Tag Archives: exposure and response prevention

Tuesday Q&A: Leah Adair

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Leah Adair is a delight! I’m lucky enough to know her, and today you get to know more about her and her journey with obsessive-compulsive disorder (OCD). Leah is full of positivity and insight and realizes that even with the torture that OCD has caused in her life she still has plenty to be thankful for. Thank you for being here, Leah!

When did you first experience symptoms of OCD, and how did you eventually realize what you’d been experiencing might be OCD?

I didn’t fully understand OCD until it upended my life five years ago. Prior to this time, I had symptoms, but they were manageable. As a child, I often apologized over and over and over again for things that weren’t even my fault. I had worries that I said something blasphemous to someone during a conversation. I would rerun conversations over and over in my head after talking with someone. I also had extremely inappropriate words get stuck on a mental loop in my head. Neither of these obsessions took a major toll on my life. I just chalked them up to being weird thoughts.

In the fall of 2010 I was hospitalized in the ICU with double pneumonia. I was on life support at the age of 28. It was a very scary time for my entire family. My parents are both medical professionals and they knew how dire this situation was. As I’ve done more research on OCD, I believe there could be a link to major medical experiences and OCD in some people. I had frequent ear infections as a child and ended up with tubes in both ears as well. Both of these major illnesses could have had an impact on my brain chemistry. Who knows—OCD also runs in families. My brother has it and I know of a few extended family members with an OCD diagnosis.

Five years ago I was in the throes of parent-teacher conferences, we were hosting some out-of-town guests, and we were getting ready to go out of state for the weekend. I was going about my day-to-day life when a thought popped into my head. Most people would just let a thought like this pass on by. My brain got stuck in this thought. It cycled through my brain nonstop. I couldn’t turn it off. Everywhere I looked, my obsession seemed to be there. It was torture. I couldn’t sleep for several months. I’d average three hours of sleep per night. I was barely able to eat and in a span of four months I lost over 30 pounds. This isn’t a diet I would recommend to anyone. I was tormented by this thought (obsession), and my compulsion was to ask for reassurance via my parents and the internet—I was constantly searching the internet to figure this out. I didn’t know it was OCD until I ran across an article about different forms of this illness. I always equated OCD with order and cleanliness. I’m someone who wants solutions to most everything. I scheduled an appointment with a therapist, started researching all of the natural remedies for OCD/anxiety, and dove into an intense workout regimen (thinking the endorphins would kick this nasty beast to the curb). The therapist I originally went to had no idea how to treat OCD. I also visited a psychiatrist and she basically just wrote me a prescription and said “good luck.” As I continued to scour the internet, I found a blog by Jackie Lea Sommers. Little did I know, she lives in the Twin Cities as well. She has a whole section of her blog dedicated to OCD. It was from interactions with her that I found out about exposure and response prevention (ERP) therapy. I went to Dr. Chris Donahue in Saint Paul for 15 weeks of ERP therapy. It was hard and intense, but I can now say my symptoms have improved by 85 percent. I’ve acknowledged that OCD is something that will never completely go away. When an individual has diabetes, they have to manage their insulin. If a person is in remission from cancer, they still need to go in for check-ups and have an awareness of their body. I view ERP as the tool box that helps me function. I also credit an amazing community of friends, a supportive and loving family, exercise, and medication.

Will you share your “stickiest” obsession with us? Did you have to approach it from a different perspective, or has a tried-and-true method helped?

Gah. Here I am thinking I’ve come so far . . . but I’m still afraid to share my stickiest obsession with the internet. OCD is so tricky. It’s like watching the worst movie you’ve ever experienced over and over and over again.

The website Beyond the Doubt has a short summary of different themes people have.

The main themes that have been present in my life are:

  • “just right” OCD—making sure I said or did something just right, and if I didn’t I replay the conversation or interaction over and over and over in my head
  • thinking I’ve said something blasphemous out loud, asking people for reassurance to find out if I actually did say something
  • fear of harming a loved one, but knowing I would never hurt anyone (harm OCD)
  • sexual obsessions—my entire life I’ve been attracted to boys and then men, but fearing that I’m living a lie (homosexual OCD)

Having OCD is difficult for anyone, but it can be particularly painful as a parent. You’re a new mother–how have you dealt with obsessions and compulsions while adjusting to a whole new lifestyle and set of responsibilities?

I was very open with family and friends prior to having our son. I wanted them to know I was afraid of how this disorder could manifest as a mom. Thankfully, it hasn’t been bad. During pregnancy my symptoms actually subsided quite a bit.  As a mom, things are so busy that I don’t have as much time to give to my obsessions. Parenting is hard, but it’s also been a great distraction. Once in a while I will get “stuck” but thankfully I am able to tell my husband or a close friend that I’m having a difficult time. I also have recognized when I need to have alone time, or do something to recharge. I’ve found that I get really exhausted in large groups where I don’t know a lot of people.

