My sister Louise had a shoe tag created for this year’s June 1^st OCD/BDD Walk in Boston. I love the quote on the gift box, “A Journey of a thousand miles begins by putting your shoes on! Lace up!”Yup, that says it all. Since 2012, I’ve been walking miles and miles for OCD/BDD advocacy. I’ve hit well over the 1000 miles mark. What you see in the photo is the shoe tag on Nathaniel’s favorite running shoes, Brook’s Adrenaline GTS—his last pair. That’s my favorite brand too. He wore a size 13, but I’m only a mere size 10. My family and I are raising awareness about OCD/BDD. We started small (like steps) in 2013 and we’ve ended up bigger (more attenders, 22 official Walks around the country, and lots of accumulated miles in common). Please support the Walking With Nathaniel Team at Carlson Beach, South Boston on June 1^st. You can be there in person or virtually. You can support my personal walk fundraiser: https://support.iocdf.org/WalkingDenis-2019or join/support the WWN Team: https://support.iocdf.org/WWNBoston-2019. “Lace Up! Buen Camino!”

Many people are unaware of what Body Dysmorphic Disorder (BDD) is. To non-sufferers, it’s often seen as vanity. To sufferers, it’s a disabling disorder that significantly affects your quality of life. I am a therapist/social worker with Body Dysmorphic Disorder. I will briefly discuss my journey, how I have overcome a disorder that can limit your ability to function on a day-to-day basis, and how I am now focused on my blossoming career and personal life.

I was diagnosed with BDD at 22 years of age. Up until then, I just thought I had anxiety and depression. One day while reading The Broken Mirror by Katharine Phillips at my local bookstore, I realized that I strongly resonated with the BDD sufferers she was writing about. I understood their struggles, and recognized them in my own life. Unfortunately, it would take another 2 years after this self-diagnosis, for me to be officially and properly diagnosed.

Following my professional diagnosis, I started studying BDD. What was this disorder that had so greatly impacted my life? BDD causes a person to have a small or perceived defect about their appearance that outsiders barely notice or do not see at all. This perceived flaw is so unbearable to the sufferer that he/she avoids going places, spends obsessive amounts of time checking his/her perceived defect, gets excessive cosmetic procedures, cuts off social relationships and can become housebound. At its worst, suicide can occur. I was blessed in the sense that I was never suicidal, did not resort to cosmetic procedures, and immediately realized that my perceived flaws were probably worse in my mind than they were in reality. However, I did spend endless amounts of time in front of the bathroom mirror examining my face and obsessing over my skin. I withdrew from social interactions. I felt that I was not worthy of others because, in my mind, my skin was awful and unbearable to look at. I didn’t think I would ever find a companion or be in a relationship because my skin was so repulsive that no one would be able to see past it. I didn’t see myself for the person I truly was.

My life shifted when I began going to a therapist that specialized in BDD. She utilized Cognitive Behavioral Therapy (CBT) and Exposure and Response Prevention (ERP) therapy. She started by providing me with psycho education on what BDD was and how it manifested itself in my life.  Using CBT, I began to address my “faulty” thinking and challenge the thoughts I had about myself. Questions like: Is my skin as bad as I think it is? Does having imperfect skin mean you can’t live a healthy, happy life? This process took time because these thoughts were so ingrained in me that I needed to reprogram how I thought about myself. Following this “resetting” of sorts, I began my ERP journey. It was life changing in my recovery. Exposures put me face to face with my ultimate fears. Because my skin was my primary obsession, I was forced to use makeup to accentuate these perceived flaws, and then go out in public and interact with people. The purpose of this exercise was to do exactly the opposite of what my BDD was telling me to do. Often times, my BDD would make me feel that I shouldn’t go out because I was too gross and unappealing. Exposures push you to work through that thinking. Going out and facing your fear will initially bring on intense anxiety, but as you realize people aren’t looking and judging you, you habituate to this anxiety and the fear diminishes. It was important for me to go through a hierarchy of my exposures. I would attack each one knowing that no matter how much anxiety it would bring on, I would ultimately become stronger, healthier and able to live the life I wanted without BDD being in control.

