Tuesday Q&A: Aneela Idnani

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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.

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.

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!

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.

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Review: Payton Is Afraid of Dirt

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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.

Tuesday Q&A: Liz Atkin

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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.

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.

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.

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. 

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: Ryan Bernstein

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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.

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

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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 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.

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.

Tuesday Q&A: Kate Stiffler

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Welcome Kate Stiffler! Kate, a mother of five kids, has found yoga to be tremendously helpful in dealing with her OCD. After years of struggling and mostly keeping her diagnosis to herself, Kate is ready to share her story. I couldn’t be more pleased to help her spread the word of hope and recovery. Thank you for being here, Kate!

When were you diagnosed with OCD, and how long did you have symptoms before that diagnosis? 

I was diagnosed with OCD in my 30s approximately 12 years after I started having recognizable symptoms of the disorder. Signs of OCD can be traced back to my early childhood where I do remember walking around saying to people “Everything is going to be OK.”

OCD is still misunderstood, and oftentimes people with OCD say they were surprised by their diagnosis because they thought it was all about excessive washing or checking, behaviors they never engaged in themselves. What made you think you might have OCD? 

I realized I had OCD when the obsessions/intrusions kept recurring over and over again no matter how much I tried to ignore or outthink them. I remember sitting in my bed crying in my pillow because they just did not make sense yet I could not stop them from entering my mind. The doubts, the “what if’s” they just intruded on every aspect of my life. The earlier years of my OCD were marked with clear compulsions such as washing my hands until they bled and taking showers that lasted for at least an hour. Over the years, the compulsions shifted to more internal neutralizing of the thoughts and checking behaviors.

Once you knew what was actually going on, did you tell loved ones right away? How did you decide who to tell, and how to tell them?

I really kept my OCD to myself for most of my early adulthood. My college years and graduate school years were years that I really did not know what was going on. I simply thought the OCD was a character flaw of mine and that I really was the terrible person the OCD made myself out to be. These years were marked with great sadness, confusion and isolation. It was not until years later that I sought formal help for my OCD. I entered many various forms of therapy from outpatient to inpatient at McLean. To this day there are only a few people who really know what is going on with my disorder, primarily my husband along with all the therapists I have encountered along the way.  

You own a yoga studio, and practicing yoga has been an important component in the recovery process. What is it about yoga that makes it so beneficial for our mental health in general, and OCD specifically?

Yoga saves lives. Yoga saved my life. I found yoga as a result of one of my earlier therapists recommending that I try it. I had  no idea what yoga was and had never taken a class before. After researching my city for yoga studios, I landed in a Hot Yoga class.  From the moment I stepped on the yoga mat my life changed. Yoga was a place I felt at peace. Yoga was a place I could go inside of myself. Yoga was a time I could reflect on my life and begin to declutter from useless garbage that kept me weighted down physically, emotionally, and spiritually. Yoga was a release for me. It allowed me to take time to myself to create space and just be. The daily practice of yoga allowed me evolve as a human being and begin to separate myself from my thoughts. As you know, with OCD this can be a huge help in the process of recovery. Yoga also taught me how to be more comfortable in the uncomfortable. It trained me to stay in situations and work through them rather than running away from them. These tools have been invaluable to me as a person living with OCD.

Katie, I can’t even touch my toes, so I feel anxious about taking a yoga class. How can I ease into it and experience the benefits?

Just show up! This is what I tell everyone who says the same thing. Yoga is not about looking perfect or even touching your toes. Yoga is SO much more than that! The first thing I would say to someone like you is just meet yourself where you are right now. Talk to qualified instructors and let them guide you into the class that would work best for you. There are many different kinds of yoga. Make sure you are educated on the different styles of yoga and what they entail and then choose which one resonates with your goals. Everyone can do yoga! That is the beautiful thing about it. There is something for everyone!

What else has helped you deal with OCD? Have you tried anything you wouldn’t do again, or something you were surprised to find therapeutic? 

I would say that connecting with others who have OCD has been most helpful for me. It wasn’t until fairly recently that I really started to understand that no one can do the work for you. It is up to you to be your own cheerleader and advocate. I have begun networking with other advocates in the OCD community to help spread awareness and share my story in hopes of helping others realize we are all in this together. Support and education are really important tools in getting the disorder under control. There is not really anything I wouldn’t do again. I have to say however that I do not like ERP. I found that it made my anxiety spike doing the exposures and I had a really hard time understanding the role of ERP. My brain could not understand for a really long time why I would want to do something that I am scared to death of. My brain wanted to run far away from the fears not towards them. I had a hard time separating the process with myself. In my mind, I felt like if I did the exposures it meant that I either wanted to really do the bad thing or I was the bad thing. I had a really hard time separating them. I wish I had been more educated on the ERP process from the get-go and taught that these things are very common misconceptions  that others also experience. I think if I was told this early on, it would have saved me a lot of time that I spent trying to figure it out on my own over the course of many more years. I have found writing to be very therapeutic for my OCD recovery. Sharing my thoughts with others, recognizing that I am not alone has been very meaningful for me.

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

You are going to be OK! Trust yourself. Love yourself. Be yourself. There is no one out there like you. Talk to other people who have OCD. You are not alone. OCD is manageable and you can live a very happy and successful life with OCD. There are going to be good days and not so good days. Don’t give up. Keep remembering its up to you what you want to do with your life. You can gain control over the OCD. Support and education go a very long way in recovery. Don’t be ashamed of yourself. Be proud of yourself and all  your efforts. Reach out to others like me and Alison who are here to help support you and cheer you on when you feel you cannot do it for yourself. You are a gift to this world. Never forget that you matter!

