards working with OCD sufferers because of my personal connection to the disorder, but I also like to think that people with OCD have truly special minds capable of doing amazing things. They have access to a spectrum of thoughts and creativity that is both awe-inspiring and overwhelmingly painful at the same time. Suffering occurs as a result of not really understanding how that kind of mind works and so using ineffective strategies to try to change it. The idea that we can write our own instruction manuals to better operate this OCD mind is simply fascinating to me.

Have you ever worked with a patient with a very severe case of OCD? How did you work through it?

I’ve worked with several cases of what I would describe as severe OCD. In my time at the UCLA Child OCD Intensive Outpatient Program, we only saw kids in the significant-to-severe range, and part of the reason we were able to break through the severity barrier was by providing several hours of individual CBT several days/week and incorporating the use of group treatment, parent education, and psychiatric medication management. In a simple private practice, time and resources are more limited. You typically see the OCD sufferer for a little less than an hour once or twice a week. So making progress in a severe case involves a combination of wise time management in session and the use of collateral resources (e.g., working closely with the client’s psychiatrist, bringing the family or spouse in for psycho-education). Sometimes the inclusion of home sessions can make a big difference as well. Severe OCD is as treatable as moderate OCD, so long as it is the OCD that is presenting the primary problem. If depression, for example, is getting in the way of treating the OCD (e.g., by depriving the sufferer of motivation), then that may need to be addressed first. In the end, homework and medication compliance are probably the biggest predictors of whether a severe case will become a moderate or mild case. Of the clients I have seen progress from the darkest depths of OCD to the greatest health, the thing they seem to have had in common was the willingness to let go of the idea that you have to wait to get better before pursuing the things you value (relationships, work, creating art, etc). In those cases, my job was mostly just to discourage waiting and then the exposure and response prevention (ERP) came naturally from that decision.

I’ve met several people with OCD over the years, and we all think our own obsessions and compulsions are the worst. We think, “You’ll be fine — all you worry about is inadvertently bringing down civilization because you didn’t wash your hands thoroughly enough. But obsess about killing my own child.” How do you respond to patients who have this mindset, that they’re somehow the exception who can’t be treated?

I think the next DSM should include a criterion for diagnosing OCD that says the person must have a belief that his/her obsession is unique, worse than others, and less treatable. When patients tell me this, I try to remind them that it’s not useful information. If it’s true that this or that obsession is something no one has ever obsessed about and we have to be extra special creative in constructing the treatment, it has no effect on the reality that the OCD is treatable and it’s treatable with CBT/ERP. Overly manualized treatment won’t take you very far. You have to construct the CBT to fit the OCD. So we don’t have to prove anything about how bad the obsession is. We just have to see where the behavior (physical or mental) is keeping this obsession afloat, target it, and change it.Mindfulness

Your first book, The Mindfulness Workbook for OCD, has practically been a runaway success in the OCD world. People love it. What inspired you to write it?

People have been incorporating mindfulness with CBT for a long time. ERP is about putting yourself in the presence of unwanted thoughts and practicing allowing them to be there without pushing them away. This naturally lends itself to mindfulness. When I was approached by New Harbinger to submit a proposal for an OCD book, The Mindfulness Workbook for OCD just made sense. I’m extremely grateful for the opportunity and love that I was able to reach so many OCD sufferers in a format like this. I was used to writing blogs and, well, really long-winded emails, so a book was quite the learning curve!

When you’ve gotten feedback on the book, is there any one section or technique that seems to resonate with your readers? 

Honestly the part I hear about the most is the preface to Chapter 1 in which I attempt to describe the OCD experience overall, what it’s like from the inside. Many self-help books have examples like “Bob’s story” and so on, but I wanted to have something that every reader with OCD would get, so I put one example and called it “Your story.” This is where I was thinking most personally about the material and I think that must resonate with readers. People also seem grateful for the specific descriptions of mental rituals, which has been scarce in OCD literature so far. Overall I think the book’s strongest element is that it looks at mindfulness not as an alternative or a stand-alone tool, but as something that can be used to enhance OCD treatment in harmony with cognitive therapy and ERP.FamilyMember

The best way to help someone through OCD feels so counterintuitive: Don’t reassure the person, and don’t make it easier for her to follow through on her compulsions. That’s why I think your second book, When a Family Member Has OCD, is such an important title. What advice do you give family members and other loved ones who are struggling to understand their role in the recovery process?