It has been 14 years and I’m proud to say that I am in recovery. One of my most influential therapists, the late Dr. Bruce Hyman, always stressed the importance of understanding that while BDD will always be with me, it doesn’t have to control my life. I like to look at BDD as a passenger in my car. It is there, but it’s in the backseat. I am the one driving. And even though I don’t always feel entirely in control, I no longer allow my BDD to control me.

I continue to use CBT and ERP therapy in my life on a regular basis. I’ve decided to give back to the community that gave me my life back, by becoming the best BDD/OCD therapist I can be. Each day, I get to interact with people who feel as if they can’t get through this pain, and empower them with tools and strategies that will change their lives in ways they didn’t think possible.

Robyn is a Clinical Social Work/Therapist currently practicing in New York. She has expertise working with those who struggle with anxiety, obsessive compulsive disorder, OCD spectrum disorders and depression. To learn more about her and her work, head here. 

As summer winds down, it’s time to post an update and to express our gratitude once again.

First of all, thank you for your support for the June OCD Walk in Boston. Here’s the photo of 2017 Walking With Nathaniel Team. Not quite everyone is accounted for; some members had to leave early and our Canadian team of 5 (The Bangs Family) missed the photo. Our Team’s fundraising efforts topped $8,000.

In July, Judy, Carrie, Daniel, and I went to San Francisco for the annual OCD Conference, our family’s 6th. Each time we say it can’t get any better, but it does. Carrie and I moderated a BDD Panel in which three sufferers shared their stories and answered questions. As I looked around the room at the hundred or so gathered, I had to remind myself that six years earlier there wasn’t this kind of interest in knowing more about BDD.

Judy and I also offered a support group for caregivers of BDD sufferers. Twenty parents attended, and as each told his or her heartrending story, there were nods of understanding around the room and even some shared laughter. It was rewarding to see them connect and support each other, even well after the session ended.

The BDD Special Interest Group met during the conference to set up our agenda for the year. Our family is privileged to work with researchers and clinicians from around the country and abroad to promote awareness, increase funding, and encourage research. Some clinicians are now offering online CBT therapy, and research continues to provide insights into the brain anomalies in the visual cortex present in BDD sufferers. Word is getting out about the disorder so that diagnosis and treatment is happening earlier for many people.

Thank you for supporting our efforts. It is making a significant difference.

The 1 Million Steps 4 OCD Walk is the sequel to my 525-mile pilgrimage from Cheyney, PA to Boston, MA in spring 2012. This year’s walk event is celebrating its fifth anniversary, reflecting the amazing progress we have made in building an OCD Community that promotes strong advocacy and public awareness for these brain disorders. Who would ever have imagined that our membership would gather so faithful, year after year, to witness OCD and related disorders? We’ve come a long way both in steps and in miles, but more importantly, in public visibility.

As I write you this blog, I realize that it’s exactly six years ago to the week when Nathaniel was struggling so mightily against his cruel Body Dysmorphic Disorder. It didn’t look good. Judy and I could viscerally feel his deep pain, but even as parents, we couldn’t relieve it. Like today, spring was emerging in full force—the spring peepers were singing, the new flowers emerging with young vibrant colors, and the air outside was intoxicating. However, inside, our son was suffering in unimaginable ways.

This week Christians celebrated what is called Holy/Passion Week, to commemorate Christ’s final moments on earth. For us, this very same week reminds us of the similarly intense suffering that Nathaniel endured—his own way of the cross, his acute agony, and his final death and departure from earth. If Sunday April 16 is Easter for Christians, Nathaniel’s “Feast Day” on April 15 is no less significant for his family and friends.

The annual OCD Walk on June 3 celebrates Nathaniel’s courageous spirit. The Walking With Nathaniel Team is doing the very work he himself can no longer do here on earth—to witness publicly the horrors of BDD and OCD. Together we walk each step in his memory and stand strong as a Walking Team to honor his life and sanctify his struggles. Each June, Judy, Carrie, and I come to Boston and derive great comfort in seeing so many folks come together to stand against OCD and related disorders and to build, at the same time, a resilient, supportive, and loving community.

If you live in the Boston Area, please come and join the WWN Team. Our many walking steps together will help raise greater awareness and build a stronger OCD Community.  Wouldn’t Nathaniel be impressed by our determination, dedication, and unconditional love? (April 12, 2017)