Tuesday Q&A: Nathalie Maragoni

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Happy Tuesday! Please help me welcome Nathalie Maragoni! Not only is Nathalie an amazing advocate working hard to spread awareness of OCD, she’s also in school so she can become an OCD therapist. This is such important work, and we all know how hard it can be to find a properly trained therapist, so thank you, Nathalie!

When she sent me the answers to my questions, she apologized for how long they are. She said, “My professors make fun of me for writing so much.” But look at these answers! See how well organized they are? And insightful? Nathalie, I know I’m giving you reassurance right now, but you’re just going to have to accept it this time.

Read on for Nathalie’s personal experience with OCD, her advice for teachers and parents, and her words of wisdom for those of us who struggle with OCD ourselves.

When were you diagnosed with OCD? How did you realize you needed help, and know where to turn? 

I was officially diagnosed when I was 11, but my parents first started to notice symptoms when I was just four years old. I learned about germs in preschool, and became terrified of them. My teacher told my mom that I was constantly asking if I could go wash my hands. That was the first sign that something seemed off. At six years old, I was holding my mom’s hand as we were crossing the street. All of a sudden, I wriggled free of my mom’s grasp, only to go all the way back across the street and re-cross it without stepping on any cracks or lines. My mom says I “walked in a serpentine pattern.” My mom, who suspected I had OCD, took me to a therapist. The therapist told her that it was likely that I did have OCD, but she didn’t want to put the diagnosis on me at such a young age.

Age 11 was what I call my “nightmare year.” I had no control of my thoughts. I was plagued with torturous thoughts every moment of every day. My own brain seemed to turn on itself. My hands were covered in bloody cracks from washing, washing, washing. I would do somersaults in the pool until I was dizzy. For some reason, I had to do 60 somersaults—no more, no less. Then, intrusive images of my mom dying flooded my mind. I remember sitting in class and getting hit with images of her being carried away in an ambulance; she was bloody and still. I remember panicking and doing rituals to try to “stop” the thought from coming true. I honestly believed that my mom’s life was dependent on my behaviors. If I got an intrusive thought, I had to do a certain ritual to “cancel it out.” I didn’t know why, but it felt necessary. It felt like my mom’s life was in my hands.

During that same year, I became terrified of my own saliva. I refused to swallow my spit, and would hold it in my mouth all day. I walked around school with my cheeks full of spit. It looked like I had just filled my mouth with liquid that I hadn’t yet swallowed, except I stayed like that all day. I couldn’t talk (because the spit would drip out). Sometimes, I would find a drinking fountain to spit in to. Eventually, when my mouth got too full, I started spitting into my clothes. I walked around with a saliva-soaked jacket. I didn’t believe I had a choice in the matter—I honestly thought that my saliva was contaminated.

Food was also “contaminated.” I used to spit out mouthfuls of chewed food in front of my friends. I didn’t have the energy to care what my peers thought of me. At 11 years old, I dropped down to 68 pounds. I looked so sick.

I also worried that everyone in the world would disappear except for me. I got the intrusive thought that everyone was a ghost, and I was the only real person alive. I worried about the number 8. The number 8 meant that I would become pregnant, so I was forbidden to “land” on the number 8 during rituals. I also developed a massive fear of becoming possessed.

This was all during my sixth grade year. I wasn’t learning anything. My teacher said I would just stare at the ceiling all day (she didn’t know that I was really counting the holes in the acoustic ceiling tiles). No one knew how to help me. My teachers didn’t know what to do with me. They didn’t understand what was going on.

Every morning, I would just cry. The thoughts would hit me like a ton of bricks right when I woke up. I would beg my mom to let me stay home. Going to school was exhausting and painful for me. Every task was hard. I felt like I was drowning. I remember lying in my bed one morning and saying, “Mom, I feel like I’m stuck in a nightmare and I can’t wake up.”

I had no idea that I needed help. I didn’t know that my mind worked differently than everyone else’s. I had experienced intrusive thoughts since age four—they were my “normal.” All I knew was that I had scary thoughts all the time, and I felt the need to do certain behaviors to keep those thoughts from coming true. Thankfully, my parents knew something was really wrong, and my mom started researching treatment for OCD. She found the OCD treatment center at UCLA. They had a long waiting list, so she agreed to put me in a research study at UCLA. I was diagnosed with OCD and was finally connected with an OCD specialist who treated my symptoms with exposure with response prevention (ERP).

You’ve written some clear, informative posts about OCD. One of my favorites is How to Help a Student with Obsessive-Compulsive Disorder, because it’s so important that all authority figures in a child’s life are well versed in the disorder. Do you have advice for parents on how to properly communicate their child’s needs to educators?

I think the biggest piece that is so often missing is education about OCD. As we know, OCD is highly stigmatized and portrayed as a funny, quirky disorder where things have to be neat, clean, and orderly. With this being the mindset of so many, it’s not surprising that the severity of OCD oftentimes goes unnoticed. Unfortunately, there are so many children in school who are suffering and aren’t receiving the proper support.

This being said, I think the best place for parents to start is by providing the educators with resources that will teach them about what OCD is and what OCD isn’t. I suggest that parents set up a meeting with their child’s teachers/principal. Explain what OCD is, explain the specific ways that it affects your child (i.e., is your child afraid of germs? How does their OCD specifically manifest itself at school?), and be very clear about what the school can do to best help your child best. If the educators simply know that your child has OCD, but they don’t know how or what they can do to help, not much is going to be accomplished, even when there are good intentions for change.