Family members and other loved ones have to walk a very tricky line between supporting the person with OCD that they care about and also recognizing that this person needs to do their own work to get better. I hope to drive the point home that you can make hard choices to help your family member with compassion and without cruelty. In “When a Family Member Has OCD,” I highlight four potential steps that can be taken to approach this. (1) Identify the compulsions, not the person, as the problem. (2) Invite collaboration on addressing the problem. (3) Interrupt the OCD cycle with permission (this is where “don’t reassure” comes in). (4) Integrate healthy behaviors through modeling non-OCD responses and embracing uncertainty of your own.

I have what is (sometimes controversially) referred to as pure O because I never performed the obvious outward compulsions like excessive hand-washing or checking and rechecking. Do you have a different treatment method for folks with pure O?

No. The treatment for OCD is CBT, a collection of strategies that includes cognitive restructuring, behavioral modification (ERP), and mindfulness skill development. Mental behaviors, though they may appear automatic and elusive, are nonetheless behaviors, which makes them available for targeting and treating. OCD sufferers tend to notice thoughts that others may be more likely to overlook or find unimpressive. How they address this “noticing” can come in many different forms. But I think it’s important that people recognize something like hand-washing is a physical behavior a person engages in when her mental rituals have failed to produce the relief she’s seeking. As a clinician, I might be able to get her to stop compulsively washing, but if I don’t also address the compulsive mental attempts to feel clean, relapse is inevitable.

Speaking of pure O, what do you think of the name for this type of OCD? Do you, for lack of a better word, believe in pure O?

As a clinician, it’s a truism that there is no “pure O.” There’s nothing pure about it.  You have obsessions, you do compulsions (seen or unseen), it causes disorder in your life and so, you have OCD. That is all. Some people believed for a period of time that there were people with obsessions who were not doing any compulsions and they called them “pure obsessionals” and now we know they were mistaken. In fact, when you consider that the very nature of an obsessive thought is that it is assessed as intrusive and unwanted, that initial assessment is in some ways a compulsion right there, an attempt to disown and dismiss the thought. So if you’re treating OCD and you’re using the term “pure O” to describe a manifestation of OCD, reasonable educated clinicians will frown on this. And for good reason. If you call it something other than OCD, your patients will expect some other kind of treatment, and may not do what they need to do to get better.

All this being said, there is a large and beautiful community of OCD sufferers communicating internationally on the internet. These sufferers have used social media to form online support groups and these groups naturally form sub-sections. These subsections reduce the sense of isolation that sufferers feel because they know the people they are communicating with think like they do. For those who engage in a lot of physically noticeable rituals, like washing, cleaning, arranging, and checking, there is the sense that people get it. It’s on TV, and it looks like what people call OCD when they use the word on TV. For people who struggle with primarily mental rituals and intrusive thoughts about violence, sexuality, relationships, religion, morality, and hyperawareness–what gets called “pure O”–there is a sense of being different from the “washers and checkers,” so to speak. There is this feeling of being poorly understood, overlooked, and often misdiagnosed. While I’m the last person to promote tribalism, this sense of togetherness under some name that identifies the lack of physical rituals feels important to the “pure O” sufferer. When I was seeking support on the Internet, I knew right off the top that I didn’t want to be in a digital room of people concerned with things I wasn’t concerned with. I wanted to be in the company of people who feel like they can’t stop thinking about terrible things all the time, people like me. Somehow I knew to seek out a site called “pure_o_ocd” even though I knew the name couldn’t possibly be true.

