Tuesday Q&A: Morgan Rondinelli

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ocdcon-2015Please help me welcome Morgan Rondinelli to Tuesday Q&A! I loved getting to know her better through her answers, and realized how much we have in common — and not just in our OCD stories. When she included the “fun fact” that she recently declared a minor in writing, I knew she was a girl after my own heart. I hesitate to call Morgan wise beyond her years, but when I was 21 I had none of this figured out. Thanks for spreading awareness and living fearlessly, Morgan!

When were you diagnosed with OCD, and how did you first realize you might have it?

I was first diagnosed at 20, the summer after my freshman year of college, but I am pretty sure I have had OCD my whole life. As early as elementary school, there were weird behaviors I had to do, such as tapping the light switch when I left a room or “knocking on wood” a certain number of times if I thought about someone dying. I knew these were irrational and stressful, but I just accepted them as part of my day. I even remember being aware that my fears changed every couple of years. If a fear was particularly distressing, like the “knocking on wood fear” was, I would just hope that when it switched in a few years it would switch to something less stressful.

As I got older though, I began to realize that maybe my level of stress wasn’t “normal.” I even started seeing a therapist for more generalized anxiety and depression. I don’t think I thought my weird fears and rituals were relevant and something I should mention. My junior year of high school I took AP psychology, and after learning about mental illnesses, I think that’s when I first began to wonder if I had OCD specifically. I even chose to write my research paper on OCD, which was probably an excuse to read more about the disorder. Even after learning more about the disorder, though, and starting to think this was probably what I had, I still for whatever reason kept silent about it.

It wasn’t until I went to college that my OCD got severe enough that I couldn’t remain silent. The stress of moving away from home and taking difficult classes caused my OCD to grow rapidly, especially since I had never learned how to fight my OCD with exposure and response prevention (ERP). I was terrified of my dorm room catching fire, hoarded Post-it notes filled with nonsensical lists, and was unable to read because I would reread so many times, among other things. I started researching my specific fears and OCD again. I read a lot of blogs, probably including yours, and watched several documentaries. At that point, it seemed clear to me that I had OCD; it fit too well. That following summer I asked my mom if I could see a different psychologist and that professional easily diagnosed me with OCD.

I was so relieved to be diagnosed with OCD, but some people feel ashamed and embarrassed to have been “labeled” with a mental illness. How did you feel about your diagnosis?

I was definitely in the camp of feeling relieved. (I wrote this blog post about my thoughts just after I was diagnosed.) Because this was something I had been secretly struggling with for over a decade, learning it had a name, there was an effective treatment, and there were other people who understand felt incredible. Having the diagnosis certainly didn’t take away my OCD, but it did give me hope that I could get better and made me feel empowered to fight back. Maybe if I had been diagnosed when I was younger I would have felt differently, but a diagnosis was something I sought out as the first step to helping myself.

At first, I was shy about revealing my diagnosis, even to close friends. I don’t think it’s because I thought they would react badly, but because I didn’t know how to even start explaining it since I had done such a good job keeping it a secret. With practice, I have become more comfortable sharing my diagnosis and story. Today, I feel next to no shame about having a diagnosis of a mental illness. It truly is just an illness, probably caused by a mix of my genes and the environment I grew up in, so I don’t view it as different from any other illness.mental-health-monologues-2015

With a blog of your own as well as features on The Mighty, speaking events, and videos, at age 21 you’re already a recognized voice for individuals with OCD. How did you get into advocacy? Did you expect to be heard so quickly?

Oh gosh, that’s weird to hear someone as prominent as yourself call me a recognized voice for people with OCD. But to do my therapy homework for the week, which is practicing aligning how I see myself with how others see me as competent, thank you!

I started my blog shortly after I was diagnosed with OCD, and that was probably my first step into advocacy. Really it just started as a place to express myself after keeping all of these thoughts and fears secret for so long. I hoped other would read it, but I didn’t mind if I was just writing for myself. Gradually though, I became more interested in also using my writing for advocacy. I started sharing my blog more widely and looking into other places to publish essays or speak.

