Alison Dotson's Blog, page 8

Tuesday Q&A: Aneela Idnani

[image error]When today’s guest, Aneela Idnani, was at the 2017 OCD Conference in San Francisco, she met a man from London—Stuart Ralph of the OCD Stories—and told him she was from Minneapolis. He said, “You should meet Alison Dotson. She lives in Minneapolis.” It took her traveling to California and chatting with a man from England to ultimately connect with me back home—and I love that! Part of me thinks, “Geez, Alison, you could do a better job of networking with people in your own city,” but another part wonders at the forces that pull people together.

Aneela, as you’ll learn as you read on, is smart and innovative and is changing people’s lives for the better. After struggling with compulsive hair pulling, or trichotillomania, for years, she finally learned she had a disorder—and once she knew how to help herself, she set out to help others. My favorite kind of person.

Q. You’ve lived with compulsive hair pulling. How did it affect your daily life?

As a kid, I was a hair twirler and thumb sucker. I started hair pulling in my tweens and I didn’t really know why back then. It was just soothing and comforting. I now understand, through actively taking the time to look back and analyze, that my hair-pulling disorder started after I moved to a new town and got worse after my dad fell sick with cancer. The biggest effect trichotillomania had was on my own self-esteem. I was always nervous people would find out. It consumed me. I hid my pulling—mostly eyebrows and eyelashes—using makeup. But I always felt people could tell. I let this vicious cycle feed a voice of negative thoughts—I’m ugly, I’m not worthy of love, I’m stupid.

I sort of went through the motions growing up. Numb from my hair pulling and the loss of my dad. Sure, I had friends—great friends—but still always felt very alone. And I let myself give up on things I loved like going out for the basketball team or playing saxaphone because of my fear of being found out.

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Q. Many people with OCD and related disorders say it took them years to get the proper diagnosis and the right treatment.  How did you realize you had a more serious problem and not just a habit, and how did you go about getting help? Did you go through a period of being misunderstood and misdiagnosed?

In the past few years I’ve met thousands of people with trichotillomania, dermatillomania, and other body-focused repetitive behaviors (BFRBs). From all the stories I’ve heard, one common theme has emerged: For most of us, we spent our early years not knowing that these compulsive pulling and picking behaviors were in fact mental health disorders. We hid in shame and fear of judgment because of the perception that these actions are choices. We felt alone in the battle. I also found that most people used Google to figure out that this “thing” they were doing was an actual thing!

This education and understanding is a huge hurdle that millions have yet to cross. But when they do it starts the true journey to recovery.

In my twenties, I realized my hair pulling had become a serious problem. It was affecting my life too much—mostly the physical manifestation fed my insecurities and my negative self-speak. That translated to actions that held my life back. This is when I did my Google search, found the term “trichotillomania,” and found the nonprofit organization for people like me: TLC Foundation for BFRBs.

After I took the time to understand the disorder, I still hid and met secretly with a psychologist and a hypnotist. Neither worked for me because neither understood the disorder because of lack of education. I also joined an online Facebook support group and started using some of the strategies from there.

Finally, about four years ago I met with a psychologist trained by BFRB.org. She used cognitive-behavioral therapy (CBT) and other processes designed to help people with dermatillomania and trichotillomania. It was during this time that I learned that while these disorders are classified as OCD-related, they are not exactly OCD. The thought process is different and therefore the treatments are different.

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Q. How did you tell your loved ones about your diagnosis? Did many already suspect your BFRBs had become an obstacle for you?

Ha. I was caught! Three years ago, as I was getting ready in the morning, my husband caught me without eyebrows. I just hadn’t gotten my makeup on in time. He asked me and in that moment I decided to stop lying and finally shared my mental health condition with the man who promised to love me in sickness and in health.I don’t know if others suspected. I think the opposite, because sometimes friends would actually compliment my eyebrows—not knowing they were drawn on!

Q. Let’s say a school-ager approaches you and says, “I can’t stop pulling my hair, and my classmates have started to notice and make fun of me. Even my teacher seems annoyed and tells me to just stop because I’m distracting everyone. How can I help them understand?” 

The best way to help people understand something foreign is to compare it to something familiar. To help someone understand BFRBs, I would ask that person, “Would you tell a person with diabetes or cancer to ‘just stop’ having those issues?”

Whether it is diabetes, cancer, or BFRBs, the body is doing something internally that we have no control over. It’s just that for hair pulling or skin picking or nail biting, it causes an external action, giving the appearance that there is a choice and we are doing this voluntarily to ourselves.

I think when we can get others to understand, then we will be met with compassion instead of judgment. The unfortunate part is that we have to do the hard work of explaining and hope that others have open hearts and minds to take in the knowledge we are imparting.

Q. How did you go from struggling with hair pulling to founding your own company, HabitAware, through which you help countless others with BFRBs?

I’d probably still be eyebrow-less if my husband, Sameer, hadn’t caught me a few years ago. After I told him that I had trichotillomania we talked about it and he began noticing my behavior more. Then one evening after work, while relaxing on the couch watching TV, his hand slowly pulled mine away from my head and I turned to him and said, “I wish I had something that notified me.” We are techies and knew it was possible. When we couldn’t find it, we set out to build it. We formed a team at a Minneapolis hack-day event and when the prototype worked for me we kept working nights and weekends until we had better—and more—prototypes to test with other people. And when those worked for them, we just kept pushing and the doors kept opening until we knew we had to give up our “real” jobs to make our idea a reality for others. That’s how we started HabitAware and it’s really been incredible the number of lives we’ve been able to change since our March 2017 launch!

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Q. Tell us about Keen, the smart bracelet designed to bring awareness to and refocus users from BFRBs.

Keen is that thing I wished for that would notify me when I was pulling. Keen is a smart bracelet, or habit tracker, that uses customized gesture detection to bring awareness to an unwanted behavior. Training Keen takes less than a minute with our mobile app. When Keen senses a mathematical match between an actual hand movement and the trained gesture, it vibrates. This vibration, in a sense, distracts, the brain. It shifts the behavior from the subconscious to the conscious mind. It wakes a person up and is just a gentle reminder that “Hey, your hands are not where you want them to be.” With this newfound awareness, a person wearing Keen now has the power to make a new choice and can retrain their brain away from the unwanted behavior and toward healthier replacement strategies.

I am so thankful for this disorder because it led us to inventing Keen and to helping so many around the world find hope, peace, and a powerful tool to help overcome!

Q. How can my readers help spread awareness of BFRBs?

We are in this together and if we want others to understand the pain of mental illness we need to share how are lives are affected. We need to work together to end the stigma and fight for equality and access to mental health care. So my ask of your readers is to share my story and to share their story.

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

I believe hiding our disorders, because of fear of judgment, is holding us back from recovery. Our secrets are making us sicker. We need to be open and vulnerable—knowing that some people just won’t appreciate the gift you are sharing with them. Dismiss them and keep sharing anyway. It will help you release the burden. If you are hiding, please let it out! It can be writing in a journal, painting on a canvas, or talking to a friend or loved one. You never know whose life you can touch or how your sharing can cause a ripple effect! I wish you love, strength, and awareness.

Book review: Payton Is Afraid of Dirt

[image error] Suggested age range 6 to 11 years old

Kids with obsessive-compulsive disorder (OCD)—and their parents—will feel less alone and more empowered after they’ve curled up with Payton Is Afraid of Dirt by Shanna Simpson, illustrated by Idmary Hernandez (Future Horizons, 2017). Payton isn’t afraid of just dirt: He’s worried germs will make him sick, and he’ll get others sick, so he cleans his room, washes his hands, and avoids touching “dirty” objects. Compulsive hand-washing is perhaps the most widely known symptoms of OCD, and Payton performs this compulsion enough that his parents notice.

