Category Archives: OCD

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.

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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!

Tuesday Q&A: Michele Carroll

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MicheleHeadShotMeet the lovely Michele Carroll! Some of you may be thinking, “Wait, I think I have met her” because you’ve talked with her or seen her at some of the annual International OCD Foundation (IOCDF) conferences. As you’ll soon hear from Michele herself, she’s had OCD for yearsbut she’s only recently begun opening up about it more and sharing her experience with people beyond her close friends and family members. Let’s give her a very warm welcome!

How long have you had OCD? Many people—including myself—say it took years and years to be diagnosed, and it can take years to get the proper treatment as well.  What was your experience like?

I began experiencing OCD symptoms at age 10, but it didn’t develop into full-blown OCD until I had my daughter, 19 years later. Currently, I’ve had OCD for 18 years; it took me 13 years to get treatment.

The first symptom of OCD that I recall occurred when I was in fifth grade. At that time, I rewrote my social studies notebook from beginning to end because I thought it wasn’t neat enough and because I feared failing the exam. Looking back, this didn’t make much sense because I was a straight A student, so it would have been very unlikely for me to fail, even if I didn’t rewrite my notebook. In high school, I began to experience taboo intrusive thoughts, although I didn’t know it was OCD at the time. These thoughts started as scrupulous and blasphemous in nature and changed through the years to other taboo topics. No matter the topic, I was terrified of the thoughts because of what they could mean about me. I would engage in compulsions including praying a certain set of prayers in a certain order, doing the sign of the cross correctly to ensure my prayers were “going to God” and not the devil, seeking reassurance from others, questioning the meaning of the thoughts, analyzing them, trying to figure them out, and researching them on the internet. After I engaged in what I later learned were compulsions, my fear would temporarily decrease. The problem is that the cycle would start all over again, resulting in me engaging in the very same compulsions.

Years passed with this struggle. I eventually serendipitously saw a television program that was about postpartum OCD. On the show, the moderator said that doctors were prescribing antidepressants for this problem. Since this sounded a lot like what I was experiencing, I decided to tell my doctor that I was feeling depressed (so that he would prescribe an SSRI). I figured if I said that, I’d get the medicine without having to speak about the scary thoughts I’d been having. I thought I would get better, and the thoughts would go away.

Of course, avoiding talking about the thoughts, trying to suppress them, and engaging in compulsions didn’t make them stop. Eventually, five years ago, when seeing a psychiatrist who was not an OCD specialist, I finally worked up the courage to speak about the thoughts I’d been having. Regretfully, my doctor didn’t seem to understand, and he shared that he didn’t think I had OCD “because you don’t have any compulsions.” By then, I had read about taboo intrusive thoughts and mental compulsions online. I wanted to get help and get better, and I learned about the IOCDF. Through this group, I got connected with an OCD therapist who did exposure and response prevention (ERP). My recovery journey had begun!

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Once you did realize it was OCD, how did you tell your loved ones?

I have told my loved ones about my OCD gradually and on an individual basis. I first told my husband who had been experiencing these issues with me all along. Next, I told two friends who are psychologists because I felt they could “handle” the information. Since I have what has been coined “pure O,” I referred them to the IOCDF website for more information if they had any questions. Some time went by until I then told my mom, also referring her to the website. Telling other people with whom I’m close has happened gradually. But lately, I’ve talked more about OCD on my Facebook page, and now I’m sharing my story on your blog!

You’ve struggled with scrupulosity, or blasphemous intrusive thoughts. What are some of your common obsessions and compulsions?

I have struggled on and off with blasphemous intrusive thoughts, as the intrusive thoughts that I experience seem to hop around like the “Whack-A-Mole” game. When I seem to “conquer” one type of scary thought, the content changes to something else that I find equally scary. But, as the experts say, the content doesn’t matter in OCD; it’s still OCD.