Around the same time I started my blog, I also got involved with mental health organizations on my campus. My first big involvement was speaking in our first ever Mental Health Monologues show about OCD. Since then, I have stayed involved with several mental health clubs on campus and now direct the Mental Health Monologues show. I love being able to write for different websites and reach individuals with OCD, or people who just want to learn more about the disorder, anywhere in the world. But there is something powerful about speaking and advocating in your own community, and meeting other advocates on campus.

One of your posts I really identified with — and I identify with a lot of them! — is Why it’s tricky to joke about OCD. Not to toot my own horn, but I have a great sense of humor. I love to laugh and to be goofy and I feel uncomfortable around overly serious people. But I cannot get on board with jokes made at the expense of OCD sufferers. What prompted you to write this particular post? Have you ever called someone out for making light of OCD, and if so, how did that go?

What prompted me to write this post was how many times I have heard or read people saying people with mental illnesses just need to take a joke and learn to laugh at themselves. The thing is, I do laugh at myself and about my experiences with mental illness. A lot. But the difference is underneath it all, I know just how serious and painful OCD and other mental illnesses truly are. Whereas, I don’t think most people joking about the disorder really grasp how bad it can be.

I think about this especially when I am in my worst moments with OCD. I am vastly better compared to when I was first diagnosed, but I still have OCD and there are still times when I get quite stuck. To go off on a tangent, the most recent example was this summer, when I came home from taking classes at my school’s biological station. I had gotten little sleep, taken an exam that morning, and then rode several hours home, all of which are the prefect recipe for OCD. When I got home, I learned a pipe had burst a few weeks ago and water had gotten in our basement. To keep my college stuff (which of course I kept in the basement) from getting damaged, my mom had to move it. For most people this might seem inconvenient or even a little stressful. But for someone with OCD, small things can be very big things.

I still have a massive fear of people touching my things and rearranging them, especially if things are placed in multiple rooms, rather than all together. I am irrationally terrified that something will get damaged or lost. When I got home and saw my stuff, I was completely flooded with anxiety and had a breakdown. I ended up curled in a ball on the floor in between piles of my stuff, sobbing for about three hours. Once I could move again, even though I was exhausted, I ended up staying up late carrying boxes around and reorganizing all my stuff. It’s hard to describe just how overwhelmed and stressed I was about this, and about things as simple as one pair of shoes being put in one room and another being put in the room next door.

I wish people who joke about OCD could see moments like this. Most of the time I am a normal-looking, high-functioning individual, but not when OCD is hitting hard. If they could see these moments and how serious and painful the disorder is, I don’t think they would ever joke about OCD again.

When I joke about the disorder, I’ve lived through these moments. I know they are the reality. I think it’s that knowledge of how bad something can be that makes it okay to joke about it. On a similar note, I’m not bothered when someone like my psychologist jokes about OCD. He treats countless patients a week and, again, knows how debilitating and painful the disorder can be. I know he knows this and empathizes with his patients, considering he is spending his whole life treating the disorder, so I can laugh and joke along with him in those contexts. It’s that underlying understanding of what OCD really is that make it okay to use humor to cope.

The other large reason why jokes about OCD bother me is the simple fact that it perpetuates myths about the disorder and increases the time it takes before individuals who actually have OCD get diagnosed and treatment. I like to hope that if society jokes about OCD less and instead has a better understanding of what the disorder really is, the gap between onset and diagnosis will decrease, which only increases someone’s prognosis of recovering.docc-conference

Did you have any hesitations about sharing your story before you started your blog? What has the response to your advocacy been like?

I definitely had some hesitations at the start, and originally used a pseudonym on my blog rather than my real name. My main concern was that when I go to apply to graduate schools, someone will see it and it will negatively influence their decision. At this point though, over two years into writing and speaking publicly about OCD, I’m pretty much an open book. That might be because responses have been overwhelmingly positive, from both friends and strangers. It especially makes it worth it if I see someone found my blog by searching their symptoms or tells me something I wrote helped them, just as others’ blogs helped me. I’m glad I can give back to others just figuring out their own OCD.