Speaking of family, how did you tell loved ones about your diagnosis and how they can help you?

When OCD first presented itself, I contacted my brother. I think he was diagnosed in high school or college. He was super helpful and encouraging. It also helped to know that I wasn’t alone. After telling my brother, I told my parents. It took me a few months to talk to my husband about it. I think a big thing I was afraid of telling him was that part of the OCD theme I struggle with had to do with him. Over the course of the year when I was diagnosed, I gradually began telling close friends. Then, one night a few years ago, I wrote a post about OCD. It was extremely liberating. It felt like I broke free of chains that were holding me back. Prior to this disorder wreaking havoc on my life, I had so many stereotypes and stigmas of people with mental health issues. I wanted society to know and understand that it could happen to anyone. Family and friends have been wonderful. It’s been beautiful to see awareness spread about this illness and to have people love me through it. My husband, Thom, has been amazing. He’s so calm and loving. I don’t expect him to ever fully understand OCD, but I’m glad he loves me through it. I thank God every day for the support system I have.

You’re the OCD Twin Cities secretary. Why did you want to get involved in a nonprofit dedicated to OCD awareness in your city? 

I felt like I needed to give back to the OCD community. I also have a strong passion for mental health awareness. The late Senator Paul Wellstone said, “We all do better when we all do better.” I believe this is true. We need each other to survive. No one is meant to fight alone. Your story isn’t fully written, and it’s definitely not over. I’ve loved getting to know the other individuals on the OCD Twin Cities board and helping create events and awareness about OCD. It’s so important for family and friends to have ways to support their loved ones as they navigate this diagnosis. I feel like OCD Twin Cities has events for everyone, whether you’re a mental health practitioner, an individual with OCD, a partner, a friend, or a family member.

I’m someone who cares deeply about others and I love helping people find ways to manage their symptoms. OCD can feel really isolating at times, and I want individuals suffering with the illness to know recovery is possible.

What do you consider the most harmful misconception about OCD, and how do you think we can help clear it up?

I think the most harmful misconception is that OCD is such an asset. I had a health provider during a physical say to me, “Your house must be so clean since you have OCD!” I didn’t have the energy to explain to her that my OCD symptoms have nothing to do with cleanliness. I think ways we can clear up misconceptions of any kind is to stop dehumanizing people. It’s so easy to make stories up about people and be fearful of mental illness. One in four people have OCD. It’s as common as childhood diabetes. Your friend, neighbor, pastor, barber, taxi driver, or family member could have OCD. It’s not something that is visible to people. It’s often something that individuals suffer with in silence. I hope and pray that our society continues to create more understanding around all mental health disorders.

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

The piece of advice I would share is: You’ve survived 100 percent of your hardest days; don’t be afraid to get help or admit you are not okay. A whole community is out there waiting to embrace you with loving arms.

Tuesday Q&A: Stuart Ralph

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

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

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

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

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

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

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

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

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

Have any of the stories especially resonated with you? 

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

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

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

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

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

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

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

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

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

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: Lee Baer

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IMG_3972 top pickIf you follow my blog or know anything about me at all — at least as far as my OCD story goes — you know how much I respect and admire Dr. Lee Baer, author of The Imp of the Mind: Exploring the Silent Epidemic of Obsessive Bad ThoughtsWhen I finally made an appointment with an OCD specialist and croaked out a few words like “bad thoughts” and “no one will love me if they know,” the psychiatrist recommended The Imp of the Mind. “It could fit in my front pocket,” he said, patting his shirtfront, “but it’s packed with good information.” (By the way, that’s only true if you have unusually large pockets, because the book isn’t that small.)

That “little” book saved me. After having silently suffered with taboo obsessions for years and years, I learned that I wasn’t actually alone — I wasn’t the only person who’d had thoughts like I’d had, and they were nice, relatively normal people, too.

Nine years later, Lee and I are collaborating on a peer-to-peer support program (stay tuned!), and we presented together at the OCD Conference in Boston in August. What a rush! As I tearfully told everyone in the audience, I was up there with my hero.

Now you have the benefit of hearing directly from him — sorry, these are all my questions, but I tried to ask what you’d want to yourself if you had the chance. Thanks, Lee!

When I was struggling the most with my taboo obsessions I was actually worried that getting better would be a negative thing. I thought, “What kind of person would I be if these terrible thoughts didn’t bother me?” and I thought the distress is what kept me from acting on them. What would you tell someone with similar fears?

This is very common: OCD is very tricky so it puts sufferers of taboo thoughts in a “damned if you do, damned if you don’t” dilemma. It is very important to recognize that the OCD is trying to make you think like this and not be fooled. CBT and/or medications will not make you any less empathetic to terrible things that happen in the real world–instead, they will keep you from over-reacting to “what-if” scenarios that OCD conjures up in your mind.