Payton’s family worried. Dad said, “Why are you cleaning your room so much?”

While no kid is lucky to have OCD, Payton is lucky that his compulsions were visible to his family and they were able to get him the right help. Too often family members don’t have any idea that kids are suffering because they’re dealing with mental compulsions they don’t know how to explain. Payton has a head start! His parents have been concerned for a while, and when it gets to the point that Payton no longer enjoys his favorite activity, playing baseball with his best friend, they decide to take him to a psychiatrist.

The scene with the diagnosing psychiatrist is a little long, but it’s thorough and helpful. It’s used to explain what OCD is and how it’s treated, and it should give young readers an idea of what an appointment with a psychiatrist will be like. Several strategies are noted, and medication is mentioned as a possibility as well. While the gold standard of exposure and response prevention (ERP) isn’t spelled out, it was hinted at when Payton slowly built up to touching a baseball, and readers may also like the ideas to put worries in a special box or to “shrink” obsessions in a machine.

I highly recommend that teachers and parents read Payton Is Afraid of Dirt; parents can read it themselves as well as to their child. The book ends on a hopeful note, and while the overall message may not reflect reality for many with OCD (as it takes an average of 14 to 17 years to get a proper diagnosis), it is positive: Payton is diagnosed early, his family is supportive, and he gets better, which is really the goal of spreading OCD awareness.

Review: Payton Is Afraid of Dirt

[image error]

Suggested age range 6 to 11 years old

Kids with obsessive-compulsive disorder (OCD)—and their parents—will feel less alone and more empowered after they’ve curled up with Payton Is Afraid of Dirt by Shanna Simpson, illustrated by Idmary Hernandez (Future Horizons, 2017). Payton isn’t afraid of just dirt: He’s worried germs will make him sick, and he’ll get others sick, so he cleans his room, washes his hands, and avoids touching “dirty” objects. Compulsive hand-washing is perhaps the most widely known symptoms of OCD, and Payton performs this compulsion enough that his parents notice.

Payton’s family worried. Dad said, “Why are you cleaning your room so much?”

While no kid is lucky to have OCD, Payton is lucky that his compulsions were visible to his family and they were able to get him the right help. Too often family members don’t have any idea that kids are suffering because they’re dealing with mental compulsions they don’t know how to explain. Payton has a head start! His parents have been concerned for a while, and when it gets to the point that Payton no longer enjoys his favorite activity, playing baseball with his best friend, they decide to take him to a psychiatrist.

The scene with the diagnosing psychiatrist is a little long, but it’s thorough and helpful. It’s used to explain what OCD is and how it’s treated, and it should give young readers an idea of what an appointment with a psychiatrist will be like. Several strategies are noted, and medication is mentioned as a possibility as well. While the gold standard of exposure and response prevention (ERP) isn’t spelled out, it was hinted at when Payton slowly built up to touching a baseball, and readers may also like the ideas to put worries in a special box or to “shrink” obsessions in a machine.

I highly recommend that teachers and parents read Payton Is Afraid of Dirt; parents can read it themselves as well as to their child. The book ends on a hopeful note, and while the overall message may not reflect reality for many with OCD (as it takes an average of 14 to 17 years to get a proper diagnosis), it is positive: Payton is diagnosed early, his family is supportive, and he gets better, which is really the goal of spreading OCD awareness.

Book Review: Payton Is Afraid of Dirt

[image error]Kids with obsessive-compulsive disorder (OCD)—and their parents—will feel less alone and more empowered after they’ve curled up with Payton Is Afraid of Dirt by Shanna Simpson, illustrated by Idmary Hernandez (Future Horizons, 2017). Payton isn’t afraid of just dirt: He’s worried germs will make him sick, and he’ll get others sick, so he cleans his room, washes his hands, and avoids touching “dirty” objects. Compulsive hand-washing is perhaps the most widely known symptoms of OCD, and Payton performs this compulsion enough that his parents notice.

Payton’s family worried. Dad said, “Why are you cleaning your room so much?”

While no kid is lucky to have OCD, Payton is lucky that his compulsions were visible to his family and they were able to get him the right help. Too often family members don’t have any idea that kids are suffering because they’re dealing with mental compulsions they don’t know how to explain. Payton has a head start! His parents have been concerned for a while, and when it gets to the point that Payton no longer enjoys his favorite activity, playing baseball with his best friend, they decide to take him to a psychiatrist.

The scene with the diagnosing psychiatrist is a little long, but it’s thorough and helpful. It’s used to explain what OCD is and how it’s treated, and it should give young readers an idea of what an appointment with a psychiatrist will be like. Several strategies are noted, and medication is mentioned as a possibility as well. While the gold standard of exposure and response prevention (ERP) isn’t spelled out, it was hinted at when Payton slowly built up to touching a baseball, and readers may also like the ideas to put worries in a special box or to “shrink” obsessions in a machine.

I highly recommend that teachers and parents read Payton Is Afraid of Dirt; parents can read it themselves as well as to their child. The book ends on a hopeful note, and while the overall message may not reflect reality for many with OCD (as it takes an average of 14 to 17 years to get a proper diagnosis), it is positive: Payton is diagnosed early, his family is supportive, and he gets better, which is really the goal of spreading OCD awareness.

Reducing Skin Picking by Creating Art: Liz Atkin

[image error]I’m old enough to remember what life was like before easy access to the Internet, and especially before social media. Since platforms like Facebook and Twitter have exploded, I’ve had the opportunity to connect with people I’d never have even heard of before.

One of those people is today’s guest, Liz Atkin. I ran across her on Twitter and was instantly intrigued. When Liz’s hands are idle, she’ll compulsively pick at her skin, which is a problem. But she eventually came up with a brilliant solution: Occupy her hands by creating charcoal drawings on any newspaper that’s lying around on her commute (usually on the London Underground). Read on for more about this creative advocate from across the pond!

You struggled with compulsive skin picking for more than 20 years. Can you tell us more about compulsive skin picking?

Compulsive skin picking (CSP), also known as dermatillomania or excoriation, is a complex physical and mental disorder. Picking at skin is a very normal human behavior, but CSP is categorized by the repetitive picking at skin to the extent that significant damage is caused, and it impacts on a person’s daily functioning. It’s not known why humans develop this disorder. For some, environmental factors influence the development of skin picking or hair pulling disorders; others have hereditary links where family members may pick. CSP may start by picking at an existing blemish, or even at healthy skin, in an attempt to smooth it out or make it feel more “normal,” but the picking leads to scabs, infections, and eventually scarring, which causes a vicious cycle where the behavior loops. They are part of a family of disorders know as body-focused repetitive behaviors, which includes trichotillomania, the hair pulling disorder.

There is currently no cure, but a lot of important research into skin picking and hair pulling disorders is currently happening in the U.S. In the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, the diagnostic criteria includes “recurrent skin picking that results in skin lesions, repeated attempts to stop the behavior, the symptoms cause clinically significant distress or impairment, the symptoms not being caused by a substance or medical, or dermatological condition and the symptoms not being better explained by another psychiatric disorder.” Medication helps many, and cognitive-behavioral therapy (CBT) or habit reversal therapy are also valuable treatment options if you’re suffering.[image error]

Did you know you had a disorder, or did you think it was a bad habit you couldn’t overcome? When did you realize what was actually going on? 

I suffered in silence for a very long time, probably 20 years or more, hiding the behavior every day. I had no idea it was a disorder. I was 29 when I first had the courage to Google it.