As for graduate schools, I’ve decided if a school doesn’t accept me because I speak openly about my mental illness, then that isn’t a school I want to attend anyway. I want a school that values and supports the mental health of their students, and a campus that has open conversations about mental health.

For me, writing and speaking at conferences about my OCD has been like ERP because (a) public speaking has always made me really nervous and (b) I hid my obsessions for years and years. Have you found your advocacy to be beneficial to your mental health?

For as shy as I am in person, it might seem weird that public speaking doesn’t make me uncomfortable. I think it’s like when I dance; I’m a completely different person when in front of an audience and “performing.” So yes, I do find writing and speaking about OCD beneficial to my mental health. It provides a great outlet for me to express things I might have otherwise kept to myself for another decade. Writing, in particular, tends to boost my mood and I always feel better after I write. One of many reasons why I have just declared a minor in writing!

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

If possible, find a good therapist who knows ERP. Expose as much as possible and make uncertainty your best friend!

Tuesday Q&A: Producers of UNSTUCK

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ocd_conToday I’m hosting Chris Baier and Kelly Anderson, the producers of the upcoming documentary UNSTUCK: An OCD Kids Movie as well as incredibly supportive parents to children with OCD. The kids interviewed for the film will inspire you: They’re articulate and honest, and their stories will help spread awareness about OCD, particularly how it affects children. Stay tuned for the film’s release next spring!

Chris, you have a 11-year-old daughter who has OCD, and Kelly, you have a 12-year-old daughter who has OCD. How did you realize your child might have OCD? Were there outward symptoms such as physical or time-consuming compulsions, or did your child approach you about obsessive thoughts, for example?

Chris: My wife and I realized something was wrong when in the span of a few weeks Vanessa changed from a happy-go-lucky kid to extremely anxious and scared. She was 8 at the time and became frightened of things like small pebbles and trees on our street. She was convinced these objects were poison, would cause cancer and kill her. She was panicked all the time so we knew she needed help, but we did not know it was OCD until we talked with a licensed therapist.

Kelly: My daughter is 12 and her OCD presented with some pretty visible and classic symptoms so I knew right away what it was. She is not in the film and I’m letting her figure out how much she wants to share about her OCD these days so I guess I’ll leave it at that! She is doing some drawings that will be animated for the film so she’s participating in that way.

OCD is such a commonly misunderstood disorder. What did you know about OCD before your child was diagnosed?

Chris: I knew about OCD and that it was serious, but I mostly associated it with being scared of germs or getting sick. I had no idea of the tangled web it weaves.

Kelly: I have one friend whose brother has severe OCD so I was somewhat aware, but that’s nothing like confronting a severe case of OCD in your own child or family.

Since you live in New York City, I imagine — and hope — that treatment resources abound. Was this the case, or did it take some trial and error before finding the help your child needed?

Chris: In NYC there are plenty of therapists who say they treat OCD, but not many do exposure and response prevention (ERP). My wife and I had to do a lot of research about the disorder and one of the reasons it took weeks to get my daughter the right therapy was because we had to interview many providers just to make sure they were trained in ERP. There were none in Brooklyn so we had to take Vanessa to lower Manhattan each week. About six months into her OCD therapy we found a free group program at Mt. Sinai Hospital. This program, led by Dr. Ariz Rojas, transformed our lives. However, it meant traveling one hour each way by subway to get our daughter to the nighttime sessions.

Kelly: My daughter was already seeing a therapist for some other issues, and that therapist confirmed that we were indeed dealing with OCD. We did ERP with her for a while, but eventually we decided to take advantage of a free group therapy clinic run by Dr. Ariz Rojas at Mt. Sinai Hospital here in NYC. Dr. Rojas specializes in OCD and her approach to ERP is very aggressive (I mean that in a good way!). We started seeing her privately as well as in the group, and it was tremendously effective in dealing with my daughter’s severe OCD. I would strongly recommend that parents of children with OCD seek out specialized ERP therapy if at all possible, even if it means traveling a distance for initial meetings and then continuing online.