I suggest creating an “OCD cheat sheet/resource” page that consists of a few links to websites that provide solid education about OCD. I would specifically recommend providing the link to the Child Mind Institute’s article titled “Teacher’s Guide to OCD in the Classroom,” as it does a great job at clearly explaining common obsessions and behaviors seen in children with OCD, as well as giving practical advice regarding how to best help students with OCD in the classroom setting. Remember: you are your child’s biggest advocate. Educating your child’s teachers is key. We can’t expect change to happen when there is an absence of understanding in regards to OCD.

Imagine a person says, “I know I’m not supposed to offer reassurance to [my child, my friend, my student with OCD], but it’s so hard.” How would you respond?

First, I would try to normalize the desire to provide reassurance. As caring human beings, it’s absolutely normal to want to make our loved ones feel better. The tricky thing about providing reassurance is that it actually does provide temporary relief. When we see a loved one struggling, whether it is a child, friend, or student, and we know that we could say something to make them feel better, it’s absolutely normal to want to give that reassurance.

However, that’s where education about how OCD works comes in. In the long run, reassurance only serves to fuel the OCD cycle. Knowing and truly understanding this makes all the difference. It’s so normal for family and friends to feel helpless because they see their loved ones struggling with these intrusive thoughts and they don’t know how to fix it. Especially for parents, I can only imagine how strong the desire must be to take this struggle away from your child. But, as counterintuitive as it seems, withholding reassurance is actually what will make us better in the long run.

I am by no means suggesting that it’s a good idea to stop providing reassurance to someone with OCD cold turkey, because it’s not. It’s so important for family members to be as involved in the treatment process as possible. Together, with the help and guidance of an OCD specialist, a plan that the entire family agrees upon and is on board with can be developed. It’s important for everyone involved to be on the same page and agree upon a plan together. Don’t leave the person with OCD in the dark.

As someone who personally struggles with OCD, I can honestly tell you how thankful I am for the people in my life who resist giving me the reassurance I beg for, because they are ultimately the ones who are helping me in my journey toward recovery. To have family and friends who remind me that it’s OK to be uncomfortable and it’s ok to rush toward things that scare me is powerful.

What do you consider the biggest misconception about OCD?

Ah, there are so many! The biggest misconception that I’ve noticed is the myth that OCD is all about being clean and orderly. While OCD can take this form, there are so many other themes that don’t get nearly as much attention. Personally, I struggle with the more taboo topics, which are the sexual, violent, and blasphemous thoughts. These taboo themes are just as common as contamination OCD, but they are simply not talked about as much because it is so scary to speak up about these topics. That’s why it’s so important for our society to stop stigmatizing OCD. Just because someone likes their desk a certain way or enjoys organizing and being clean does not mean they have OCD. In fact, if they enjoy it, that’s a pretty good indication that it’s not OCD. Real OCD is not quirky or cute, and it’s definitely not enjoyable. It’s a very serious, debilitating disorder that is absolutely torturous.

Last month, during OCD Awareness Week, you hosted an educational event at your school. What was the feedback like? Did you get the feeling attendees learned something new about OCD?

Ah, that night was a dream and the feedback was incredibly humbling. I think the statement that I heard the most was “Wow, I learned so much.” Because the media so often trivializes OCD, the main focus of our event was to highlight the themes of OCD that oftentimes go unrecognized and to communicate just how debilitating this disorder actually is. You don’t often hear people talk about the fear of turning gay, the fear of being possessed, or the fear of killing yourself. I think the content of the discussion was what really grabbed people’s attention. Chrissie, Kerry, April and I wanted to specifically talk about the stuff that many individuals with OCD are struggling with, but are afraid to speak up about.

We also really emphasized the importance of treating OCD with ERP, which is something of which many people in the audience were unaware. The audience consisted of many people in the mental health field, and I think that talking about how important it is to treat OCD with ERP was a huge breakthrough for the audience. They got to learn that OCD really does require a specific treatment. Just because someone is a licensed therapist does not mean that they’re the best person to treat your OCD.

Overall, our goals were: (1) to raise awareness about OCD for the general public and for people in the mental health field, (2) to reach anyone who might be suffering in silence with OCD and to encourage them to get connected to the proper treatment, and (3) to remind everyone that there is hope and there is help available for OCD, and that it is absolutely possible to live a fully functioning life with OCD.

I think we accomplished all of those goals. It was so humbling to have the opportunity to be a part of an experience that advocated for mental health awareness. To know that my story and my suffering is not in vain—that it can be used as a means of helping other people feel less alone—was an absolute honor and privilege that left me feeling humbled and thankful. I can’t wait for future events!

Not only do you have OCD, you’re currently in school so you can one day treat OCD! How did you decide to make this your focus?

So, my symptoms started at age four. I struggled with these awful thoughts for seven years before my parents could finally find a therapist who treated OCD. They couldn’t find an OCD specialist within an hour and a half of our town. It was ridiculous! To this day, 13 years later, it is still so challenging to find effective treatment for OCD in my town. So, I decided that something needed to change, and I had the potential to be a small part of that change.

Once I received my diagnosis and I started understanding more about OCD, I realized that it was my passion to help other people who were similarly struggling. I have always been a great listener and a people-lover, so being a therapist seemed like the best job in the world. I made up my mind to be a therapist years ago, and it has always felt so right. I get excited every time I remember that this is what I get to do for a living.

It wasn’t until recently that I realized the depth of misunderstanding that surrounds OCD. There is such a lack of knowledge about OCD, even among licensed professionals, and it honestly terrifies me to my core. I realized that I wanted to specialize specifically in OCD and anxiety-related disorders. I’ve personally had a horrible experience with a therapist (who was not using ERP to treat my OCD—red flag #1), who actually suggested that one of my intrusive thoughts might be real. It wrecked me. It made me realize how much damage a therapist can do when they try to treat a disorder they don’t really understand, especially in regards to the sexual, violent, and blasphemous themes of OCD.