What made you decide to treat OCD?

I have specialized in treating patients with OCD and related problems since about 1985, when Drs. Jenike, Minichiello, and I established one of the first OCD treatment and research programs in the country at Massachusetts General Hospital, because we were fascinated by this disorder, in which otherwise highly intelligent people experienced thoughts and rituals that they were unable to control. Also, at that time, OCD was considered to be resistant to existing treatments so we saw solving this problem as both a challenge and an opportunity to make a real difference in people’s lives.

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I recommend The Imp of the Mind all the time. As you know, it was one of the first things my psychiatrist prescribed the day he diagnosed me with OCD, and just knowing I wasn’t the only person with taboo obsessions like mine helped tremendously. Why did you focus on this type of OCD?

The idea for this book developed soon after we founded the OCD Institute residential treatment program at McLean Hospital in 1997. In the course of running several groups in this program, I noticed that patients with taboo obsessions felt ashamed to discuss their problems in group settings with other OCD sufferers with problems like excessive hand-washing or checking doors or electric plugs. When I asked why, these sufferers of taboo obsessions told me they felt that the other patients’ problems–although very troubling–did not have a moral component and did cause one to question if he or she was truly evil. They worried that these other patients — although they also had OCD — would not understand their taboo obsessions and think they, in fact, wanted to do the terrible things they imagined. To address this problem, I began a separate evening group for individuals with taboo obsessions, and found that the participants experienced great relief in being able to share their experiences with others who had similar problems. It was through running this group that I recognized the need for a book on this topic to reach others who were suffering in private. And it was through my experience with these groups over several years that I learned much of what I know about these taboo obsessions.

In The Imp of the Mind you share an example from White Bears and Other Unwanted Thoughts by Dr. Daniel Wegner. The basic idea is that if you tell someone they’re forbidden from having a certain thought — in this case, picturing a white bear — they’ll be even more likely to have the thought. In fact, the thought becomes stronger the more they try to rid it from their mind. How can someone with taboo intrusive thoughts overcome the urge to push the obsessions out of their minds as quickly as possible? The thought of murdering a loved one is so painful it’s a natural response to recoil at it.

Dr. Wegner’s book explains one key reason for the “stickiness” of taboo obsessions in a very easy-to-understand way. Dr. Wegner and I often discussed this topic, both before and after he joined the Harvard College faculty, and I was saddened by his untimely passing two years ago. We agreed that the first step for sufferers of taboo obsessions was for them to understand that thoughts passing through our minds are not as important as we often believe them to be. Everyone has thoughts they don’t like having at times, but the very universal nature of these thoughts proves that they are not dangerous — if this were not the case, violent and sexual attacks would be occurring daily in every home and office! Taking this leap of faith is often the first step in successful treatment. Secondly, sufferers have to understand that OCD is “tricky” and it will try to get you to fight the obsessions, giving them strength, through the mechanism of “thought suppression” that Dr. Wegner researched so thoroughly. Truly understanding these two concepts often reduces the OCD sufferers’ suffering instantly.

People with taboo obsessions are terrified they’ll act on their thoughts. They think the thoughts must mean something; otherwise they wouldn’t have them. Without giving in to our compulsion to be reassured, what can you tell us about the likelihood of people with OCD acting on their obsessions?

Although I tell my patients (only once, mind you!) that based on my experience, and the experience of my colleagues who treat OCD, they will not act on their violent or sexual obsessions. However, I also know that this will not really work to reassure them, because OCD preys on doubt and tries to get them to find absolute, 100 percent certainty. Yet there is no absolute certainty about anything in the future — even about the sun rising tomorrow — so the solution is to learn to live with the feelings of uncertainty, even of things that are extremely unlikely.

Why do you recommend ERP to patients with OCD?

I tell my patients that we all have a “rational brain” and an “emotional brain.” Their rational brain can understand that their taboo obsessions are not meaningful, and they need to learn to let these obsessions pass without fighting them, while their emotional mind can continue to react with strong, uncomfortable feelings to these thoughts. The most effective, non-drug treatment we have for reducing or eliminating this reaction of their emotional mind is through exposure and response prevention. I describe this process in detail in my book Getting Control.

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Many people with “pure O,” that is, mostly obsessions coupled with mental compulsions, wonder how ERP will work for them. You can’t have advise them to touch a toilet seat and then resist the compulsion to wash their hands, for example. Let’s say someone with pedophilia OCD comes to you. How might you go about exposures?

I’d first help them to identify situations that they are avoiding due to their obsessions. Next I would have them gradually go into these situations while learning to tolerate the discomfort and obsessions that come while doing it. This is called in-vivo, or real-life, exposure and response prevention, and I always try to begin with this if possible. We’d also probably prepare a worst-case scenario of their worst fear coming true for them to record and listen to at home until their discomfort goes down without ritualizing. This is called imaginal exposure and response prevention.