So does “pure O” exist?  Well, it depends who’s using the term and what they think it means. If it means OCD with mental rituals and it helps you to have a name that makes you feel less alone, then it exists. If it is some therapist’s marketing ploy or a way to describe a manifestation of OCD thought of as “pure” from compulsions, then no. As for other names that would work better, I haven’t been able to think of any. One day, when stigma around mental illness is a thing of the past, perhaps there won’t be a form of OCD that feels marginalized by society and there won’t be any drive to have a special name for it.

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

Don’t rely on one piece of advice. If you can access and afford to see an OCD specialist, listen to what they have to say and do the work, all of it, even if the work makes very little sense in the beginning because it’s such the opposite of what you want to do sometimes. If you can’t access a therapist, read several books on OCD, utilize a workbook, educate yourself about the disorder and teach yourself the tools to master it as best you can. Join a support group, follow an OCD blog, go to an IOCDF conference, connect with other OCD sufferers. Take your own advice and pool it together with the advice of people who know about OCD. You’re not alone so don’t be alone.

Tuesday Q&A: Shala Nicely

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It’s Tuesday, and you know what that means—we have a Q&A! This week we’re hearing from Shala Nicely, whom I first heard of when I pitched a blog post to the International OCD Foundation (IOCDF). My superduper so original idea was to draw parallels between overcoming OCD and the lyrics from “Let It Go,” the hit—and ubiquitous—song from the Disney movie Frozen. My contact there said they were already going to post a piece by Shala, but they’d be happy to get my take on it, too. Well, when I read her post I knew there was nothing I could add. It was brilliant.

Shala and I met in person on the dance floor at the OCD Conference in July 2014. If you’re not already planning to go to this year’s conference in Boston, consider it! Meeting amazing people on the dance floor is just one of many reasons to go.

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Shala and Jeff Bell

Q. Not only do you work with patients who have OCD, you have OCD yourself. How did you first realize you might have OCD, and when were you diagnosed?

A. I always knew that my mind seemed to behave a little differently than everyone else’s, but I didn’t know it was OCD until my late 20s. At that time I was in general therapy, and I happened to mention something about liking the number 4. The psychologist asked a few more well-chosen questions and diagnosed me with OCD.

Q. Once you realized what was going on, how did you go about treating the disorder?

A. Well, getting treatment wasn’t easy. I saw a couple of different therapists after getting diagnosed, but none of them mentioned exposure and response prevention therapy (ERP). So, of course, none of what they offered helped me, so I gave up on therapy. Eventually I tried medication, which worked wonders for me. Unfortunately, after taking the drug for a number of years I developed a rare side effect and had to stop taking my SSRI. My OCD came back almost immediately. I didn’t hear about ERP until I attended the IOCDF conference in 2010, more than a decade after I had been diagnosed.

In hindsight, I did not take enough responsibility for my own mental health in the years after I learned I had OCD. Granted, I didn’t have the information that’s available today on the Internet. However, I could have done some reading to find out what kind of treatment I needed. It never crossed my mind to do so because I had this implicit trust in the medical community. I’d received such good care as a child after being in an awful car accident that I just trusted that I could show up at a therapist’s office and receive the care I needed. But that didn’t happen. And that’s not all the therapists’ fault—I could have become a better advocate for myself and perhaps received the right treatment faster.

Q. You work with patients with OCD, and you have OCD yourself. How did you decide to dedicate to helping others with the same disorder you’ve struggled with yourself?

A. When I went to the IOCDF conference in 2010, I had already been thinking about changing careers. I was so astounded to learn about ERP at the conference, because I had been in and out of therapists’ offices since age 16 with OCD-related issues, and I had never heard of ERP before. Clearly, there were not enough therapists doing this type of evidence-based therapy! So I decided that would be my career change—I would become an ERP therapist. I signed up for classes when I got home from the conference and started graduate school the next month. It’s the best career move I’ve ever made, because now I can help people with OCD get the right treatment a whole lot faster than I did.

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Q. Although I learned how important it is to face my fears in order to overcome them, I never went through ERP with a therapist. To be honest, I sometimes regret foregoing it. How do you encourage hesitant patients to engage in ERP?