I want to be that safe place for people who are struggling, and I want to be able to help spread awareness about OCD to other professionals in the mental health field. It takes an average of 9 years for an individual to be diagnosed with OCD. That’s a ridiculous amount of time to go undiagnosed with such a tormenting disorder. To be able to be a mental health professional who can advocate for treating and diagnosing OCD properly would be so fulfilling. I’m going to have the best job in the world.

What advice do you have for someone who doesn’t live near a qualified therapist, or who can’t afford treatment?

That’s a great question! Unfortunately, therapists who are qualified to treat OCD can be hard to find. I would absolutely suggest Skype therapy. Nowadays, there are multiple therapists who are willing to provide treatment across state and country lines. I personally live in California, and my therapist lives in New York. I Skype her once a week from the comfort of my bedroom, and it’s just as effective. I don’t have to travel, I pay the same amount, and I’m getting the correct treatment for my OCD. Check out this great resource for ERP via Skype. If you need help finding a qualified therapist in your area in general, I would recommend contacting Chrissie Hodges for referrals and resources.

Not being able to afford effective treatment is a whole other struggle, and it’s a pretty common one, at that! What I would first suggest is to view your OCD for what it is—a medical disorder that deserves treatment. Getting treatment for your OCD is just as important as treating cancer or diabetes. When finances are tight, I think that a lot of people put their mental health on the back burner. It’s really easy to feel guilty about spending money on therapy when you’re barely able to pay your bills that month.

But, I would challenge you to try to think about your mental health in a different light. OCD is a medical condition that is just as serious as any other physical illness, and it should be treated as such. It shouldn’t be something that is pushed to the back burner.

Your mental health has the potential to affect every other aspect of your life—your relationships, your friendships, your life as a spouse or a parent, etc. When your mental health suffers, everything else can, too. If you had a thyroid disorder, would you make paying for the medication that you need to regulate your hormones your last priority? No. Because your thyroid is a medical issue that deserves the proper treatment. Your brain is no different.

That being said, I also understand that there are many individuals for whom therapy isn’t an option (for a variety of reasons). If this is the case, there are so many great self-help books out there for OCD—I’ve linked a few!

Books for parents of a child with OCD:

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

Find a few other people who have OCD to support you along your journey. OCD can feel so isolating and lonely, so it’s important to make sure you have support. Whether it is through peer support, an OCD support group in your city, or an online support group, it’s so valuable to have a few people in your life who simply get you and get how your mind works. It’s especially helpful to find people who struggle with your same OCD theme. You can have the most supportive family and friends in the world, and they can be so intentional about educating themselves about OCD (and that’s wonderful if you have that support), but there’s just something about having those few close friends who also have OCD. There is so much power and freedom in not having to explain how your mind works. Get connected to those people who, when you’re struggling, can look at you and simply say, “Me, too. I get it. I’ve been there. You are not alone. There is hope.” Having that support makes all the difference in the world.

#ocdweek with Chrissie Hodges

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Happy OCD Awareness Week! As you may know, I’m the president of OCD Twin Cities, the local affiliate of the International OCD Foundation (IOCDF), and I’m excited to host Chrissie Hodges this Thursday! If you’re in the area, I hope you’ll join us from 7 to 9 at the Wilder Center, Auditorium A, 451 Lexington Parkway North, St. Paul, MN 55104.

Chrissie is an incredible advocate for OCD awareness. She often speaks at conferences, to law enforcement, and to lawmakers, appears in live videos for Mental Health on The Mighty, and hosts a YouTube channel, Chrissie Hodges/Pure OCD Advocate.

You received the 2017 International OCD Foundation Hero Award. How did that make you feel? 

It was a great honor to receive the hero award, especially following in the footsteps of a couple of my favorite advocates! I think it made me feel more encouraged, not only in my own advocacy, but in encouraging others to pursue their own and find ways of telling and expressing their lived experience. It was a weird feeling, kind of like the impostor syndrome. I don’t feel like my story of survival and recovery or even my ability to talk about it so openly is heroic…I feel like the people I connect with every day in my work who are actively working toward the courage to get better and face this beast of an illness are my true heroes, and they are the reason I find the courage every day to keep speaking out. Anyone who lives with OCD and survives each day with it is a hero in their own right!

Your memoir, Pure OCD: The Invisible Side of Obsessive-Compulsive Disorder, came out this past year. Why did you write it? What do you hope people will get from it?

I originally wrote is as a tool for myself to read during relapses to remind myself that I really do have OCD. I struggle terribly with the “what if I don’t really have OCD and my obsessions are real” fear, so I thought if I could read about my history with it, it could be a good reminder and motivator in remembering that therapy works and things will get better. When I decided to publish it as a memoir, I hoped that people could use what I had been through to normalize their experience and feel less alone.

People love your live videos! How do you choose the topics? Has there been one video or subject that’s been particularly difficult to talk about?

Thank you! I usually choose topics based on what I have and what my clients are suffering with. The journey to recovery is so complex with OCD, it really isn’t just about therapy then recovery. It’s so emotionally difficult, so I try to do videos based on what I see as common obstacles for my clients. At first the difficult videos were the topics that are so taboo and the lesser known physical symptoms like groin movement and urges. But after being so open over and over and getting so much positive feedback, it has been so much easier to just be absolutely transparent without reservation.

You’ve shed a lot of light on sexual intrusive thoughts and helped people feel less ashamed of them. Tell us why you’re known as “Groinal Girl” among the OCD community.