What advice do you have for folks who live in rural areas or far from quality care?

I would definitely suggest they start by joining the International OCD Foundation (IOCDF) and, if there is one, their local chapter. This will provide them a wealth of support and information about support groups and providers in their area, as well as the annual meetings for sufferers and their families to learn about treatment for OCD.

You and I have been working on a peer support program — our goal is to match folks who have taboo obsessions with people who have had similar obsessions and have been some progress toward recovery. What are the benefits of such support?

My experience has always been that it benefits both individuals greatly: I have yet to have a patient get better from their taboo obsessions who is not excited about the idea of having the chance to give back to another sufferer at an earlier stage of dealing with this disorder (probably because they remember how hard it was at the beginning for them). And for my new patients, hearing from someone with similar symptoms who has gotten better gives them hope, and also lets them feel comfortable sharing some of their most private fears, often for the first time.

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

Try and find someone you trust to talk with about your obsessive thoughts. This can be a family member, a doctor, a clergy person, or someone affiliated with the IOCDF. But no one should have to deal with OCD alone.

Tuesday Q&A: Janet Singer

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Happy Tuesday! I’m pleased to host a fellow blogger and author today, Janet Singer of OCDTalk. Janet is a tireless advocate for the proper treatment for OCD — and she doesn’t even have the disorder herself. After watching her son suffer through many missteps of treatment, Janet dedicated herself to spreading awareness about OCD and how to best treat it, namely, exposure and response prevention (ERP) therapy.

Janet’s first book, Overcoming OCD: A Journey to Recovery, came out earlier this year. A gripping and sometimes heartbreaking read, it is a memoir of her family’s experience with treatment — medication, “talk therapy,” and residential treatment. You can read my review, but first let’s chat with Janet.

OvercomingOCDYou’ve been blogging about your experience as a parent of a child with OCD, and you also wrote a book, Overcoming OCD. So far it’s not something your son has shared as openly as you have. What did he think when you told him you wanted to start a blog, as well as contribute to existing blogs, in order to help others like him get the proper treatment sooner?

You are absolutely right that my son doesn’t like to talk about his experiences with OCD, though he doesn’t hide it from his friends. I actually asked his permission to blog and work on a book, as I didn’t want to become involved in anything that would make him uncomfortable. He saw how passionate I was and realized how helpful our family’s story could be, so he was fine with it. His only request was that I use pseudonyms for our family.

You could have easily receded into the background after Dan triumphed over OCD, but you have been tireless in your efforts to spread awareness about this often misunderstood disorder. Tell us why.

What initially propelled me forward was the fact that ERP therapy is not well known or widely used to treat those with OCD, even though it is the first-line psychological treatment approach as recommended by the American Psychological Association. It was so unacceptable to me that I decided I would spread the word myself! My advocacy efforts widened and evolved quickly, and now I talk about anything and everything related to OCD. But spreading the word about ERP, and letting people know that OCD, no matter now severe, is treatable, is what got me going, so to speak.

Was writing a book about your family’s experience always a goal, or did it become apparent that it was something you needed to do as you advocated more and more in the OCD community?

It was always a goal of mine, even before we had our “happy ending” as I honestly felt our story could be helpful to so many people. I did put it on the back burner for a while as I was so busy and involved with my blog, but I knew at some point, I needed to write that book.

How did you first realize Dan needed help? Did he have obvious compulsions, or did he come to you to tell you about his symptoms? 

We first realized Dan needed help when he came to me and my husband and said, “I have OCD. I need help.” Seriously, we had no clue, even though he was 17 and still living at home at the time. He diagnosed himself with the help of the Internet. Because his compulsions were mostly mental, it was easy for him to hide them. Of course in hindsight, we now know there were signs.

When he was first diagnosed, what treatment did he seek?

His long-time pediatrician gave him 10 mg of Prozac and suggested he see a therapist. So off he went to the local psychologist in town, who told us he treated OCD. He used “talk therapy” with Dan, and told us his OCD was “no big deal.” Sigh. So many mistakes were made!

Janet, I read your book, and let me tell you, it was heartbreaking at times. You watched your son deteriorate before your eyes, and you and your family put all the hope you had left in a residential treatment program. Dan’s treatment didn’t go as planned, however. You began to worry that he was too attached to the program and wasn’t learning how to re-enter the real world, particularly the college he’d worked so hard to get into. What do you think should have happened differently?

My main complaint about the residential treatment program is that my husband and I felt deliberately shut out of all aspects of Dan’s care while he was there. While we understand that we didn’t need to know the specific details of his OCD or even his ERP therapy, we absolutely should have been involved in decision-making that would potentially affect his life’s goals and his dreams. There is no question the treatment center knew how to treat OCD. But they didn’t know our son. They saw Dan in the worst shape of his life, so of course they couldn’t really know him as a person — his values, hopes, dreams, goals. We naively thought we would be encouraged to collaborate with the treatment providers to figure out the best ways to help Dan. That never happened.