I would experience an urge to pick, but sometimes it was very unconscious. This could affect different parts of my body: I’d pick my face, my hands, my back and shoulders, my arms, my feet. Many people think it would hurt, but actually it’s the opposite. It’s not about harming the body intentionally; those of us with skin picking are trying to perfect the skin by picking off a blemish. That urge to pick could be overwhelming, and although the damage could be very severe with my skin raw and bleeding, the gratification to pick could cause me to carry out the behavior over and over again. Sometimes I’d zone out and lose hours picking in front of the mirror. “Zoning out” could actually feel soothing, but the after-effects were extremely hard to cope with—not just the marks, wounds, and scars, but the guilt and shame of the disorder dominated my life. It also developed into something I did subconsciously; some nights I would pick until the early hours of the morning. I would even pick in my sleep.

I masked and covered the illness from those closest to me, wearing clothes that concealed the parts of my body covered in scabs and scars, and using make-up to mask it on my face. The guilt, shame, embarrassment, and anxiety was terrible. Eventually I had no choice really but to try and help myself because it was destroying me. So what do you do with a disorder that is both a conscious urge and an unconscious behavior? That’s where my journey with art began.

I had always had a fascination for the body and performance, so I studied theater. This led me to complete a BA in drama, and then a master’s in dance.

During the MA in dance, I began exploring and studying my disorder. I’d never had therapy at that point, so a class exercise looking at everyday movement patterns as choreography led me to look at the body-focused repetitive behavior of my skin picking. Over the course of two years I slowly began to make photographic artworks directly about how it felt to live with this disorder. I’ve been working with textural materials like latex, clay, and acrylic paint to transform the skin over the last 10 years. It has helped me recover and learn to come to terms with the illness.

More recently, drawing has become one of the best ways of all to channel the disorder and transform it.

[image error] You’ve largely overcome your compulsive skin picking.  One rather amazing technique that has worked for you is what you call compulsive charcoal—you make charcoal drawings to occupy your hands. Tell us more! How did it come about?

I had CBT therapy during an episode of severe depression and chronic anxiety in 2014 with nearly a year off work. My skin picking had returned very badly. It was during this time my #CompulsiveCharcoal began by accident. A friend gave me a box of charcoal sticks as a present, and to stave off panic attacks and keep me focused during long commutes on the London Underground, I started drawing in sketchbooks. I noticed how relaxed and focused it helped me be. It was during one of those trips I ran out of pages, so I picked up and graffitied a discarded copy of the Metro free newspaper that was on a seat beside me. I posted a photo of the drawing on Instagram, and it generated a lot of positive reactions. It’s a kind of graffiti recycling, drawing onto adverts or images in the newspapers and upcycling them.

Now, it’s a thing I do on newspapers, wherever I am in the world. I draw on planes, trains, and buses. This isn’t just some kind of art project for the sake of it. Whenever I am sedentary, skin picking is something my hands will do automatically, so to stop that from happening, I draw.

This has has taken me on adventures to the other side of the world, to the M1 Singapore Fringe Festival. My two-week trip in January 2017 was sponsored by British Council, and I created more than 300 free #CompulsiveCharcoal drawings, and gave a series of public talks on skin picking and art at National University of Singapore, Lasalle College of the Arts, and Khoo Teck Puat Hospital. A film about my trip by Channel News Asia was viewed by 150,000 in the first 24 hours.[image error]

You’ve combined your artistic talent with spreading awareness of body-focused repetitive behaviors (BFRBs), but your advocacy isn’t limited to your artwork. What else have you done to draw more attention to these often misunderstood disorders?

Much of this has been a happy accident. I didn’t train as an artist; I certainly had no idea how transformative art was going to be in my life. Much of it has evolved organically through the act of doing it. Because of the transformative experiences I have had with art, it is now a fully connected part of my life. I teach art and drama to all ages. I work in hospitals, hospices, prisons, universities, and schools, approaching creativity as a hugely important tool to help others. Art is my greatest tool for recovery.

I had no idea what an incredible tool drawing would be to stop the CSP, but it’s become the greatest solution. Someone told me recently the drawings I create even look very itchy, which seemed like a very appropriate way to describe them! They are very quick. Each one takes just one minute; the speed and energy of the mark-making is absolutely akin to the skin picking. It helps me refocus my hands and fingers, be really present in the moment, and transform the urge of skin picking into a different repetitive action. Since I don’t really need the drawings (I just need to do them), I began handing them to curious passengers on the London Underground who’d caught my eye and obviously wondered why I was furiously drawing at that speed in the middle of a packed carriage. Acts of kindness and advocacy wherever I am.

I now speak out for mental illness, educating others and reducing stigma. Whenever I am asked, I try to say yes! That includes public talks, specialist commissions, residencies, and exhibitions. My story and art have been profiled in interviews for BBC Breakfast, BBC World Service Outlook, BBC Radio 4 Woman’s Hour, BBC Radio London, London Live, Al Jazeera TV, and BBC Arabic. Other media interviews include Huffington Post, Mashable, Metro, i Newspaper, The Mighty, The Daily Bruin Los Angeles, The Londonist, Bloomberg Business China, VICE Magazine UK, Diva Magazine, and Like-Minded Magazine, Amsterdam.

In 2016 I was announced as a World Health Innovation Ambassador. I was the keynote speaker at the 2016 Global Conference in USA for TLC Foundation for Skin Picking and Hair Pulling Disorders. My international advocacy includes a week in California in October 2015 speaking to junior doctors at Keck School of Medicine at University of Southern California, University of California: Santa Barbara, and to Skin Picking patients at The OCD Center of Los Angeles. In 2017 I took part in the M1 Singapore Fringe Festival: Art & Skin sponsored by British Council, delivering a series of lectures and art workshops at hospitals and universities, and creating more than 400 of my free #CompulsiveCharcoal drawings on public transport.

In the UK I have spoken on compulsive skin picking, art, and mental health for two TEDx events, Wellcome Collection, Critical Voices, Depression Alliance, Bethlem Gallery, Dragon Café/Mental Fight Club, Royal Society of Public Health, and Changing Minds at Southbank Centre. I was a speaker at the Global Conference for the Body Dysmorphia Foundation 2016 and Diversity Health Conference at University of Central Lancaster. [image error]

Do you have advice for someone who’d like to get into advocacy but isn’t sure how? 

For a long time I didn’t feel able to say my artwork was about skin picking. That all changed for me in 2013 when I was offered an exhibition at Bethlem Gallery at Bethlem Royal Hospital in the UK, which is one of the oldest psychiatric hospitals in the world. It was a moment where I felt able to tell the truth, and I found it very liberating. I have met many others who have also started to share their lived experience and I think it can really help people to connect with others and contribute to shifting change in how mental illness is perceived.

I realized that one encounter, one moment of identification with someone, whether that’s in real life or on social media like Twitter or Facebook, could cause a powerful ripple effect. It might prompt someone to seek help, get treatment, and start their own recovery journey. It also connects our experiences; I no longer feel alone in this disorder. I now speak out about this skin picking every day. It’s been a way to take back control of my life, but also I’ve found strength in being an advocate for well-being and mental health; it’s a way to share hope and recovery. Many people chat to me on the tube; little conversations about mental health happen with strangers about my graffiti drawings. I do up to 60 a day; in two years, I’ve given away up to 16,000 free drawings. That’s 16,000 mental health conversations and from that many thousands of people who may live with, or know someone who lives with, mental illness, or potentially CSP. Every drawing was a moment of connection, of advocacy for mental health, and a chance to let others know I am drawing because of CSP and I now carry free postcards to explain the disorder.

What do you consider the most common misconception people have about skin picking?