I tend to experience blasphemous intrusive thoughts when I’m about to receive Communion in church. At that time, a scary thought about my love or lack of love for God will pop into my head.  In the past, I would pray a certain way to make the thoughts go away. However, through ERP, I have learned to not respond to the thoughts. I learned to treat the intrusive thoughts like any other random thought I experience, not as more important. Additionally, I will sometimes think to myself, “This is my OCD” or “Good one, OCD. Really clever.”

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A couple years ago you faced what many Catholics with religious obsessions might consider a trigger: visiting the Vatican! Were you nervous about going and experiencing unwanted thoughts in a sacred place? How did it go?

Yes! I was nervous about several different things. In addition to feeling like I’d probably experience intrusive thoughts, I was concerned about the safety of being out of the country with my children and the safety of flying. My brain can create lots of reasons for me to feel anxious! However, even though I was anxious, this was an event I didn’t want to miss. My daughter was going to be singing with her school choir for Pope Francis in the New Year’s Day Mass! This was, what I considered, a once-in-a-lifetime experience.

I coped with this by accepting that I might experience intrusive thoughts while in St. Peter’s. Since this was uncertain, and because my OCD tends to throw things at me that are particularly important to me, I realized that I might experience blasphemous thoughts while there. As it turns out, I’m so grateful I went and didn’t allow my OCD to stop me from going! When we were in an auditorium where Pope Francis was to appear, the Pope literally walked across the aisle and shook my younger daughter’s hand! And I touched him! This was (without a doubt) one of the most exciting moments in my life.

In day-to-day life—you know, not the Vatican—how do you approach your intrusive thoughts without turning to compulsions? And what do you do if you realize you are engaging in compulsions?

Usually, I deal with my intrusive thoughts by telling myself, “That’s my OCD.” If I’m not sure if a thought is OCD or not, I may get stuck for a little while. However, I’ve learned to also consider these as OCD thoughts, to make my best guess, and move on, dealing with any consequences later. I also regularly engage in self-care, including mindfulness, yoga, being active at work and home, seeing a therapist, and taking medication.

You’re a therapist, but you don’t treat OCD. How did you decide to become a therapist? Even if you didn’t know you have OCD before you went into practice, do you think dealing with the obsessions had any impact on your decision?

I’m a clinical psychologist, and although I’ve treated a few clients with OCD, it’s not my specialty. I completed my doctoral degree prior to developing OCD, so I didn’t become a psychologist because I had OCD. When I was in high school, I helped in the guidance counselors’ office during my senior year. At the time, I was experiencing some symptoms of OCD, but it wasn’t diagnosed. One day, while trying to figure out what field to go into, I told one of the guidance counselors I thought I might do what they do for a living. She laughed and told me to become a clinical psychologist. So, that’s what I did!

Since I was already a licensed psychologist by the time I was diagnosed, if anything, this may have made it more difficult to seek help. I experienced a lot of shame and self-stigma because I thought since I was a psychologist, I “should know” how to make this stop and get better. I was afraid at that time that if people found out, it could hurt my career. I feel differently about that now, but every now and then, that old fear will resurface.

I love the idea that therapists understand mental illness, in one form or another, from a personal perspective. But others may say they want their therapists to be “perfect.” Have you faced any stigma being a therapist with a disorder?

I have experienced more self-stigma than stigma directly from others. I have struggled with the thought that I shouldn’t have a disorder, should know how to stop it, and shouldn’t need help. On a few occasions, I have shared with clients or students that I have OCD. My main reasons for doing this have been to help them feel less shame, to let them know they’re not alone, and to encourage them to stick with treatment. Also, I have briefly shared my condition with interns or post-doctoral fellows because, as part of their training to become psychologists, I believe that self-care is vital. I hope to normalize them getting help if they ever need it. In general, when I have shared parts of my story with others, I have felt respected. As a side note, I’ve sought supervision from respected colleagues at times, such as when I’ve felt triggered. I try to be mindful about maintaining a healthy boundary between my personal struggle and the struggles of others.