I know many people need residential treatment, and it’s possible to thrive after completion. Do you have advice for individuals who may be entering such a program, or for their parents, so that they get the most out of it?

For parents, I would recommend asking questions before your child even attends. Make sure you feel comfortable with your expected level of involvement in your child’s treatment, and make sure to speak up if you feel you are not being heard. So many parents feel intimidated by “the experts” and just defer to whatever they recommend. I think this is a big mistake. Nobody knows your child, or cares about your child, as much as you do, and your thoughts, opinions, and feelings should absolutely be taken into account. I don’t have OCD so it’s hard for me to advise someone who is entering a program, but I do know how important it is to commit yourself fully to the intensive treatment. It’s scary, but in the end, so worth it.

Another roadblock on Dan’s path to recovery was overmedication. At one point he was diagnosed with ADHD, an analysis you completely disagreed with, and he was medicated for that, as well. How can a person with OCD empower oneself to take treatment one step at a time in order to avoid a situation similar to Dan’s?

That’s a great question, Alison, and I’m not sure I’ve got a good answer. I could say “educate yourself,”  or “research different meds,” etc. but Dan was in no condition to do any of that himself. He was doing so poorly at the time,  and was happy to take a new drug that “might” help him. And he trusted his doctors. And because his OCD was still so intense, he often wasn’t thinking clearly. Though I don’t have a good answer to your question, it brings up the importance of having loved ones advocating for those with OCD when things are really bad.

It seems that Dan hit rock bottom at a particularly awkward time — he was 19, so he wasn’t a child anymore, but he also wasn’t a fully independent, mature adult who knew how to navigate the mental health care system on his own. How did you and your husband overcome some of the hurdles you faced in this parental gray area?

You are absolutely right that his age complicated things. Because he was over 18, his doctors couldn’t tell us anything without his permission. Dan was happy to include us in everything, so this was really only a problem at the residential treatment center, when the staff did not communicate with us. I think his age was more of an issue for us as parents. We tried to treat him like a “normal” 19-year-old, but how do you do that when your child is barely functioning? As he got better, we had to let go more and more, even though it was scary for us as parents. It was a constant balancing act. I forced myself to put some of my worries aside so that Dan could move forward toward a life of independence. I reminded myself that while it would have been easier for me to just keep Dan close to home and monitor his every move, it really wasn’t what was best for him.

That brings up a common issue in treating OCD. Oftentimes the best way to help a person with OCD is to not help, meaning we shouldn’t enable him or offer too much reassurance. How did you make sure you were helping Dan find the right treatment without defaulting to what probably felt natural as a mother — comforting him, reassuring him, doing whatever it took to ease his distress?

Great question. When I first found out he had OCD, I comforted and reassured him all the time because, as you say, that’s what mothers do. Looking back, it’s amazing to me that none of Dan’s treatment providers ever explained to us that accommodating Dan only strengthened his OCD. That’s something we learned through our own reading, etc. Families need to be educated! Honestly, once we understood how and why reassurance fuels the fire of OCD, it was easy to stop because we knew it was best for Dan. Also, Dan would actually tell us when we were inadvertently enabling him, as he wanted to get well so badly. As we worked toward finding the right treatment, and went through so many ups and downs, I’m sure we enabled him at times without realizing it…it was a definite learning process — doing the “opposite” of what your instincts tell you isn’t easy!

How is Dan doing now?

Thankfully, Dan continues to do well. He is 26, working in his chosen field, and living with his girlfriend. And he’s happy. What more could I ask for?

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

Don’t wait one more day to get the right help. OCD is treatable! I have never met anyone who has regretted doing ERP therapy. The only regret I hear is for not having done it sooner.

Tuesday Q&A: Elizabeth McIngvale

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I’m so pleased to be hosting International OCD Foundation spokesperson Elizabeth McIngvale this week! When I first started researching OCD, suspecting that I might have it myself, I was comforted to see Elizabeth’s face on the IOCDF home page. It made me realize anyone can have OCD, that it doesn’t discriminate, and that there is hope. While I didn’t identify with her symptoms—she struggled with the compulsion to wash her hands excessively, taking hours out of her day—I was glad to see a face to OCD, even just one.

Elizabeth inspired me so much I asked her to write the foreword to my book, Being Me with OCD. (Thanks again, Elizabeth!) Her generosity and commitment to spreading awareness certainly don’t end there, but let’s start at the beginning.

Liz McIngvale

When you were diagnosed with OCD at age 13, the doctor told you and your parents your symptoms were too severe to be treated. That must have been devastating news. What made your parents persevere and get you the treatment you needed?