Haha! It was at the IOCDF conference in Chicago sitting on a panel with you when I decided to open up publicly about how one of my most tormenting symptoms is when I get “the groinal syndrome,” which is a compulsion of checking and rechecking the groin area for movement or “arousal” when exposed to a sexual intrusive thought. I was so nervous, but the reaction was overwhelming and helped individuals who experience it feel less alone. I did a video on it shortly after and it is highly successful and has been watched more than almost any of my other videos! I think I self-proclaimed the #groinalgirl title!

“Groinal Girl” isn’t the only title you have. You’re a certified peer specialist. Tell us what that means.

I fell into peer support shortly after I began my advocacy career. I was helping people with their journey through OCD and realized that I needed formal training to learn to support people and not contribute to their symptoms! I went through intense training here in Colorado and worked full-time with individuals in the community as well as on the teams at the Colorado State Institution at Fort Logan with individuals with major mental illness and substance use disorders. I loved it. Simultaneously, I was working alongside Matt Myles, OCD specialist here in Denver, as an ERP coach and peer support under his supervision.

I saw the need for peer support in OCD treatment and recovery and in 2016 I launched my business doing peer support and consultations for OCD therapist referrals and resources worldwide. Through peer support, I meet with individuals to help support and normalize their experience by using my own lived experience. It has been wildly successful and I work with individuals with sessions one-time, ongoing, or as needed in any stage of treatment before or after. I also work with OCD therapists to coach individuals through exposures by enforcing their hierarchy plan. Both are incredibly beneficial in instilling hope and support to the client as they work toward recovery.

What can attendees of the OCD Twin Cities OCD Awareness Week event expect? 

I’m hoping to share my lived experience and story of not only my medical recovery, but my emotional recovery, which was equally as tough to work through. I’m hoping people will walk away feeling a sense of belonging to a community where we don’t have to feel shame, guilt, or embarrassment on what we’ve been through.

Tuesday Q&A: Solome Tibebu

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Solome TibebuA few years ago, when my book Being Me with OCD was just coming out, my brother sent me a link to a local TED Talk. I could see why: The speaker, Solome Tibebu, bravely opened up about her personal experiences with obsessive-compulsive disorder (OCD) and anxiety. But that wasn’t all—she also shared how, at age 16, she founded a nonprofit called Anxiety in Teens! Since then I’ve had the pleasure of meeting Solome in person at the OCD conferences, and I’m honored to host her today. She’s taking the world by storm!

I gotta say, when I was 16 I definitely struggled with anxiety and undiagnosed OCD, but for the most part my mind was on getting boys to like me and trying to fit in at school. You founded a nonprofit, Anxiety in Teens! How did this all come about?

My mind was definitely on those things, too! But, after the OCD continued to exasperate me, I found power and relief in going to my local Barnes & Noble or searching the web for any information about anxiety that I could. One of my later therapists explained to me that what I was seeking and gaining from this research was called psycho-education, and each epiphany I had about what was going on in my mind and body was called cognitive restructuring. They sounded like really big words but I loved the sound of it—I figured out early on that these breakthroughs were one of the most powerful aspects of managing my OCD and anxiety. As I started collecting these resources and turning to them time and again, I often thought about how access to this type of information was so critical to help me through my time of need.

There weren’t as many resources aimed at young adults dealing with mental health issues as I would have thought or liked at the time. I was accustomed to reading online magazines aimed young women yet also reading stuffier, less-personal clinical sites about anxiety disorders. Of the few personal blogs I found online that were focused on OCD and anxiety, I found their anecdotes eye-opening and comforting. I thought, wouldn’t it be nice if there was a place that could offer all of these things!

I tried various platforms to get started. I had my cousin help me set up a very basic blog, I think I recall Yahoo! business pages as one of my early iterations. Over the years, I would learn a little more about OCD, improve the website a little more, and learn more about starting up an organization. Later, in college, I wanted to continue improving the design of the site but had little resources. I googled, “Minneapolis web design,” and clicked on the first listing of the search results. Turned out to be an agency that was just a mile from my college. I cold called the CEO of Rocket55, Steven Ayres, and asked if he’d help me with my website in exchange for interning for him for free. We met in person that afternoon and he agreed (he later hired me, and they did, in fact, greatly improve the site!). The Minneapolis community was wonderful in terms of their willingness to help young people get their ideas off the ground, including resources like Ashoka YouthVenture, the local startup community such as Project Skyway, and the resources at my university, University of St. Thomas.

You have OCD yourself. When did you realize you had it, and how long did it take to get the proper diagnosis after you first started experiencing symptoms?

Somewhere around sixth or seventh grade it became evident that I was developing OCD, along with some significant anxiety problems (panic attacks, etc). It started out with what appeared to be separation anxiety, where I never allowed a family member out of sight without a serious panic attack. As I started to address the panic attacks, the OCD really started to take hold. I saw a couple therapists for a year or two at a time without seemingly much help. My family and I continued with these therapists because honestly, we didn’t know if there was anything better! The same could be true of medications. It wasn’t until the fourth try that I finally found someone effective, which gave me a better perspective to see that those initial sessions were not very helpful. Now, I would recommend seeking out an OCD specialist from the onset.

In 2012 you gave a local TED Talk. How did you go from dealing with daily anxiety to standing in front of an auditorium full of people to share personal details about your life?

Surprisingly, the public speaking wasn’t an issue. I was just so excited to tell my story and finally articulate what actually worked for me. I worked hard to condense what I had learned over the course of my teens and express these insights as clearly as I could in under 15 minutes. I was motivated to offer information to those in the audience about how they could be effective allies. At the same time, I also understood the responsibility of articulating OCD as best as I could for those in the audience who were not familiar with OCD. There is so much misinformation about OCD, with the media constantly characterizing individuals as cleaning cartoons. My hope was that they could hear one person’s story and, while we may come from completely different walks of life, perhaps they could relate to me on some level even if they wouldn’t be able to 100% understand OCD. From there, they could be empowered to address their own OCD or assist someone else more effectively, with compassion and better understanding.