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When one member of a family has OCD it can affect the entire family dynamic. What advice do you have for parents whose children have just been diagnosed, or for those who have been struggling to support their children for an extended period of time?

Chris: OCD totally hijacked our family and figured out ways to manipulate and dominate everyone. As a parent, your first thought is to soothe and accommodate, but that’s the worst thing you can do. My advice for parents is to immediately start educating yourself on what OCD is and how it’s treated. Learning about the disorder became our second job. We read books, joined Yahoo groups, watched videos, joined the IOCDF and talked to a lot of people. We needed to understand as much as we could. Eventually, we started a parent group in Brooklyn because we needed to talk to people who understood what we were going through.

Kelly: Learning how to be dispassionate when doing ERP homework with your child is very important. You need to get used to seeing your child in a lot of distress without losing your cool or over-identifying! I also learned that when I react to my child’s OCD with anxiety, it makes her OCD worse. It can be incredibly hard to stay calm and non-reactive, especially if they taking out their anger on you, but if you get upset it just makes everything worse. Finally, trying to be compassionate instead of getting angry at any OCD behavior is key. I found that a very important and difficult lesson to learn, but it’s made a world of difference.

You met at a support group Chris runs for parents of children with OCD. How did you go from that initial meeting to collaborating on UNSTUCK: An OCD Kids Movie?

Chris: Our kids both attended a weeklong OCD summer camp at Mr. Sinai Hospital. One day Kelly was driving her daughter and Vanessa home. The girls were talking about OCD in a very knowledgeable way and that sparked an idea. Kelly approached me about working together and I’m so happy she did. UNSTUCK is something that I think will help many parents and children.

Kelly: I make films as my profession, and last year I had just finished a big project and was thinking about what to do next. I realized I was spending all my time reading about OCD, and it was hard for me to focus on anything else because it was such a big part of my life! The biggest obstacle standing in the way of making a film about OCD was my discomfort with showing kids going through ERP — I knew from experience that no parent would want the world to see their child in such a vulnerable position, and that the kids wouldn’t feel good about it either. I saw another film, Ellen Bruno’s Split, about kids and divorce, and I really liked the way the kids just talked about their experiences in an interview format. I knew Chris through the support group, and had noticed that he was passionate about connecting families and kids with OCD, and we came up with this idea of “kids as experts on OCD.” It’s been great working together on UNSTUCK: An OCD Kids Movie.

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The children who appear in your film inspire me! It took me years after diagnosis in my late 20s to start talking about OCD, and I still get nervous. Were there any obstacles to finding children who were willing to open up, and parents who were okay with that, too?

Kelly: We are really indebted to several of our advisors who are mental health professionals — in particular Dr. Ariz Rojas at Mt. Sinai Hospital and Dr. Eric Storch at Rogers Hospital. They were willing to approach some families about participating in the film. We found other children through the OCD and Parenting Yahoo group. I am really very thankful to Vanessa and Jake, the first two children we filmed for the trailer. I think they inspired other kids to participate because they were brave and articulate, and potential participants could see how important it is for kids to hear from other kids who know what they are going through.

I think it speaks to a greater level of acceptance of difference in general, and of mental illness and disability in particular, that kids are willing to tell their stories. These kids really want to help others with OCD — it’s amazing to hear them talk about why they want to be in UNSTUCK.

You have an advisory board of professionals — adults — in the field. How much input have you gotten from children with OCD, and what’s been the most surprising, helpful, or enlightening piece of insight they’ve shared?

Chris: We talked with probably 15-20 children and families before picking our cast. Every child we spoke with help us frame our approach. These kids and others in the OCD community really helped inform the discussions we had during filming.

As for what surprised us, collectively two themes stand out. The first is the loneliness each child experienced when OCD was really bad. The second is the bravery each of them showed while learning to fight back. Some children have had to do some drastic things to get control of their lives. We’re in awe of their strength.