It was absolutely devastating to hear and really drained us of most of our hope. However, my parents just wouldn’t take this for an answer and knew there had to be more options; they knew there had to be hope. So, they kept searching. Years went by where we went from one provider to another searching for the help that I so desperately needed. It wasn’t until my dad opened the Houston Chronicle (our local newspaper) one morning and read about the Menninger Clinic possibly coming to Houston. In that article they spoke about the OCD clinic that they had at the time. My dad immediately picked up the phone and soon I was scheduled to see a psychiatrist who was commuting back and forth between Houston and Topeka for Menninger. She saw me for a few visits and made the recommendation to my parents that I needed to be in an inpatient treatment center for my illness due to the severity.

You were so young—just 15—when you checked into the Menninger Clinic. Were you scared, or was it scarier to continue living as you had been, with your life taken over by obsessions and compulsions?

I have never been as scared and fear-ridden as I was on February 5, 2002. Just two days after my 15th birthday my parents and sister sat down and told me they were taking me to the Menninger Clinic (a clinic I knew a lot about). I didn’t want to go and in fact tried to flee and avoid the situation. However, my parents were prepared and had multiple plans in place in the case that I tried this. Hours later we arrived in snow-covered Topeka, Kansas. I was sick to my stomach (I vomited while there) and feared that my parents would leave me in that hospital forever. My mom promised me that I would get to come home as soon as I got better…so I thought I would never leave since I didn’t believe there was any hope for me or chance that I could learn to manage my symptoms. I had only had failed treatment prior so I didn’t know that there was effective treatment for my OCD. It was scary, lonely, and intense—but I would do it all over again 100 times if needed, for Menninger, the therapists, and the other patients forever changed my life.

How did you transition from inpatient care at Menninger back into real life? How did you deal with any setbacks you may have had?

The transition from Menninger back home was exciting but proved to be tough. I was so excited to go home and feel “normal” again. I could do things I hadn’t done in years—take a shower in 5 minutes, wear different color clothes, etc. However, I was 15 and didn’t realize the importance of relapse prevention and continuous therapy. I slowly declined and didn’t stay on top of my treatment. Two years later I ended up back at Menninger for a second time; this time the clinic was in Houston. It was a learning process for me and still is. The transition from residential to home is tough, especially if you don’t have your schedule lined up, your aftercare in place, and goals to keep you motivated. I have learned a lot over the years about OCD treatment. The one most important thing I have ever learned is that you have to learn to be your own therapist. You have to be able to employ the tools you have learned on your own, when you need them, and that is what helps ease transitions for me because they can be really tough—especially when you go from a team of providers to feeling alone. It’s important to know yourself and what you need, when you need it. Above all—the most important thing is your safety. If you are ever feeling so overwhelmed or alone that you are not sure you are safe (thoughts of suicide) you should call the National Suicide Prevention Lifeline at 800-273-8255, call 911, or go to your closest emergency room.

How do you explain your hand-washing compulsion to people who don’t understand OCD?

It’s hard to explain anything to someone when it is foreign to them. The best way I can explain my OCD is that I experience these unwanted intrusive thoughts that I would do anything to get rid of; when I engage in compulsions, whether it’s hand-washing, reassurance seeking, etc., I feel immense relief. However, that relief is only temporary and long-term it makes my OCD worse. For my hand-washing rituals I think those are the most obvious to others as people can visibly see when I wash my hands and/or when my hands are raw and chapped. There is no easy way to explain rituals, other than I know they don’t make sense and I know that I shouldn’t do them but this immense amount of anxiety leads me to engage in the rituals in order to get relief from terrible intrusive thoughts. The rituals can quickly consume your life and strip you of your happiness. They are debilitating and exhausting.

Although you’ve dealt with relapses, you’ve come incredibly far since your diagnosis. Watching video footage of yourself in your worst struggles must feel like watching an entirely different person. What do you attribute your recovery to? And how do you deal with a hint of a relapse?

I still live with OCD every day. Watching the videos can be eye-opening but I know that could have been me yesterday and could be me tomorrow. The most important thing for me is to live day by day and remember the tools that help keep my OCD managed. I still do rituals and certainly still live with intrusive thoughts every day of my life. However, I have learned how to best manage my OCD for me and what that looks like. I still see a therapist once a week and when my OCD is kicked up I know to step up my therapy and to proactively do the work that we know works—exposure with response prevention (ERP).

You’re one of the most well-known advocates out there: Your first TV appearance was on Dr. Phil, and you’ve since been on Good Morning, America, The View, ABC News, and the VH1 OCD Project, among other national programs. Why do you think it’s so important to spread awareness of OCD?