In that TED Talk, you said you were worried, as a seventh-grader, that you might be pregnant if you didn’t eat the “right” number of M&Ms. Of course we know that there’s no biological connection between the two, so how did you explain these fears to others?

I didn’t. It was just so impossible trying to articulate what I the experience was like and attempting to get others to understand. If I could even get myself to share such an awkward topic, others would be quick to respond with, “What? That is literally crazy. You know it’s not true, just move on!” As I’m sure you know, the experience of trying to explain OCD and the odd contents of it to other people is just so exhausting that I wouldn’t even bother. Unfortunately, that means suffering can continue in silence.

And how did you tell friends and family about your diagnoses? What advice do you have for teens who want to tell people they have OCD but are worried about being judged or misunderstood?

With the sometimes extreme anxiety and OCD symptoms I displayed, it was hard to hide from my family. They knew about many of the contents of my anxiety—such as the separation anxiety—but other topics, not so much. To some extent, I kept it a secret so I could control certain aspects of my environment—I knew they were highly invested in my well-being and it seemed to me they would often get overwhelmed when we discussed or addressed my anxiety, so at the time I felt it better to lay low. But for the most part, I knew I couldn’t barely explain my OCD if I wanted to! As the first American-born in my family and parents both coming from very different backgrounds themselves, there was the additional complexity of cultural barriers such as high stigma and lack of even a word for OCD in their languages. Fortunately, although I didn’t talk much about my anxiety or OCD, they were committed to taking me to get as much help as I needed.

If you’re a teen and you are concerned about sharing your OCD, I would recommend starting with discussing it only with whom you’re comfortable and when you’re comfortable doing it. At first, this may just be your therapist. No one is forcing you or rushing you to share the details of your health and healthcare, and I believe pacing your self-disclosure on your own time is best. Your first priority should be your well-being, and if that means getting your feet on the ground and just discussing it with your therapist to building a strong foundation, then so be it. Later, as you develop the right skills and find what really helps you, you may be inclined to share it with others. Starting with meeting other individuals with OCD (such as at the International OCD Foundation [IOCDF] conference) may be an easier first step, because you know right away they can relate and offer a strong support system.AiT Logo

More than a decade after launching, Anxiety in Teens is still going strong. How has it evolved over the years? And what are you up to now–other than moving away from the best city in the world, Minneapolis, to ho-hum New York City?

While I do miss the five days that is summer in Minnesota, New York City has been great! Since Minneapolis, I’ve had the opportunity to work with tech startups and later for the largest mental health EHR software company. More recently, I am going back to startup life as I pack my bags for San Francisco next month to help advance healthcare quality at a new startup.

Anxiety in Teens has definitely evolved and I look forward to it continuing to do so. The process of writing and expressing my story, researching evidence-based strategies and summarizing the psycho-education once I had put it in practice in my life had been a very therapeutic process in and of itself for me. Later, along with the University of St. Thomas, we developed our own Learning Through Service programs for other young adults to gain a similar experience while learning the ins and outs of a 501c3 nonprofit. Each semester, I continue this program, and each season we evolve it more a little bit each time. There have been over 200+ young adults who have struggled with mental health issues participate in our Learning Through Service program. Here is an example of the experience.

In addition, we do live events! Our most recent OutRun Anxiety 5K Walk/Run for Teen Mental Health took place in Tucson, but we got our start in Minneapolis. In conjunction with our nationwide Contributor program, I have the honor of speaking on campuses and associations about mental health and social entrepreneurship. Finally, I am pleased to be making a difference at the IOCDF, where I sit on the Diversity Committee and assist with web/marketing activities.

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

My advice for others struggling with OCD would be to stay mindful and regular with evidence-based techniques on an ongoing basis, such as exposure and response prevention. While not easy, these treatments work. In addition to reducing the OCD in the moment, staying abreast of these tactics and remembering to them even at a maintenance level can help you avoid OCD down the road in the event that you face stressful perfect storms down the road. As others on this site have recommended, I also suggest getting involved with the IOCDF. It is rare to find such a robust community of others with OCD in one place, and their resources are second to none.

Tuesday Q&A: Mike Michel

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Please welcome Twin Cities musician Mike Michel! Mike has had obsessive-compulsive disorder (OCD) since childhood, but another chronic condition, tinnitus, reared its ugly head a few years ago and turned his life upside down. Suddenly everything he loved—not to mention his livelihood—brought him pain and frustration. He didn’t give up, though, and he’ll tell you all about the journey himself. (The twist is that obsessive Googling eventually led Mike to the right help, but I know you won’t take that as justification, right?) Thanks for sharing your story, Mike!

When you were diagnosed with tinnitus in 2013 you took a hiatus from your career in music. After years of seeking treatment and finally getting some relief, you recently released your latest album, On The Mend. Can you tell us more about the album and how you were able to complete it?

On The Mend is a new recording and music campaign dedicated to raising awareness for invisible brain conditions. On The Mend is my first acoustic recording and draws upon afro-cuban grooves, positive messages of resiliency, and creating memorable melody. It was written during the midst of me being diagnosed with severe tinnitus (auditory cortex malfunction) and hyperacusis (extreme sound sensitivity). Both conditions were exacerbated by intense rumination from chronic OCD issues. Despite living with conditions where there are officially “no cures” I wanted the record to be upbeat and hopefully a healing tool for others.