Many people think it’s just a bad habit, or something they ought to be able to just stop doing. The reality is many of us are hardwired with this genetically. Knowing that has helped with self-acceptance; it has helped me come to terms with it a lot. It’s not my fault, and not something I can just switch off or stop doing; skin picking movement patterns have been part of me for more than 30 years, so for me it has been about finding a way to change that, to rethink it, look after myself. Finding art, a personalized recovery tool, has been invaluable. It probably saved my life when I was at my lowest point with severe depression and chronic anxiety.

Many others think it’s a form of self-harm, which is a real misconception. These are disorders in their own right, with very different characteristics, and the intention often starts with wanting to smooth or perfect the skin, not to cause a wound.

It’s also worth saying 1 in 25 are thought to suffer from a BFRB—these are common, not strange, but many dismiss them as just a bad habit.

If you could share just one piece of advice with others who struggle with compulsive skin picking, what would it be?

Find your personal pattern—when do you pick, where, and how. For me bathroom routines and mirrors were tricky. So setting a timer to limit how long I’d be in the bathroom was useful. I knew it happened when sedentary or bored; I’d pick my fingers traveling on the train, and I’ve learned that keeping my skin moisturized does help me not scan for scabs or irregularities to pick at. And as it would happen when stressed or anxious, I feel I found a soothing activity—for me it’s drawing, which can occupy my hands, calm my mind, and engage my imagination. These have been hugely helpful. Finding activities with repetition seem to really work for me; the disorder functions through touch, gaze, and movement, so finding other activities to engage hands and motion are useful!

Reducing skin picking by creating art: Liz Atkin

[image error]I’m old enough to remember what life was like before easy access to the Internet, and especially before social media. Since platforms like Facebook and Twitter have exploded, I’ve had the opportunity to connect with people I’d never have even heard of before.

One of those people is today’s guest, Liz Atkin. I ran across her on Twitter and was instantly intrigued. When Liz’s hands are idle, she’ll compulsively pick at her skin, which is a problem. But she eventually came up with a brilliant solution: Occupy her hands by creating charcoal drawings on any newspaper that’s lying around on her commute (usually on the London Underground). Read on for more about this creative advocate from across the pond!

You struggled with compulsive skin picking for more than 20 years. Can you tell us more about compulsive skin picking?

Compulsive skin picking (CSP), also known as dermatillomania or excoriation, is a complex physical and mental disorder. Picking at skin is a very normal human behavior, but CSP is categorized by the repetitive picking at skin to the extent that significant damage is caused, and it impacts on a person’s daily functioning. It’s not known why humans develop this disorder. For some, environmental factors influence the development of skin picking or hair pulling disorders; others have hereditary links where family members may pick. CSP may start by picking at an existing blemish, or even at healthy skin, in an attempt to smooth it out or make it feel more “normal,” but the picking leads to scabs, infections, and eventually scarring, which causes a vicious cycle where the behavior loops. They are part of a family of disorders know as body-focused repetitive behaviors, which includes trichotillomania, the hair pulling disorder.

There is currently no cure, but a lot of important research into skin picking and hair pulling disorders is currently happening in the U.S. In the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, the diagnostic criteria includes “recurrent skin picking that results in skin lesions, repeated attempts to stop the behavior, the symptoms cause clinically significant distress or impairment, the symptoms not being caused by a substance or medical, or dermatological condition and the symptoms not being better explained by another psychiatric disorder.” Medication helps many, and cognitive-behavioral therapy (CBT) or habit reversal therapy are also valuable treatment options if you’re suffering.[image error]

Did you know you had a disorder, or did you think it was a bad habit you couldn’t overcome? When did you realize what was actually going on? 

I suffered in silence for a very long time, probably 20 years or more, hiding the behavior every day. I had no idea it was a disorder. I was 29 when I first had the courage to Google it.

I would experience an urge to pick, but sometimes it was very unconscious. This could affect different parts of my body: I’d pick my face, my hands, my back and shoulders, my arms, my feet. Many people think it would hurt, but actually it’s the opposite. It’s not about harming the body intentionally; those of us with skin picking are trying to perfect the skin by picking off a blemish. That urge to pick could be overwhelming, and although the damage could be very severe with my skin raw and bleeding, the gratification to pick could cause me to carry out the behavior over and over again. Sometimes I’d zone out and lose hours picking in front of the mirror. “Zoning out” could actually feel soothing, but the after-effects were extremely hard to cope with—not just the marks, wounds, and scars, but the guilt and shame of the disorder dominated my life. It also developed into something I did subconsciously; some nights I would pick until the early hours of the morning. I would even pick in my sleep.

I masked and covered the illness from those closest to me, wearing clothes that concealed the parts of my body covered in scabs and scars, and using make-up to mask it on my face. The guilt, shame, embarrassment, and anxiety was terrible. Eventually I had no choice really but to try and help myself because it was destroying me. So what do you do with a disorder that is both a conscious urge and an unconscious behavior? That’s where my journey with art began.

I had always had a fascination for the body and performance, so I studied theater. This led me to complete a BA in drama, and then a master’s in dance.

During the MA in dance, I began exploring and studying my disorder. I’d never had therapy at that point, so a class exercise looking at everyday movement patterns as choreography led me to look at the body-focused repetitive behavior of my skin picking. Over the course of two years I slowly began to make photographic artworks directly about how it felt to live with this disorder. I’ve been working with textural materials like latex, clay, and acrylic paint to transform the skin over the last 10 years. It has helped me recover and learn to come to terms with the illness.

More recently, drawing has become one of the best ways of all to channel the disorder and transform it.

[image error] You’ve largely overcome your compulsive skin picking.  One rather amazing technique that has worked for you is what you call compulsive charcoal—you make charcoal drawings to occupy your hands. Tell us more! How did it come about?

I had CBT therapy during an episode of severe depression and chronic anxiety in 2014 with nearly a year off work. My skin picking had returned very badly. It was during this time my #CompulsiveCharcoal began by accident. A friend gave me a box of charcoal sticks as a present, and to stave off panic attacks and keep me focused during long commutes on the London Underground, I started drawing in sketchbooks. I noticed how relaxed and focused it helped me be. It was during one of those trips I ran out of pages, so I picked up and graffitied a discarded copy of the Metro free newspaper that was on a seat beside me. I posted a photo of the drawing on Instagram, and it generated a lot of positive reactions. It’s a kind of graffiti recycling, drawing onto adverts or images in the newspapers and upcycling them.

Now, it’s a thing I do on newspapers, wherever I am in the world. I draw on planes, trains, and buses. This isn’t just some kind of art project for the sake of it. Whenever I am sedentary, skin picking is something my hands will do automatically, so to stop that from happening, I draw.

This has has taken me on adventures to the other side of the world, to the M1 Singapore Fringe Festival. My two-week trip in January 2017 was sponsored by British Council, and I created more than 300 free #CompulsiveCharcoal drawings, and gave a series of public talks on skin picking and art at National University of Singapore, Lasalle College of the Arts, and Khoo Teck Puat Hospital. A film about my trip by Channel News Asia was viewed by 150,000 in the first 24 hours.[image error]

You’ve combined your artistic talent with spreading awareness of body-focused repetitive behaviors (BFRBs), but your advocacy isn’t limited to your artwork. What else have you done to draw more attention to these often misunderstood disorders?

Much of this has been a happy accident. I didn’t train as an artist; I certainly had no idea how transformative art was going to be in my life. Much of it has evolved organically through the act of doing it. Because of the transformative experiences I have had with art, it is now a fully connected part of my life. I teach art and drama to all ages. I work in hospitals, hospices, prisons, universities, and schools, approaching creativity as a hugely important tool to help others. Art is my greatest tool for recovery.