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

You are not alone and it’s not your fault. Get treatment so you can live the life you desire. But most of all, be brave.

Tuesday Q&A: Erin Venker

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11251846_780769322049276_936520711750468242_nFunny story: Erin Venker lives right here in the Twin Cities and she’s good friends with one of my coworkers, but we didn’t meet until we both attended the 2015 OCD conference in Boston. I knew right away I wanted to connect with her back home, and I ended up asking her to be the vice president of OCD Twin Cities, the local International OCD Foundation affiliate of which I’m president. (Okay, yes, I’ve said this about a hundred times before, but the conference is an incredible way to connect with like-minded people.) Not only does Erin have OCD, she went to graduate school to treat it and is ready to take clients. Call me biased (I’m not, though), but Erin is funny and compassionate and really knows her stuff.

How long have you had OCD? And when did you first realize what you’d been going through might be OCD?

I first had symptoms in 5th grade but I wasn’t officially diagnosed until 7th grade. I was too embarrassed to talk about my intrusive thoughts, so I didn’t realize that was a part of my OCD until years later.

What were your symptoms? 

In the beginning, my OCD was mostly rituals of “breathing in” and “swallowing on” the letter A so I would get A’s in my classes. I also did a lot of magical thinking, for example, having lucky and unlucky colors. It soon evolved to include repetitive praying and confessing to my mom thoughts, worries, and “bad” things I did, or else I believed something bad would happen. I frequently had horrible intrusive thoughts, both sexual and violent. That period of my life is fuzzy; I just remember it was extremely painful. Daily life was exhausting. I thought I was a horrible person and was in constant fear that something bad was going to happen to my family.

What do you think about the phrase “pure O”? Some therapists and people with OCD think it’s misleading because people with pure O do have compulsions—it’s just that they’re usually mental, not physical. Is there any benefit to the label anyway?

I’m still on the fence with this. In college and post-college, my OCD evolved into primarily mental symptoms with rumination, trying to“figure things out” by replaying scenarios over and over in my head, a constant fear of offending people, and reassurance seeking.

Even though I do believe there are compulsions with pure O, I think many people relate more to the term pure O. I’ve talked to several individuals who have obvious obsessional symptoms of OCD, but they do not recognize their compulsive behaviors. They do not believe they have OCD without the compulsive aspect and therefore do not seek treatment. This can be extremely distressing for individuals, especially those with pedophilic, gay, sexual, and violent intrusive thoughts. They feel there is no explanation for what they are going through. They may fear they are actually a “pervert” or want to kill someone, etc. The general population also still sees OCD as an anxiety disorder that just consists of handwashing and being ultra-organized (which I am not…). Hopefully the term pure O will lead to more awareness of the other aspects of OCD.

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Erin’s kitten, Kitty!

Once you knew you had OCD, how did you go about treating it? How long did it take before you began to feel some relief?

I did not receive the proper treatment for OCD until 14 years after I was first diagnosed. Before exposure and response prevention (ERP) therapy, I saw several talk therapists, but found little relief. When I was 28,  I saw Dr. Chris Donahue in Saint Paul. He made exposure scripts during each session, and I would listen to them as much as possible. It was about two months into treatment when I really began to notice a difference in my thought process and feel a huge weight lift.

You’ve used mindfulness to deal with some of your intrusive thoughts. How does it work? Does it work best in conjunction with therapeutic techniques such as cognitive-behavioral therapy and medication?

The first thing I want to do when I have an intrusive thought is to judge the thought and judge myself. Why am I thinking this? This is so perverted. Why is this happening to me? Just stop thinking. I can’t stop thinking about this thought. I cannot stop ruminating about what happened. This leads down a rabbit hole of shame and negative self-talk. I use mindfulness to separate myself from my thoughts. I imagine thoughts as orbs floating and I observe them. I notice my anxiety and accept that it’s there. Sometimes I imagine myself on a diving board looking into a pool. I see my thoughts, and accept that they are there, without diving into the swamp. Imagery and acceptance has been a crucial component of my treatment.