Thank you very much! To me it has always just been about making a difference and helping others. It was hard to share my story and open up my personal life to the world but I knew if it helped one person, it would all be worth it. The emails, phone calls, and messages have confirmed why I am so public about my OCD and why I do the work that I do. I think for OCD and all mental illnesses they need faces, stories, and real people sharing their real experiences. This is the only way anyone will really care, listen, and understand. The more of us who are willing to be open about our OCD and/or our mental illness the more we will wipe away the stigma that too often surrounds mental health issues.

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You were the first national spokesperson for the International OCD Foundation, and you were only 17. How did that come about?

I had begun speaking about my OCD on local and national shows and they asked if I would be willing to be their national spokesperson and put a face to the illness. This opportunity changed my life, career, and perspective on mental illness, OCD, and stigma.

What advice do you have for someone struggling with how to “come out” as having OCD, especially teenagers?

I think first and foremost it’s important to read about the illness and understand what OCD is and what the proper treatments are for OCD. Understanding these things first will help you be able to better explain the diagnosis and treatment available. I think you should always start with family/loved ones as they are often closest to you and already may recognize/know that something is going on. I would explain what you have been going through and give them some specific examples. I would also bring information with you and direct them to the International OCD Foundation website and affiliates so that they can learn more about the illness. I think we often assume that when we tell people there is going to be a negative reaction, but what I have found and what I often hear is that the reaction isn’t as bad as we anticipated and often we are offered empathy and support from people who care about us.

Tell us more about the Peace of Mind Foundation

The Peace of Mind Foundation is a non-profit foundation that is dedicated to improving the quality of life of OCD sufferers and caregivers through research, education, advocacy, and support. We are a 501c(3) non-profit that works to enhance the lives of those impacted by both OCD and mental illness. We work to provide training and education for OCD to local organizations, schools, and all those interested. We engage in advocacy on the local, state, national, and international level through outreach events, speeches, and PR. We offer scholarships to the International OCD Foundation conference. And lastly, we run and operate the OCD Challenge website, which is a free self-help website designed for those living with OCD. The website is accessible anywhere in the world with an Internet connection and will be live in eight different languages by the end of the year. The website offers interactive videos and the content is based on the principles of ERP for OCD in order to guide individuals through education, intervention, and relapse prevention for their OCD.

You’re now a licensed therapist treating OCD. How does your own experience inform how you treat patients with OCD?

I think it gives me insight to understand the true severity of the illness and some of the complex issues that arise when you live with a mental illness. It does not make me any better qualified; OCD training is very specific and there are wonderful OCD therapists who do not live with the illness but are just as qualified, if not more qualified, to treat OCD than I am (my own therapists, for example). However, I think there is a connection and understanding that is deeper than knowledge—it’s about a lived experience we both share.

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

You are not alone, you don’t have to suffer in silence, and help is available. With the appropriate treatment (ERP or ERP and medication) you can gain control of your OCD and learn to manage your illness. Treatment is number one always, but the second thing I recommend is to meet someone else who lives with OCD. You can do this through the International OCD Foundation’s conference, support groups, or online groups. Understanding that there is help available and that you aren’t alone are in my opinion the two most important things to help you gain control of your OCD. Lastly, I would recommend giving back when and if you are ready. I have found some of my greatest healing has come from sharing my story and helping others in need with OCD or a mental illness.

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: Jessica Bishop

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Welcome to the first of a new series I’m launching today, Tuesday Q&A! The “Tue” in “Tuesday” kinda, sorta rhymes with “Q,” doesn’t it? (Humor me.) Over the past few years, I’ve met some pretty amazing and inspirational people in the OCD community, and I want to share some of their stories with you.

Jessica

Let’s kick it off with Jessica Bishop, a 24-year-old who has OCD—and who’s working to spread awareness and give others hope.

Jess, you’re such an inspiration. I chose you for my first Q&A because you recently completed residential treatment at McLean Hospital in Boston and are now doing well back in the “real world.” How did you realize this more intensive type of treatment was right for you? Did you try other treatments first?

I realized that this type of treatment was right for me because I was attending therapy three times a week, which did not help. I then ended up in a few other programs before realizing I needed help in order to function.

You were there from August 26 to November 9. Were you nervous about checking in to McLean for an extended stay?

I was actually very excited. I wasn’t nervous because I was ready to get help and get my life back, understand what was going on and how to manage it.

Describe a typical day at McLean.

A typical day at McLean OCDI unit starts at 8:30 a.m., on the dot. Morning group and goal setting starts; appointments and symptom-specific groups along with daily coached ERP sessions are from 10 to 12. The days were hard, long, and tiring. But I kept pushing myself through and saw positive outcomes with the help and support from my peers, my behavioral therapist, and my family therapist, and the guidance from amazing counselors.

Can you share some of your obsessions and compulsions with us? Was there one that was harder to deal with than others?