I had no idea what an incredible tool drawing would be to stop the CSP, but it’s become the greatest solution. Someone told me recently the drawings I create even look very itchy, which seemed like a very appropriate way to describe them! They are very quick. Each one takes just one minute; the speed and energy of the mark-making is absolutely akin to the skin picking. It helps me refocus my hands and fingers, be really present in the moment, and transform the urge of skin picking into a different repetitive action. Since I don’t really need the drawings (I just need to do them), I began handing them to curious passengers on the London Underground who’d caught my eye and obviously wondered why I was furiously drawing at that speed in the middle of a packed carriage. Acts of kindness and advocacy wherever I am.

I now speak out for mental illness, educating others and reducing stigma. Whenever I am asked, I try to say yes! That includes public talks, specialist commissions, residencies, and exhibitions. My story and art have been profiled in interviews for BBC Breakfast, BBC World Service Outlook, BBC Radio 4 Woman’s Hour, BBC Radio London, London Live, Al Jazeera TV, and BBC Arabic. Other media interviews include Huffington Post, Mashable, Metro, i Newspaper, The Mighty, The Daily Bruin Los Angeles, The Londonist, Bloomberg Business China, VICE Magazine UK, Diva Magazine, and Like-Minded Magazine, Amsterdam.

In 2016 I was announced as a World Health Innovation Ambassador. I was the keynote speaker at the 2016 Global Conference in USA for TLC Foundation for Skin Picking and Hair Pulling Disorders. My international advocacy includes a week in California in October 2015 speaking to junior doctors at Keck School of Medicine at University of Southern California, University of California: Santa Barbara, and to Skin Picking patients at The OCD Center of Los Angeles. In 2017 I took part in the M1 Singapore Fringe Festival: Art & Skin sponsored by British Council, delivering a series of lectures and art workshops at hospitals and universities, and creating more than 400 of my free #CompulsiveCharcoal drawings on public transport.

In the UK I have spoken on compulsive skin picking, art, and mental health for two TEDx events, Wellcome Collection, Critical Voices, Depression Alliance, Bethlem Gallery, Dragon Café/Mental Fight Club, Royal Society of Public Health, and Changing Minds at Southbank Centre. I was a speaker at the Global Conference for the Body Dysmorphia Foundation 2016 and Diversity Health Conference at University of Central Lancaster. [image error]

Do you have advice for someone who’d like to get into advocacy but isn’t sure how? 

For a long time I didn’t feel able to say my artwork was about skin picking. That all changed for me in 2013 when I was offered an exhibition at Bethlem Gallery at Bethlem Royal Hospital in the UK, which is one of the oldest psychiatric hospitals in the world. It was a moment where I felt able to tell the truth, and I found it very liberating. I have met many others who have also started to share their lived experience and I think it can really help people to connect with others and contribute to shifting change in how mental illness is perceived.

I realized that one encounter, one moment of identification with someone, whether that’s in real life or on social media like Twitter or Facebook, could cause a powerful ripple effect. It might prompt someone to seek help, get treatment, and start their own recovery journey. It also connects our experiences; I no longer feel alone in this disorder. I now speak out about this skin picking every day. It’s been a way to take back control of my life, but also I’ve found strength in being an advocate for well-being and mental health; it’s a way to share hope and recovery. Many people chat to me on the tube; little conversations about mental health happen with strangers about my graffiti drawings. I do up to 60 a day; in two years, I’ve given away up to 16,000 free drawings. That’s 16,000 mental health conversations and from that many thousands of people who may live with, or know someone who lives with, mental illness, or potentially CSP. Every drawing was a moment of connection, of advocacy for mental health, and a chance to let others know I am drawing because of CSP and I now carry free postcards to explain the disorder.

What do you consider the most common misconception people have about skin picking?

Many people think it’s just a bad habit, or something they ought to be able to just stop doing. The reality is many of us are hardwired with this genetically. Knowing that has helped with self-acceptance; it has helped me come to terms with it a lot. It’s not my fault, and not something I can just switch off or stop doing; skin picking movement patterns have been part of me for more than 30 years, so for me it has been about finding a way to change that, to rethink it, look after myself. Finding art, a personalized recovery tool, has been invaluable. It probably saved my life when I was at my lowest point with severe depression and chronic anxiety.

Many others think it’s a form of self-harm, which is a real misconception. These are disorders in their own right, with very different characteristics, and the intention often starts with wanting to smooth or perfect the skin, not to cause a wound.

It’s also worth saying 1 in 25 are thought to suffer from a BFRB—these are common, not strange, but many dismiss them as just a bad habit.

If you could share just one piece of advice with others who struggle with compulsive skin picking, what would it be?

Find your personal pattern—when do you pick, where, and how. For me bathroom routines and mirrors were tricky. So setting a timer to limit how long I’d be in the bathroom was useful. I knew it happened when sedentary or bored; I’d pick my fingers traveling on the train, and I’ve learned that keeping my skin moisturized does help me not scan for scabs or irregularities to pick at. And as it would happen when stressed or anxious, I feel I found a soothing activity—for me it’s drawing, which can occupy my hands, calm my mind, and engage my imagination. These have been hugely helpful. Finding activities with repetition seem to really work for me; the disorder functions through touch, gaze, and movement, so finding other activities to engage hands and motion are useful!

Tuesday Q&A: Liz Atkin

[image error]I’m old enough to remember what life was like before easy access to the Internet, and especially before social media. Since platforms like Facebook and Twitter have exploded, I’ve had the opportunity to connect with people I’d never have even heard of before.

One of those people is today’s guest, Liz Atkin. I ran across her on Twitter and was instantly intrigued. When Liz’s hands are idle, she’ll compulsively pick at her skin, which is a problem. But she eventually came up with a brilliant solution: Occupy her hands by creating charcoal drawings on any newspaper that’s lying around on her commute (usually on the London Underground). Read on for more about this creative advocate from across the pond!

You struggled with compulsive skin picking for more than 20 years. Can you tell us more about compulsive skin picking?

Compulsive skin picking (CSP), also known as dermatillomania or excoriation, is a complex physical and mental disorder. Picking at skin is a very normal human behavior, but CSP is categorized by the repetitive picking at skin to the extent that significant damage is caused, and it impacts on a person’s daily functioning. It’s not known why humans develop this disorder. For some, environmental factors influence the development of skin picking or hair pulling disorders; others have hereditary links where family members may pick. CSP may start by picking at an existing blemish, or even at healthy skin, in an attempt to smooth it out or make it feel more “normal,” but the picking leads to scabs, infections, and eventually scarring, which causes a vicious cycle where the behavior loops. They are part of a family of disorders know as body-focused repetitive behaviors, which includes trichotillomania, the hair pulling disorder.

There is currently no cure, but a lot of important research into skin picking and hair pulling disorders is currently happening in the U.S. In the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, the diagnostic criteria includes “recurrent skin picking that results in skin lesions, repeated attempts to stop the behavior, the symptoms cause clinically significant distress or impairment, the symptoms not being caused by a substance or medical, or dermatological condition and the symptoms not being better explained by another psychiatric disorder.” Medication helps many, and cognitive-behavioral therapy (CBT) or habit reversal therapy are also valuable treatment options if you’re suffering.[image error]

Did you know you had a disorder, or did you think it was a bad habit you couldn’t overcome? When did you realize what was actually going on? 

I suffered in silence for a very long time, probably 20 years or more, hiding the behavior every day. I had no idea it was a disorder. I was 29 when I first had the courage to Google it.

I would experience an urge to pick, but sometimes it was very unconscious. This could affect different parts of my body: I’d pick my face, my hands, my back and shoulders, my arms, my feet. Many people think it would hurt, but actually it’s the opposite. It’s not about harming the body intentionally; those of us with skin picking are trying to perfect the skin by picking off a blemish. That urge to pick could be overwhelming, and although the damage could be very severe with my skin raw and bleeding, the gratification to pick could cause me to carry out the behavior over and over again. Sometimes I’d zone out and lose hours picking in front of the mirror. “Zoning out” could actually feel soothing, but the after-effects were extremely hard to cope with—not just the marks, wounds, and scars, but the guilt and shame of the disorder dominated my life. It also developed into something I did subconsciously; some nights I would pick until the early hours of the morning. I would even pick in my sleep.