UNSTUCK seems like a real labor of love. How does it feel working on a project that’s so personal, and how have you managed to fit it into your schedule?

Chris: Schedule-wise, we set mini deadlines and I think that helped us stay on track even though we never had an official release date. First we wanted to get the trailer finished by winter 2016 so we could start fundraising and spread the word about the film. Then we planned a screening at OCD Con in July, which meant we had to film more children in order to have something to show at the conference. Now we’re focused on finishing by spring 2017 so that we can share it with the world.

Kelly: It’s definitely a labor of love! We also were really fortunate to get some funding from the Kellen Foundation for it, so that has been really helpful. It’s always a challenge to get films made but we are really excited it will be coming out this spring!

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What can my readers do to help make UNSTUCK a reality? 

Chris: It would be great if people joined our mailing list on our site and/or like our Facebook page. This way they get first look at new content and get notified immediately when UNSTUCK is finished.

Kelly: Well, we are still looking for donations. Every dollar will go toward getting the film finished and out into the world. We really want to do a big engagement campaign with it, showing it in festivals, conferences, community organizations, schools, and more.

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

Chris: I would say parents and caregivers should understand that they can’t magically fix a child. Kids have to learn the tools themselves. I found that the best thing was to become an advocate and cheerleader for my daughter. So, just find ways to help and support your child so they can focus on therapy.

Kelly: Don’t blame your kid for their OCD even though it makes life miserable for everybody. They are dealing with a tremendously stressful mental illness and they need your love and support. And forgive yourself for the times you act in ways you regret — we are all only human! Do whatever you can to get your child to a cognitive behavioral therapist that specialist in ERP for OCD (the International OCD Foundation website can help you find someone qualified). That really saved our lives.

Tuesday Q&A: Angie Alexander

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fullsizerenderWelcome, welcome to this week’s Tuesday Q&A! About a year ago I started to see today’s guest, Angie Alexander, comment with compassion and wisdom in some of the OCD support groups I belong to on Facebook, and then one weekend afternoon last spring we participated in a four-person video all about intrusive thoughts. Angie was so knowledgeable I assumed she’d been at this whole advocacy thing forever–imagine my surprise when I learned she’d been diagnosed just months before! She’d gone from years and years of confusion to a flash of clarity and right on to sharing her story with hundreds of fellow sufferers on Facebook. Folks, it took me years after diagnosis before I could talk about my intrusive thoughts, so Angie’s courage and the way she almost immediately payed everything forward floored me. And I don’t know how she finds the time. She has five kids!

We got to room together at the last conference–we’d never actually met in person and suddenly we were sharing a bed. “Great to finally meet you! All right, lights out. I’m sorry if I snuggle up to you in the middle of the night thinking you’re my husband.” She’s just as sweet and genuine in person as she is as moderator of several support groups on Facebook, including the first she started up, Friends With OCD. Let’s hear more from Angie–her answers are truly beautiful. I was touched to read them and I’m honored to share them with you, my dear readers.

Like so many other people with OCD, you had the disorder for years before you were diagnosed. What obsessions had you been struggling with the most, and how did you finally realize what you’d been going through might be OCD?

By far, the most intense and dominant themes in my experience were hypochondria (aka “health OCD”) and harm OCD. Health OCD was the most prominent throughout my journey, whereas harm OCD didn’t rear its head until after the birth of my first child. I suffered with feeling as though I would be diagnosed with other life-altering illnesses that my family or close friends had suffered from, and any fever or headache meant certain death. As a small child I begged for reassurance from my mother that little bumps I had found through careful exploration were not in fact cancer, and that the fevers or stiff necks I felt were not indeed meningitis. My loved ones always wrote off my illness and coined me as the more “sensitive child” and my acute fears were treated as more of an annoyance than a legitimate illness to be evaluated and treated.