Some of my OCD types are contamination, emotional contamination, perfectionism, iteration fears, health anxiety, and intrusive thoughts. Many of my rituals involve checking, counting, reassurance seeking, and asking. My hardest types are irrational fears of glass ketchup bottles and bars of soap. I still believe that the ketchup is poison and it will attack me. When it comes to bars of soap it has nothing to do with germs or dirt, really; my OCD tells me that it’s washing away people’s positive qualities and turning them bad, even if I am just looking at it.

Living among so many people who actually understand OCD must have been so comforting, but the main goal was to re-enter your regular life and apply what you learned. How was the transition for you?

Being at OCDI was very helpful being surrounded by others who understood me and even had the same multiple OCD symptoms. The transition out for me was not as easy as I was hoping; it took a while to adjust and still some days are easier than others. But I have the tools that I try to utilize and put to work on a daily basis according to my values.

TherapyDog

McLean has therapy dogs. Tell us more about them and how they helped.

The therapy dogs made a huge impact by providing positive support by playing and letting us pet them, give them treats, and take them for walks. They helped me the most when I was feeling sad or upset and their presence calmed me down. Pets are one of the best types of therapy; they are so innocent and cute!

What advice do you have for anyone who’s considering entering a residential treatment program?

My best advice would be to trust your treatment team! Don’t leave anything out and fight through the hardest days as those are the best days to reward yourself with learning, achieving, and competing goals.

You recently started a blog. What inspired you to start writing about your experiences with OCD?

I did just start a blog. I am inspired to help others understand the true meaning of being “so OCD” and to help end the stigma.

What’s next for you? Do you have long-term plans for advocacy?

I don’t know what is next for me at this time. I am currently working on treatment and ERP still with my outpatient team and I am finishing college to get my bachelor degree. I plan to continue to further my education and involvement with OCD, mental health, and expressive therapy.

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

The best advice I would have to give out would be to remind yourself that OCD just wants power, it likes to lie and take over. Don’t let it—use mindfulness and grounding techniques to get by, take your thoughts, emotions, and feelings with you wherever you go, sit with them, and continue on. At the end of the day it doesn’t matter how you felt, but how you lived. And there is help and there is hope!

The Thin Line Between Helping and Hindering

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Notice the title of this post refers to “hindering,” not “hurting.” I hesitate to refer to any kind of help a person offers as hurtful because the intentions are good. But it’s so often hard to know what to do to help someone with OCD. After my book reading earlier this month, we opened the floor to questions. One woman, a mother of two young boys, asked how a person can support a friend or child with OCD. I told her supporting someone with OCD can feel like the opposite of supporting a friend–being too reassuring can enable a person with OCD, making it easier for the person to continue performing the compulsions that offer temporary relief and ultimately hold them back from living a full, rich life.

I shared the example of Howie Mandel’s wife washing his money for him. A spouse helping out with laundry or the dishes or making the bed isn’t a bad thing. But she’s doing him no favors by going along with his fear of touching money that other people have handled. Mandel can get by with this, I think, because he’s a celebrity. He probably has people who can handle money for him. He’s not facing his fears. And defeating OCD is all about facing the things we fear most.

But offering the “right” kind of support isn’t easy, even for me, and I have OCD. In the psychiatric community, exposure and response prevention (ERP) therapy is considered the gold standard for overcoming obsessions and compulsions. That doesn’t mean anyone can administer it, though. I’ve been chatting with a man who has OCD, and he’s asked me several times if I think he has homosexual OCD (HOCD) or if he might have latent homosexual tendencies. He’s terrified that he might be gay, and I think I know why: He loves his wife and has a newborn daughter he is completely enamored with. “She is the love of my life,” he said. “My everything. My air. My heart.”

Well, there you go. Losing his wife and daughter would be the absolute worst thing to happen to him, and that is why he worries he’s gay. How could he stay married to his wife if he’s gay? And then if they get divorced, when will he see his daughter? As much as I know–as much as I can know–that he’s not gay, that OCD is playing tricks on his mind, I’m not doing him any favors by constantly reassuring him. On the other hand, I’m a layperson, just another poor soul who’s been afflicted with terrible obsessions. Is it really responsible of me to try to lead some sort of halfway ERP over Facebook? Of course not. All I can do is listen, tell him I’ve been there, tell him what has helped me–to remind myself that obsessions are there because OCD is a beast, not because I’m a bad person. To remind myself that everyone has bad thoughts, but people with OCD can’t let those thoughts go. To calmly tell myself that it’s just a thought, and it holds no meaning I don’t give it. It’s hard to tell someone I can’t keep reassuring him because the relief he feels is just as fleeting as the relief a compulsion provides.

How do you offer support to friends with OCD? If you have OCD yourself, do you tell the person everything that helped you? Do you just listen? Do you offer book recommendations? Let me know! I want to be the best source of support possible, and it’s such a gray area that I will take any advice I can get.