I masked and covered the illness from those closest to me, wearing clothes that concealed the parts of my body covered in scabs and scars, and using make-up to mask it on my face. The guilt, shame, embarrassment, and anxiety was terrible. Eventually I had no choice really but to try and help myself because it was destroying me. So what do you do with a disorder that is both a conscious urge and an unconscious behavior? That’s where my journey with art began.

I had always had a fascination for the body and performance, so I studied theater. This led me to complete a BA in drama, and then a master’s in dance.

During the MA in dance, I began exploring and studying my disorder. I’d never had therapy at that point, so a class exercise looking at everyday movement patterns as choreography led me to look at the body-focused repetitive behavior of my skin picking. Over the course of two years I slowly began to make photographic artworks directly about how it felt to live with this disorder. I’ve been working with textural materials like latex, clay, and acrylic paint to transform the skin over the last 10 years. It has helped me recover and learn to come to terms with the illness.

More recently, drawing has become one of the best ways of all to channel the disorder and transform it.

[image error]

You’ve largely overcome your compulsive skin picking.  One rather amazing technique that has worked for you is what you call compulsive charcoal—you make charcoal drawings to occupy your hands. Tell us more! How did it come about?

I had CBT therapy during an episode of severe depression and chronic anxiety in 2014 with nearly a year off work. My skin picking had returned very badly. It was during this time my #CompulsiveCharcoal began by accident. A friend gave me a box of charcoal sticks as a present, and to stave off panic attacks and keep me focused during long commutes on the London Underground, I started drawing in sketchbooks. I noticed how relaxed and focused it helped me be. It was during one of those trips I ran out of pages, so I picked up and graffitied a discarded copy of the Metro free newspaper that was on a seat beside me. I posted a photo of the drawing on Instagram, and it generated a lot of positive reactions. It’s a kind of graffiti recycling, drawing onto adverts or images in the newspapers and upcycling them.

Now, it’s a thing I do on newspapers, wherever I am in the world. I draw on planes, trains, and buses. This isn’t just some kind of art project for the sake of it. Whenever I am sedentary, skin picking is something my hands will do automatically, so to stop that from happening, I draw.

This has has taken me on adventures to the other side of the world, to the M1 Singapore Fringe Festival. My two-week trip in January 2017 was sponsored by British Council, and I created more than 300 free #CompulsiveCharcoal drawings, and gave a series of public talks on skin picking and art at National University of Singapore, Lasalle College of the Arts, and Khoo Teck Puat Hospital. A film about my trip by Channel News Asia was viewed by 150,000 in the first 24 hours.

[image error]

You’ve combined your artistic talent with spreading awareness of body-focused repetitive behaviors (BFRBs), but your advocacy isn’t limited to your artwork. What else have you done to draw more attention to these often misunderstood disorders?

Much of this has been a happy accident. I didn’t train as an artist; I certainly had no idea how transformative art was going to be in my life. Much of it has evolved organically through the act of doing it. Because of the transformative experiences I have had with art, it is now a fully connected part of my life. I teach art and drama to all ages. I work in hospitals, hospices, prisons, universities, and schools, approaching creativity as a hugely important tool to help others. Art is my greatest tool for recovery.

I had no idea what an incredible tool drawing would be to stop the CSP, but it’s become the greatest solution. Someone told me recently the drawings I create even look very itchy, which seemed like a very appropriate way to describe them! They are very quick. Each one takes just one minute; the speed and energy of the mark-making is absolutely akin to the skin picking. It helps me refocus my hands and fingers, be really present in the moment, and transform the urge of skin picking into a different repetitive action. Since I don’t really need the drawings (I just need to do them), I began handing them to curious passengers on the London Underground who’d caught my eye and obviously wondered why I was furiously drawing at that speed in the middle of a packed carriage. Acts of kindness and advocacy wherever I am.

I now speak out for mental illness, educating others and reducing stigma. Whenever I am asked, I try to say yes! That includes public talks, specialist commissions, residencies, and exhibitions. My story and art have been profiled in interviews for BBC Breakfast, BBC World Service Outlook, BBC Radio 4 Woman’s Hour, BBC Radio London, London Live, Al Jazeera TV, and BBC Arabic. Other media interviews include Huffington Post, Mashable, Metro, i Newspaper, The Mighty, The Daily Bruin Los Angeles, The Londonist, Bloomberg Business China, VICE Magazine UK, Diva Magazine, and Like-Minded Magazine, Amsterdam.

In 2016 I was announced as a World Health Innovation Ambassador. I was the keynote speaker at the 2016 Global Conference in USA for TLC Foundation for Skin Picking and Hair Pulling Disorders. My international advocacy includes a week in California in October 2015 speaking to junior doctors at Keck School of Medicine at University of Southern California, University of California: Santa Barbara, and to Skin Picking patients at The OCD Center of Los Angeles. In 2017 I took part in the M1 Singapore Fringe Festival: Art & Skin sponsored by British Council, delivering a series of lectures and art workshops at hospitals and universities, and creating more than 400 of my free #CompulsiveCharcoal drawings on public transport.

In the UK I have spoken on compulsive skin picking, art, and mental health for two TEDx events, Wellcome Collection, Critical Voices, Depression Alliance, Bethlem Gallery, Dragon Café/Mental Fight Club, Royal Society of Public Health, and Changing Minds at Southbank Centre. I was a speaker at the Global Conference for the Body Dysmorphia Foundation 2016 and Diversity Health Conference at University of Central Lancaster. [image error]

Do you have advice for someone who’d like to get into advocacy but isn’t sure how? 

For a long time I didn’t feel able to say my artwork was about skin picking. That all changed for me in 2013 when I was offered an exhibition at Bethlem Gallery at Bethlem Royal Hospital in the UK, which is one of the oldest psychiatric hospitals in the world. It was a moment where I felt able to tell the truth, and I found it very liberating. I have met many others who have also started to share their lived experience and I think it can really help people to connect with others and contribute to shifting change in how mental illness is perceived.

I realized that one encounter, one moment of identification with someone, whether that’s in real life or on social media like Twitter or Facebook, could cause a powerful ripple effect. It might prompt someone to seek help, get treatment, and start their own recovery journey. It also connects our experiences; I no longer feel alone in this disorder. I now speak out about this skin picking every day. It’s been a way to take back control of my life, but also I’ve found strength in being an advocate for well-being and mental health; it’s a way to share hope and recovery. Many people chat to me on the tube; little conversations about mental health happen with strangers about my graffiti drawings. I do up to 60 a day; in 2 years, I’ve given away up to 16,000 free drawings. That’s 16,000 mental health conversations and from that many thousands of people who may live with, or know someone who lives with, mental illness, or potentially CSP. Every drawing was a moment of connection, of advocacy for mental health, and a chance to let others know I am drawing because of CSP and I now carry free postcards to explain the disorder.

What do you consider the most common misconception people have about skin picking?

Many people think it’s just a bad habit, or something they ought to be able to just stop doing. The reality is many of us are hardwired with this genetically. Knowing that has helped with self-acceptance; it has helped me come to terms with it a lot. It’s not my fault, and not something I can just switch off or stop doing; skin picking movement patterns have been part of me for more than 30 years, so for me it has been about finding a way to change that, to rethink it, look after myself. Finding art, a personalized recovery tool, has been invaluable. It probably saved my life when I was at my lowest point with severe depression and chronic anxiety.