A. I’ve done most of my ERP on my own as well. After the conference I did group therapy to learn how to do ERP, and then I worked through my hierarchy on my own and with the self-help phone support group I started after the conference.

I encourage people who are hesitant to engage in ERP to identify their Greater Good, as my Beyond the Doubt co-founder, Jeff Bell, describes in his book When in Doubt, Make Belief. Once someone can identify how doing ERP helps them enhance their own sense of purpose and/or how it can help them be of service to others, they often find the motivation needed to face their fears and ultimately take back their lives from OCD.

Q. Believe it or not, I still haven’t seen Frozen–and I have two little nephews. However, like most of America, I’ve heard “Let It Go” many, many times, and I just love your blog post detailing its similarities to your journey with OCD. Did it hit you right away when you saw the movie or heard the song?

A. From the beginning of the movie, I was struck by the similarities between Elsa’s “powers” and what all of us with OCD experience. Then, when Elsa started singing “Let It Go,” I was blown away by the lyrics—she was singing about me and my OCD! I grabbed a note pad, started taking notes, and then wrote the Aha! Moment that night right after watching the movie.

Q. I love all of the other “Aha! Moments” you’ve written about on your website, too. Out of all those moments, did you have a bigger “aha” with one than the others?

A. I think the Aha! Moments about “the voice” of OCD and the Stockholm syndrome resonated most with me. My OCD can be so incredibly vicious, and self-compassion has been a wonderfully effective complement to ERP in helping me to quiet, and sometimes silence, that nasty voice.

Keynote Preso 2

Q. You were the 2013 keynote speaker at the OCD Conference in Atlanta. After keeping your OCD to yourself for so long, what made you decide to open up to such a large group?

A. I had three reasons for telling my story:

  1. I wanted people to understand what it feels like to have OCD: the gripping, unrelenting horror of a nightmare that OCD can cause. Sometimes OCD gets portrayed as “cute and quirky” on TV and in movies, and as you and I both know, there is nothing remotely cute about our disorder. I also wanted people to understand how important it is to get the right treatment as soon as possible—how OCD can morph, and grow, and stake its claim on more and more of the territory of your life the longer it goes untreated.
  2. I am also passionately committed to reducing the stigma that can be associated with mental illness. Would I be ashamed to admit I had asthma? Diabetes? Cancer? No. So why would I be ashamed of having an illness that originates in my brain? Why would that be viewed any differently than my having an illness that affects other parts of my body? Giving the keynote was a way to publicly embrace having OCD and to send the message that having OCD or any mental illness is not shameful. Reducing shame is so important to me. Shame keeps people from getting the help they need to reclaim their lives.
  3. Giving the keynote was my ultimate exposure. OCD had been telling me for so long that bad things would happen if I told anyone what went on in my head, and I knew I would strip the disorder of so much power if I did exactly what it was telling me not to do.

Q. Do you have advice for someone wondering how to tell their friends and loved ones about their OCD symptoms? I had such terribly wrong and embarrassing symptoms I couldn’t imagine telling a soul.

A. I think the decision if and when to share specific OCD symptoms is very personal. I’m fine sharing pretty much all of mine, as breaking Rule #1 by sharing my obsessions is part of my recovery journey. I’ll be sharing even more of them in the book version of Is Fred in the Refrigerator?, which I’m currently writing. But I don’t think everyone needs to share all of their symptoms to get better. Sometimes telling a partner, best friend, or trusted therapist is enough. I think it’s important to educate the person(s) in whom you confide so that they understand OCD and can support you appropriately. I often recommend that my clients’ family members read Loving Someone with OCD for this purpose.

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

A. Never, ever give up. You can take your life back from OCD.

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.

Q. 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?

A. 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.

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

A. 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.

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

A. 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.

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

A. 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

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

A. 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.

Q. 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.

A. 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.

image1Q. You’ve been planning a rather large event called Stand Up to Stigma on April 24. Tell us more about that.

A. 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.

Q. 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?

A. 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.

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

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