After 20-plus years of being a professional musician, I made the decision to stop recording, writing, and performing music when these conditions were at their worst. I’m a music educator as well and I also cut my teaching duties by 70 percent. Since music and the arts is all I know, all I’ve ever trained for, and my highest life-skill set, I was traumatized and fell into a deep depression. My situation was unique as I was dealing with some genetic pre-disposition to these conditions (brain gating), a sphenoid compression (old head injury), and other variables. Musicians focus on developing their auditory cortex over many years, so it makes sense we’re more sensitive to sound over time as we are “always listening” for a pin to drop.

I reflected daily if this was a sign that I was supposed to move on from the arts. I looked into going back to school, volunteered at a mental health treatment center for seniors at a local hospital, and sought counseling and spiritual advice. Needless to say, nothing gave me more of a sense of purpose than my music, so I made the challenging decision to somehow get back into my craft in any way, shape, or form.

My OCD did come in handy, as I was a vigilant researcher of my conditions (insert smiley face). After a year of Googling, I came upon two people who had severe tinnitus and hyperacusis and they wrote books on how to heal yourself. That gave me hope and energized my will to carry on, so I pulled out an old classical guitar that belonged to my sister. Classical guitars have soft strings. Miraculously, strumming that instrument without ear plugs didn’t spike my tinnitus. At this point I sold a lot of my electric music gear, and the sight of an amplifier made me sick to my stomach. It pained me that I couldn’t plug in. After a few minutes strumming the old classical guitar, I realized my depression was due to the fact that I had no sense of purpose. I started to write some killer melodies on the guitar and lyrics, messages, and good stuff flowed pretty effortlessly. I started to get the higher life lessons involved with illness, why I received my conditions, and what I had to do to overcome this. I was lucky, as I wanted to live. Some people with severe cases of tinnitus and hyperacusis literally check out or go insane. Invisible conditions based in the brain are tough, right? We just don’t know a ton about the brain yet, so that adds another layer of stress on really not knowing the complete picture of what you have.

God bless LinkedIn. Really! My old friend Adam Wahlberg owns a Minnesota-based publishing company called Think Piece. Think Piece puts out books and music that deal with mental health, wellness, and resiliency. I saw one of his posts about his collaboration with Adam Levy and together they were releasing a record called Naubinway. I reconnected online with Adam to say hello and we decided to have lunch and talk about old times and mental health. I told him my story about leaving music due to my conditions but that I was finding a new sense of purpose writing these little tunes on this old guitar. After that lunch we decided that in due time it would be cool to collaborate on a music project together and release these tunes. I called the collection of songs “On The Mend.” I was broke, very vulnerable, and isolating myself since I couldn’t go see live music anymore but really wanted to somehow mold this music into a record. I didn’t know how I would physically record On The Mend as my fear of sound was increasing, but I knew intuitively I was supposed to.

I decided to start a GoFundMe, and it was really scary asking for money. Not a habit of mine. I reached to students, friends, and family and raised enough money to pay for a recording and hire great musicians and engineers to help me complete the process. I was completely overwhelmed by people’s generosity. I truly did not expect to raise much. With the help of this miraculous event and wonderful people I wanted to fulfill one of my objectives and work with producer/engineer Jason Orris at The Terrarium. Outside of being a great friend and talented musician, Jason has also dealt with tinnitus and won. He’s really got a grip on it and has gone on to make lots of music in the last two decades. His energy and compassion are what I needed to see this record through. I had good days and bad and I limited my time in the studio. Recording with ear plugs was maddening and challenging. I could barely hear a thing during the recording process. Sound travels through bone (skull) and some days I would drive home with immense facial pain. I needed to go through that process and build my confidence back up. I had to teach myself how to sing again as it had been seven years since I’d sung a tune in a recording studio. That was a trip, but I was a disciplined artist for the first time in my life and I truly thank these conditions for rerouting me and getting me back on my new path as a songwriter and an activist.

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Having OCD myself, many lyrics in On The Mend spoke to me. Some snippets: Rumination leads to destruction. You look for reasons, you look for safety. Liberation comes with patience. Your pain is invisible…real as an open wound. Are any of the songs specifically about OCD, or was the whole album a reflection on chronic invisible illness in general?

Both. I was trying to make the connection on songs like “Full Of Positives” that mind and body are connected. This is not a new revelation to most, but for me I realized that 20–30 years of being nervous person, having intermittent sleep, and always thinking the worst can lead to illness. I was a workaholic and not hardwired to deal with it. I always thought I was type A, but I was wrong. I’m in the process of learning how to live life in a new way. My therapist calls it my lower gear. I’m prone with OCD and, with that, I always get things finished in a complete manner in a short amount of time. I’m always against the clock and having one task unattended to used to keep me up at night. I’m still working on this concept of “letting go.” I’m learning new mindfulness skills with my therapist and it’s becoming a part of my life, which makes me feel so relieved! On paper mindfulness looks easy, but for my personality type it’s like climbing Mount Everest.

How long have you had OCD, and when did you realize that what you’d been going through was OCD? Can you share some of your symptoms and the techniques you’ve employed to combat them?