Mindfulness is definitely best used with cognitive-behavorial therapy (CBT) as you begin to recognize the cognitive distortions in your thoughts. Am I catastrophizing this scenario that I have repeating in my head for the past three hours? Is this black and white thinking? Where can I see the gray in this situation?

I have a complicated relationship with medication. I do believe it can be essential in helping people with OCD, but I believe ERP is the silver bullet. Like ERP, it took years before I found a medication combination that worked for me. My hope is that medication will be prescribed more slowly and methodically while encouraging it to be taken in conjunction to therapy. Like with ERP and finding a therapist, do your research on medication and finding a physician’s assistant or psychiatrist who is thorough and understands OCD.

What has been the most difficult part of having OCD? 

It’s exhausting physically, mentally, and emotionally. In the heat of the battle, it feels as if you never get a break.

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You’ve recently graduated with your master’s in counseling—congratulations! You plan on specializing in OCD, using both ERP and dialectical behavior therapy (DBT), which is a more recent mode of treatment for individuals with OCD. Can you explain what it entails?

Thank you! I was very fortunate to work at the Minnesota Center for Psychology in Saint Paul for over two years as a receptionist. They run excellent DBT programs, and I learned a great deal about DBT while working there. DBT has four modules: emotion regulation, interpersonal effectiveness, mindfulness, and distress tolerance.

The primary concept I use in OCD treatment is being in the present moment, noticing your thoughts and feelings without reacting or judging. ERP therapy is all about feeling and accepting your anxiety until the distress naturally decreases without distracting yourself or resorting to a safety behavior.

I encourage clients to “urge surf” when they are tempted to perform a compulsion or ritual. This is a mindfulness technique used in DBT. I tell clients when they have an urge to ritualize, ride out that urge, notice where the anxiety goes, and imagine surfing to the shore as the urge decreases. We want clients to break the cycle of using compulsions and rituals to lower their distress, and instead ride through the discomfort. OCD is also accompanied by general anxiety, so I utilize the self-care aspects of DBT, but not for during exposures.

You’ve also decided not to require that your clients have insurance, and you’re going to charge on a sliding fee scale. Why? 

Due to the rising costs of health care, insurance benefits have increasingly become more complex. Self-pay ensures that the client’s records and diagnoses are entirely confidential documents, as I will not have to submit them to insurance or a third-party payer. The content of sessions stays between myself, the client, and my supervisor, Dr. Vernon Devine, who has more than 46 years experience treating individuals with anxiety disorders.

Due to the nature of exposure therapy, treatment often involves appointments that need to be longer than an hour, multiple sessions a week, at-home sessions, and public exposures. Self-pay allows for treatment freedom as well as the time to get to the root of the problems the client is facing. It makes treatment much more effective. Typically treatment lasts no longer than three months before going to an as-needed appointment basis.

For individuals who are adamant about using insurance, I am happy to refer them to other therapists and give some general guidance for seeking treatment.

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

Be sure you get a therapist who is well versed in ERP. A therapist should help you create a hierarchy to confront your fears and anxiety and not be afraid to challenge you. A therapist does not need to have a PhD or PsyD to be qualified. Several therapists who are MA, LPCC, or LICSW are excellent at treating OCD.

Also, find a support network. If you’re here in the Twin Cities area, join the OCD Twin Cities book club or a support group, and if you’re not, look into support groups and International OCD Foundation (IOCDF) affiliates in your area. I am working on starting an OCD therapy group. Look at the IOCDF website. Read books about OCD and educate yourself. Talking to people who understand and realizing how closely your symptoms relate to others can be a huge step in recovery.

OCD is a misunderstood and extremely painful disorder. However, I have found people with OCD are some of the strongest, most intelligent, and creative individuals. We feel emotions deeply and are highly sensitive. There is a way to harness strength in your OCD and embrace the uncertainty of life.