After the birth of my first child, I was debilitated with anxiety. After being exposed to a news broadcast about a mother who had drowned her five children in a bathtub, I experienced harm thoughts night and day, and was terrified to be alone with my child. I turned to a few older women who were religious, and naturally accepted the belief that through enough prayer and bible memorization, my malady would resolve on its own. After all, it was certainly not the kind of thing you’d take medication for or spend money to fix. It was about self-discipline and having enough strength to brave your own mind. Or was it?

Fourteen years had passed, along with plenty of bible studies, prayers, and petitions to any available deity that could perhaps heal my broken spirit. Moreover, my seemingly broken mind. OCD ebbs and flows, as most of us who suffer from it have come to know. It receded and swelled throughout those sometimes excruciatingly long years, until finally after the birth of my fifth child, I could no longer go at it alone.

I knew that whomever I shared my story with had to be full of wisdom, and moreover compassion, in order to truly grasp the heart of the matter. But whose life is overflowing with this quality of person, right? Out of a sea of people over 14+ years, how do you set your mark on one sort of super human? I don’t know if it’s just where I’ve walked, but my life hasn’t necessarily been overflowing with a sensitive sort of people if you know what I mean. It’s not like you can just walk up to someone who you respect and admire, and moreover who you hope respects and appreciates you in return, and explain to them that you think you might be a danger to your children and that, just in case, you probably shouldn’t be left alone with them. Any time you open up to someone, it’s always a gamble. You’re sharing pieces of yourself, like in a game of chess or something. You’re moving your pieces around, and you’re hoping it’s allowed and you’re hoping you’ll survive, and when someone takes a piece that you’ve exposed, they just play fair. That’s all any of us really wants, I think. Well I gambled, and I chose to expose my most vulnerable pieces in an attempt to survive. In nothing more than desperation and only about an ounce of deliberation, I opened up to a trusted friend. Out of anyone I could have dumped my problems on, this was the only one who made sense. I’m so glad for it too, because she totally got it. She even shared similar experiences, and what’s more, directly sought treatment for me with me. She introduced me to a term that really set my soul free: Intrusive thoughts. Such music to my ears! We found a specialist who specialized in treating people with intrusive thoughts and after three appointments with her, and lots of digging into my past (I’m a fast talker!) I discovered she wasn’t getting to the real issues.

I took to Google because sometimes being your only advocate is all that’s between you and recovery, and I uncovered the term obsessive-compulsive disorder. It was like my identity was unearthed, and something woke up inside of me. I suppose it was hope. For the first time in over 14 years I felt deeply known and understood. Granted, it was only Google rocking my world at this point, but mercy. It was only going to get better.

You were diagnosed just a year ago, and in that short time you’ve become an awareness force to be reckoned with. How did you go so quickly from diagnosis to using your story to help others?

From that first moment there in my dining room, where the seat that I was sitting on was warm from hours of searching, a fire was kindled inside of me, Alison. It was like I was validated in all the suffering I had quietly endured. It was like someone who couldn’t hear was being given the ability to listen to a symphony for the first time. Like a person who was mute was given the opportunity to speak again, or for the very first time too. Without sounding too dramatic here, it was like I was in exile, and I was coming home again. After being quiet for so long, there was no other choice but to speak out. I just had to do something. Telling people how set free I was seemed like the most authentic option, and that’s how I was determined to live: Authentically.img_7998

Since you’re a mom yourself, in the beginning you focused a lot on reaching out to other mothers with OCD. Would you say many of these women have obsessions about their children, or do you find yourself offering support for navigating the daily realities of both OCD and motherhood?

I would say that over 75 percent of the mommies I’ve reached out to and who have reached out to me have struggled with obsessions surrounding their children in some fashion or form, although I don’t think you have to be a parent to obsess about children. I think having children is just another aspect of our life that OCD can manipulate. In many ways, being a mother saved me, as it has many others. When you’re obsessing about co-workers or friends or extended family members, oftentimes it’s easy to remove yourself and engage in avoidant behavior. This is not easily done in the case of a parent or primary caregiver. Somewhere along the lines between when you wake up and when you go to bed, whether you stay at home or whether you have a career, you are responsible for this little human being and that takes personal touch and time, and consequently inevitable exposure. Children are not easy to escape or to avoid, especially if they like you.