Many others think it’s a form of self-harm, which is a real misconception. These are disorders in their own right, with very different characteristics, and the intention often starts with wanting to smooth or perfect the skin, not to cause a wound.

It’s also worth saying 1 in 25 are thought to suffer from a Body Focussed Repetitive Behavior – these are common not strange, but many dismiss them as just a bad habit.

If you could share just one piece of advice with others who struggle with compulsive skin picking, what would it be?

Find your personal pattern—when do you pick, where, and how. For me bathroom routines and mirrors were tricky. So setting a timer to limit how long I’d be in the bathroom was useful. I knew it happened when sedentary or bored; I’d pick my fingers traveling on the train, and I’ve learned that keeping my skin moisturized does help me not scan for scabs or irregularities to pick at. And as it would happen when stressed or anxious, I feel I found a soothing activity—for me it’s drawing, which can occupy my hands, calm my mind, and engage my imagination. These have been hugely helpful. Finding activities with repetition seem to really work for me; the disorder functions through touch, gaze, and movement, so finding other activities to engage hands and motion are useful!

Giving back at just 17: Ryan Bernstein

[image error]Happy Tuesday! Today I’m hosting an incredible young man. At just 17 years old, Ryan Bernstein is shooting for the stars, working hard to spread awareness of obsessive-compulsive disorder. He’s writing a book, guys, and it isn’t even for personal gain! He plans to donate the proceeds to the International OCD Foundation, and he needs our help (you’ll see why!). Read his inspirational story of grappling with symptoms, getting a diagnosis, and getting better. Thanks for being here, Ryan!

Although you now know, at age 17, that you have OCD, it wasn’t so long ago that you felt anxious but didn’t know why. When were you diagnosed, and how did you realize what you were going through might be OCD? 

During my pre-teens I saw different doctors but they just chalked up my symptoms to becoming a teen. It took about 10 years to finally figure it out. I was recently diagnosed at age 15. It was really difficult to experience so much anxiety and not understand why for such a long period of time.

I was fortunate to go to a public high school that had some support systems in place, and when I was a freshman, I experienced a terrible panic attack. The social worker really helped me put a name to what I had been experiencing for so many years. I began seeing a therapist who specialized in OCD and anxiety and worked with him for about a year. I also did a lot of research on my own to learn more about OCD. The International OCD Foundation and their resources were invaluable for me.

Did your parents recognize any symptoms of OCD, or did it come as a surprise to them? How did you tell them what was going on?

My parents were very supportive but none of us knew why I was so anxious. It wasn’t until I started to develop more visible rituals that my mom thought it might be OCD.

I relied on my mom a lot and always shared with her what I was feeling. Sometimes it was really difficult to find the words, though, because everything felt so awful.

Once we had a diagnosis and learned more about OCD, the pieces fell into place. What my mom had seen as random acts, and what I had felt, now had a structure and made so much more sense.

Having OCD—especially undiagnosed OCD—can make a person feel alone. Did you talk to any friends about it? Do you have any advice for my readers who might not know how to broach the subject with their peers?

I felt very alone. I think that part of the problem with any mental illness is that you really look OK. In addition, there is a stigma associated with it so people tend to isolate. I thought I was the only person suffering with this problem.

Initially I did not seek out my friends. I was worried about how I would be perceived in my peer group. I wish I had opened up because it would have taken away some of the pressure I was feeling.

I remember having a bad anxiety attack one day at school and I just couldn’t get to class. I finally got up the courage to blurt out the words, “I’m really anxious right now.” To my surprise a few friends asked if they could help me.

After that experience I began to realize that I could ask for help. At first it was difficult. I still have a sheet titled, “Some Things that People with Anxiety want their Friends to Know.” It has really useful phrases that helped me communicate what I was feeling. I began to tell more of my friends about my anxiety and it felt good. I realized that by being more open it helped me feel less afraid. In doing so, I met others who were also struggling.

My advice is to not be afraid. Try to be as open and honest as you can with your friends. I know it is not easy. Find a time that works for both of you and have a one-on-one conversation with each of your friends. I found that if I asked for support my friends were happy to give it. Of course, there are those who will tease, and bully, and although I have experienced that, and it is not pleasant, I believe that closing yourself off from support is worse than taking a risk and being honest.

I have since started a support group at my school called “Hand in Hand.” We meet each week to discuss coping skills, and share our thoughts and feelings in a safe environment. It has been very well received, and I encourage other teens to start a support group if there isn’t one in the area.

[image error] What can teachers and school counselors do to help?

We are living in a time where diversity and disability is celebrated. I think that teachers and counselors need to learn more about OCD and respect that students are trying but it can be difficult for them. Avoid embarrassment. Be patient. Listen. Advocate for them.

Sometimes all students need is to feel accepted and understood even if it might not make sense. Expect some disorganization and forgetfulness- overwhelming anxiety can be distracting. Find the good and be compassionate.

What do you consider the biggest misconception about OCD, and how can we help shed light on it?

I think that the biggest misconception about OCD is that it is so narrowly defined as a hand washing, or perfectionist, or highly-organized-everything-in-its-place issue. I think that many people believe it’s not really an illness, that it can be controlled, and that it doesn’t really negatively affect a person’s life. I’m here to tell you emphatically that it does.

I think that the best thing that we can do as a community is to educate. Share your story to change the way people see OCD and by doing so you can inspire others to do the same. This is the very reason why I decided to write my book.

Tell us more about the book you’re writing,  OCD to Me: An Anthology of Anxieties. What inspired you to start this project?

I was inspired to write a book a few years ago when I was feeling really lost and alone. I didn’t think anyone understood what I was experiencing. It would have been so helpful and empowering for me to read about others who were also struggling. Too often books are written about overcoming an illness. I wanted to create a book that could not only help people with OCD but educate people about OCD through a first-hand account of what having OCD feels like.

I wanted to provide a platform for people’s unique stories to be heard. I know that often people don’t want to share their personal information so I came up with the idea of an anonymous survey. People can answer four questions about their experience. I will then edit responses for clarity and put them in the book.

Here’s the survey.

My goal is to get at least 100 responses. I am halfway there! I want to get as many stories as possible to show that there isn’t one face to OCD. It afflicts people from every possible walk of life. I want to show how diverse as well as debilitating OCD can be, then maybe we can change the image of OCD, and the belief that mental illness only affects certain kinds of people.

My book will contain three sections. “OCD Defined” written by an expert in the field, “Practical Advice,” and “Amazing Personal Stories.” I will then find a publisher who believes in this project and get the book published.

All proceeds from the sale of OCD to Me: An Anthology of Anxieties will be donated to the International OCD Foundation in order to help broaden awareness and provide support to the OCD community. I want people to know about OCD, and I want to let people know they are not alone.

I hope your readers will help me by taking the survey!

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

It’s possible to overcome OCD. Don’t give up! It takes a lot of time, energy, and determination but you can do it. I remember thinking that I would never get better but I am now and I think the key was not being afraid to try. It is very frightening to face your fears, counterintuitive in fact, but take micro-steps and celebrate any success. Of course there will be setbacks so don’t be afraid to ask for help. People can’t support what they don’t understand. Be willing to share, speak up, get the word out. Together we can educate our communities.

Tuesday Q&A: Ryan Bernstein

[image error]

Happy Tuesday! Today I’m hosting an incredible young man. At just 17 years old, Ryan Bernstein is shooting for the stars, working hard to spread awareness of obsessive-compulsive disorder. He’s writing a book, guys, and it isn’t even for personal gain! He plans to donate the proceeds to the International OCD Foundation, and he needs our help (you’ll see why!). Read his inspirational story of grappling with symptoms, getting a diagnosis, and getting better. Thanks for being here, Ryan!