My first signs of OCD were around the age of 11. I keep getting vertigo in my big old Catholic church in Cincinnati where I grew up. I went to my pediatrician and he diagnosed me with vertigo, but we never got to the source or triggers. It was in the early ’80s and the awareness levels for mental health just weren’t that deep. Vertigo led to heart palpitations, panic attacks, and two seizures that I never told anyone about till this article. My intense rumination was wreaking havoc on my body. I thought about death and dying almost every day for 20 years. An 11-year-old kid shouldn’t be thinking of dying every day. I have my traditional moments of checking the stove burner three times, scratching my head all night, grinding my teeth all day, and being manic about to-do lists. To date, I’m happy to report that I’ve cut the severity of most of my symptoms by 50 percent. Since I haven’t been working as much in the last three years I applied for MinnesotaCare (a blessing beyond measure). My main priority in the last three years has been working on my physical, emotional, and spiritual self. To me there is no separation between them. Our brains are made of neurons, chemicals, and electromagnetic energy. Mindfulness, soothing supplements, non-ototoxic anti-anxiety medication, and amygdala training have been key to my current recovery. I look at this as a lifelong journey, and de-stressing my life is my top priority each day. It’s very challenging in a modern world to do this, but I do try each day to live moment by moment and not five years ahead anymore.

Neither OCD nor tinnitus is an illness others can see, but tinnitus is perhaps more socially acceptable. How did you tell family, friends, and coworkers about each diagnosis? Did you notice a difference in how people seemed to receive the news?

Here’s the miracle here. I was highly concerned that people in my life would be uncomfortable around me if I told them about my struggles. My GoFundMe was my coming-out party. I just laid it on the line, the darkness, the history, the tinnitus, hyperacusis, depression, and OCD. I realized it wasn’t about me; it was about making a record to help others. So I took my ego out of it finally and said fuck it, I might lose a lot of friends. The opposite happened and I can’t even explain how incredible that felt. I was totally supported in ways that I have never experienced. It was overwhelming to receive that amount of love. Another lesson for me was about the art of receiving, but with humility, grace, and acceptance. I grew immensely from the GoFundMe experience.

Say a fan approaches you and says, “My chronic illness has a profound effect on my life, but people tend to downplay it because they can’t see it. How can I help them understand what I’m going through?”

This is tough again as someone with illness has the right to vent. Any illness is confusing, stressful, and exhausting. But if you become your illness it will stay on board. I found myself wanting to educate everyone about tinnitus and hyperacusis for a while but I realized it has to be in small doses. First, out of respect to myself and not becoming my illness, and second, not cramming information down people’s throats. I believe in a healthy balance of education and empowerment. The reality is that until someone has gone through a major illness they really are not going to get where you are and may not care that much. We hear this quote a lot from people going through a health crisis: “I want my life back.” That sits so deep with me. To me that means I want to do normal stuff like work in the yard, go to a movie, get groceries, go see a friend, or have coffee with someone. When you have chronic illness all of the daily things you take for granted are gone and the smallest things are struggles. Hopefully not forever. So, I’ve discovered having a lighter delivery describing my conditions along with a calm demeanor works best. Touches of humor help, too. The preachy thing doesn’t work.

Finding people who are going through similar situations was a priority for me. Every illness has different levels. I have at least 100 people in my life that I’ve met with tinnitus. Since the launching of On The Mend, I have received dozens of emails from people all around the world asking about tinnitus management tools. That’s a tricky one, as thinking about tinnitus all the time is a not a healthy move, as it brings your awareness back to your internal sounds and intensifies them. To deal with this predicament, my OCD came in handy and I wrote an eight-page tinnitus/hyperacusis management manual for musicians. Now I can simply send a compassionate PDF via email and get back to my day. I would like to restate that I’m a work in progress and my tinnitus manual is simply a collection of positive data and resources that can point you to the fabulous practitioners who understand these conditions best. Most tinnitus cases are mild. Statistics show that 50 million Americans have some form of mild tinnitus. Three to five million have severe cases like mine. The difference between mild and severe tinnitus/hyperacusis is immense. The latter is debilitating.

So heading back to your original question, there have been many moments during my wellness journey where I’ve been approached by people with mild tinnitus and they say “I just tune out my tinnitus and forget about it, why can’t you?” Judgmental tones like this are the truest test of one’s ego and are a fabulous moment to educate people about compassion, awareness, and empathy. The “you’re weak” look gets old, too. My biggest recommendation is learning to let go of these judgments and formulate a standardized rebuttal that leads to a respectful educational moment for your agitator.

You noted in an interview with The Current that while having OCD meant you ruminated on the tinnitus, making it even more unbearable, it also pushed you to seek help. You said, “The good thing about OCDand there is a good thingis that you generally are a very thorough personality and you’re very proactive.” What steps did you take to balance tinnitus, OCD, and depression?

I’m still working on all the above. I’m a work in progress for sure, but from day one I knew I was not going to accept the general medical community’s belief that there was nothing I could do and just live with it. I spent hundreds of hours researching. Google forums can be destructive, and I had many dark setbacks researching. Tinnitus and hyperacusis generally have dismal articles written about them because they are brain conditions that are completely unknown to most neurologists. It’s a doom and gloom subject for sure. Nobody wants to talk about hearing intrusive noises in your head. OCD did assist my attitude of never giving up. I was lucky in the fact that even through these most challenging times, including severe depression, I had a small spark to carry on and make this a mystical health journey to fulfill higher life lessons and to evolve as a person. OCD helped me be a bad-ass researcher. I finally found the needle in the haystack and found a dozen practitioners who have helped me over the course of three and a half years.

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

You can talk to yourself all day, go to a million therapy appointments to vent and process, but action is needed to manage these conditions. Rewiring the brain is what is really going on. I’m hardly a brain expert, but seeing a therapist and hypnotist taught me about the power of the subconscious mind. Taking physical action, rerouting the energy, and raising your awareness levels take work. Finding your triggers takes time. It’s deep, the deepest part of your being. Rewiring a brain that’s been acting the same way, say like mine for 30 years, can’t be done in six months. My OCD would like to think so, but doing little exercises each day in a healthy way adds up. Thanks for letting me tell my story! Here’s to a healthy mind!