In most cases, especially after a mommy has gone through treatment and entered into a season of recovery, OCD manifests itself differently and unsuspectingly. For example, we’ve just returned from a night of trick or treating this evening. As I write this, I’m currently in my room editing some of the responses for this fabulous blog. In the back of my mind I feel an almost overwhelming desire to go check my children’s candy. Seeing as how I like to fall on the side of laziness from time to time, I’d just as soon throw the whole kit and caboodle out than go searching every candy wrapper for a razor blade or drug paraphernalia. But even something so basic as this little “problem” that my brain feels urged to “solve” can become an insipid recipe for OCD to reach back into even a small piece of my life again. Other moms search candy. Other non-sufferers caution about checking the candy for any curious-looking wrappers or discoloration… So I find myself sharing a lot just about the basics, because OCD can seep in most indirectly, and often we just need another set of eyes to help navigate through the less than obvious life happenings sometimes. Which leads to the next question!

You run a couple of different types of support groups on Facebook. Can you explain the difference between secret and closed?

So I started a closed group called Friends With OCD back in December 2015, a month after I was officially diagnosed. This group was created so sufferers could come together and share more about their life and their families and their trials that often overlapped with OCD, but not always. I felt it was important to preserve the integrity of intimacy that we as sufferers often crave, so I decided to make the group “private,” which just means that the group can be searched for and found in a search engine, and depending upon your settings, people can see that you are in the group, but unless someone is a member of the group themselves, they cannot see what members post. After meeting the most genuine and authentic people on the planet through this outreach, I saw a need for theme-based groups. This just means that people with, for example, POCD, or HOCD, or harm OCD usually just want to find others with their same obsessions so they can reassure… ahem… I mean support one another as they seek proper treatment to overcome their illness. So I created “secret” subgroups that are sort of like the sibling groups to Friends With OCD.

Creating a “secret” group can be much more challenging and require much more care and attention because with this kind of group, it cannot be found via a search engine, even with the most detailed searching. Sufferers discover these sorts of groups through word of mouth only. They have to be friends with someone on Facebook in order to be accepted and added into the group. With either group, however, I am the only moderator who “adds members” and am very cautious in doing so. To be added to the “secret” groups you must currently have, or have had in the past, the theme the group illuminates. In regards to Friends With OCD, you must have OCD, or have a child or close relative who has OCD. I do my very best to ensure that we share in a relatively safe and supportive environment and that the gold standard in treating OCD is upheld and that reassurance and other compulsive behavior is moderated and discouraged. Compulsive behavior is allowed, however, and even welcome, as we are all at different places in our lives and grow at different paces. Above knowing the “right” stuff, it’s more important to feel cared for and accepted for who you are. When we feel free to lay our burdens at each other’s feet and can in turn be confident that we will be cared for in our vulnerability, that’s where real healing and true recovery is cultivated. At least that’s what I think.

What can members expect if they join one of your communities?

Acceptance and genuine support from fellow sufferers who have been where they are or are headed where they are going. The biggest complaint I receive from people who become members of any of the groups I moderate is one main thing: Sufferers are triggered by other sufferers. With any sort of exposure, this is of course a sort of inevitability. But just as I did when I first sought help for my illness, I weighed the cost. Is finding peer support and holding hands with others who totally and completely get you valuable enough to you to risk being triggered every so often? Being triggered is something that I use in my own life to remind me of my frailty and to keep me humble on this road to helping others. Triggers can be scary and overwhelming and can set us back a few steps from where we want to be. Accepting where you are, whereever you are, with whatever you feel, can help you in the journey we are on in online support groups. Triggers don’t keep us safe. They keep us ignorant of how sick we are, and how truly strong we can be.