Although you now know, at age 17, that you have OCD, it wasn’t so long ago that you felt anxious but didn’t know why. When were you diagnosed, and how did you realize what you were going through might be OCD? 

During my pre-teens I saw different doctors but they just chalked up my symptoms to becoming a teen. It took about 10 years to finally figure it out. I was recently diagnosed at age 15. It was really difficult to experience so much anxiety and not understand why for such a long period of time.

I was fortunate to go to a public high school that had some support systems in place, and when I was a freshman, I experienced a terrible panic attack. The social worker really helped me put a name to what I had been experiencing for so many years. I began seeing a therapist who specialized in OCD and anxiety and worked with him for about a year. I also did a lot of research on my own to learn more about OCD. The International OCD Foundation and their resources were invaluable for me.

Did your parents recognize any symptoms of OCD, or did it come as a surprise to them? How did you tell them what was going on?

My parents were very supportive but none of us knew why I was so anxious. It wasn’t until I started to develop more visible rituals that my mom thought it might be OCD.

I relied on my mom a lot and always shared with her what I was feeling. Sometimes it was really difficult to find the words, though, because everything felt so awful.

Once we had a diagnosis and learned more about OCD, the pieces fell into place. What my mom had seen as random acts, and what I had felt, now had a structure and made so much more sense.

Having OCD—especially undiagnosed OCD—can make a person feel alone. Did you talk to any friends about it? Do you have any advice for my readers who might not know how to broach the subject with their peers?

I felt very alone. I think that part of the problem with any mental illness is that you really look OK. In addition, there is a stigma associated with it so people tend to isolate. I thought I was the only person suffering with this problem.

Initially I did not seek out my friends. I was worried about how I would be perceived in my peer group. I wish I had opened up because it would have taken away some of the pressure I was feeling.

I remember having a bad anxiety attack one day at school and I just couldn’t get to class. I finally got up the courage to blurt out the words, “I’m really anxious right now.” To my surprise a few friends asked if they could help me.

After that experience I began to realize that I could ask for help. At first it was difficult. I still have a sheet titled, “Some Things that People with Anxiety want their Friends to Know.” It has really useful phrases that helped me communicate what I was feeling. I began to tell more of my friends about my anxiety and it felt good. I realized that by being more open it helped me feel less afraid. In doing so, I met others who were also struggling.

My advice is to not be afraid. Try to be as open and honest as you can with your friends. I know it is not easy. Find a time that works for both of you and have a one-on-one conversation with each of your friends. I found that if I asked for support my friends were happy to give it. Of course, there are those who will tease, and bully, and although I have experienced that, and it is not pleasant, I believe that closing yourself off from support is worse than taking a risk and being honest.

I have since started a support group at my school called “Hand in Hand.” We meet each week to discuss coping skills, and share our thoughts and feelings in a safe environment. It has been very well received, and I encourage other teens to start a support group if there isn’t one in the area.

[image error]

What can teachers and school counselors do to help?

We are living in a time where diversity and disability is celebrated. I think that teachers and counselors need to learn more about OCD and respect that students are trying but it can be difficult for them. Avoid embarrassment. Be patient. Listen. Advocate for them.

Sometimes all students need is to feel accepted and understood even if it might not make sense. Expect some disorganization and forgetfulness- overwhelming anxiety can be distracting. Find the good and be compassionate.

What do you consider the biggest misconception about OCD, and how can we help shed light on it?

I think that the biggest misconception about OCD is that it is so narrowly defined as a hand washing, or perfectionist, or highly-organized-everything-in-its-place issue. I think that many people believe it’s not really an illness, that it can be controlled, and that it doesn’t really negatively affect a person’s life. I’m here to tell you emphatically that it does.

I think that the best thing that we can do as a community is to educate. Share your story to change the way people see OCD and by doing so you can inspire others to do the same. This is the very reason why I decided to write my book.

Tell us more about the book you’re writing,  OCD to Me: An Anthology of Anxieties. What inspired you to start this project?

I was inspired to write a book a few years ago when I was feeling really lost and alone. I didn’t think anyone understood what I was experiencing. It would have been so helpful and empowering for me to read about others who were also struggling. Too often books are written about overcoming an illness. I wanted to create a book that could not only help people with OCD but educate people about OCD through a first-hand account of what having OCD feels like.

I wanted to provide a platform for people’s unique stories to be heard. I know that often people don’t want to share their personal information so I came up with the idea of an anonymous survey. People can answer four questions about their experience. I will then edit responses for clarity and put them in the book.

Here’s the survey.

My goal is to get at least 100 responses. I am halfway there! I want to get as many stories as possible to show that there isn’t one face to OCD. It afflicts people from every possible walk of life. I want to show how diverse as well as debilitating OCD can be, then maybe we can change the image of OCD, and the belief that mental illness only affects certain kinds of people.

My book will contain three sections. “OCD Defined” written by an expert in the field, “Practical Advice,” and “Amazing Personal Stories.” I will then find a publisher who believes in this project and get the book published.

All proceeds from the sale of OCD to Me: An Anthology of Anxieties will be donated to the International OCD Foundation in order to help broaden awareness and provide support to the OCD community. I want people to know about OCD, and I want to let people know they are not alone.

I hope your readers will help me by taking the survey!

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

It’s possible to overcome OCD. Don’t give up! It takes a lot of time, energy, and determination but you can do it. I remember thinking that I would never get better but I am now and I think the key was not being afraid to try. It is very frightening to face your fears, counterintuitive in fact, but take micro-steps and celebrate any success. Of course there will be setbacks so don’t be afraid to ask for help. People can’t support what they don’t understand. Be willing to share, speak up, get the word out. Together we can educate our communities.

Review of Turtles All the Way Down

[image error]Oh, boy. John Green’s Turtles All the Way Down was the first fiction book I’ve read about OCD, and it didn’t disappoint. It did, however, take me a month to finish—and not because it was too long or because the story dragged, but because it was a little painful to read such a perfectly rendered description of what it’s like to have unwanted thoughts on a loop. It was upsetting and triggering but beautiful, too.

Once it reached the climax about three-fourths through—as most climaxes do—I put the book down and couldn’t bring myself to pick it up for another two weeks. A co-worker who’d finished it told me it would all be okay, and that I had to finish it. Of course I did! Not only did I need to know what happened to our heroine Aza, I’d been planning on writing this review.

Just a note to all of you who are currently struggling or who relate to Aza’s contamination obsessions, you may not be ready for this book yet. However, you may find that you feel less alone because you can identify with the character. 

As I read I mentally noted a bazillion lines I wanted to write about here, but since Turtles All the Way Down is fiction, I want to make sure I don’t spoil anything! So I’ll keep it relatively light and say this: If you’ve ever felt like a burden to your friends, wished your parents would stop asking if you’re okay, thought you didn’t really need your medication, or had a hard time dating and getting intimate, this book will speak to you. Plus, it’s not all about OCD; there’s an intriguing mystery and some romance!

“But you give your thoughts too much power, Aza. Thoughts are only thoughts. They are not you. You do belong to yourself, even when your thoughts don’t.”

“But your thoughts are you. I think therefore I am, right?”

Those of us with OCD so often tell others how debilitating the disorder can be, trying to make people understand that it’s not a joke and that we don’t all love cleaning. John Green captures what it can mean to live with OCD, how your intrusive thoughts can eat away at you, threaten to destroy you—but somehow you get up the next morning and go about your day. Turtles All the Way Down could go a long way toward helping people understand that, yes, maybe someone with OCD can get out of bed, go to work, and keep one’s life in some semblance of order, but that doesn’t mean OCD shouldn’t be taken seriously.