You don’t live in a city. In fact, you live on a farm with dogs, cats, chickens, and even a resident snake! Was it hard finding a treatment provider? Do you have any advice for people who may not live anywhere near an OCD specialist?

We moved from Detroit, Michigan, to the quiet hills of Tennessee, and it has been rather isolating in a lot of ways. We do have no shortage of pets to keep us company, though, that’s the truth. We name all our animals after herbs, but our snake’s name is Hank. Not sure what happened there. But little by little we are learning out here in the middle of nowhere that everything in our life is able to serve a purpose if we make room for it and examine its potential in our experience. Because we live so far from civilization, the closest “real” city is a little over an hour away. When I sought an OCD specialist, I found a few in that city, so I was able to obtain care a lot closer than many of the sufferers I rub shoulders with.

Finding effective treatment is, in my humble opinion, the #1 problem right now in the OCD community abroad. In every country, really. I talk with people from the UK, Africa, Australia, China, Russia, Canada…we all are crying out for better treatment options. If a sufferer cannot find treatment in their area and none are available via teletherapy, the next best thing is self-help books. I only had three months of formal therapy with an OCD specialist and have learned the rest of what I know and practice through self-help books. I do believe that we are often called to be our own advocate, especially in the season in which we live. No matter what the situation is though, there is always reason to hope.

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

If I could just share one piece of advice with someone who is currently in the throes of OCD, or who is worrying about perhaps being in its grip again, I would say this: Wild acceptance.

No matter where you are on this road we are walking together, and no matter what thoughts you’re struggling with and no matter what seems insurmountable to you today, tomorrow, or yesterday… Acceptance is the key that unlocks every obsession. If you live trying to avoid anxiety and discomfort, you’ll never reach beyond yourself and your obsessions and get to live the life you truly deserve.

Some people ask me, “What is acceptance?” “What does that look like?” “How does a person live that out in the midst of a debilitating truth your mind is accusing you of?”

When I was a little girl my mama used to take me to a little place called “the gravel pit” in Michigan. Sounds majestic, right? It was not really large enough to be a lake, but bigger than a pond, and it was full of fish and fun in the warm summer months. I remember all those days we spent out there really well, but my fondest memory was the time my mom took in teaching me how to float. You know, where your body just lays limp on the surface of the water and both sky and sea feel like one substance. Okay, okay. It was a pond on steroids and not a sea, and my limp body wasn’t limp long because my brother was obsessed with cannonballs. He may have liked to see me squirm back to the surface too, after almost drowning from those mammoth waves that he somehow executed with precision. Every. Single. Time. They swept over my fragile body and debilitating fear ensued, along with my mother coming unhinged at that hooligan of a preteen.

Anyway. My mama used to hold my 60ish-pound body up to the top of the surface of the water. (That’s support groups.) As she spoke in such a Mr. Rogers tone, I was lulled to trust. I’m sure it was her confidence in me. She told me what I could do, and that little girl in me trusted that I could. With much trepidation still, of course. She started me out in the shallow end, where I knew my feet would land if I decided to give up too soon. But gradually she took me out to deeper and deeper waters, all the while building my trust in her. Before long I was floating all by myself, and before too much longer, I could float on even the sloppiest of waves from my growing (in annoyance and size) big brother.

The most valuable lessons that I carry with me today were the ones I learned out there on the surface of that water. When I let go of all the control. Where I relinquished (almost) every ounce of fear. When I laid there, unsure of whether I would live or die sometimes, and just surrendered it all on the water. My mom would see an elbow drop below the surface… or my lower regions. There was no saving that section though. But any time my mom would notice that I began to try and take on the water in my own strength with my own willpower, she would gently whisper, “Just close your eyes and let go.”

Acceptance for me is in the letting go of every aspect of my life. I know, it feels like letting go is so scary. Everything sensible in you is screaming, “RECKLESS! IRRESPONSIBLE!” Maybe it is a little bit of those things. But if I’ve learned anything, it’s that I have to abandon the life I thought I needed or wanted in order to live the life I truly deserve.

So in the words of Bruce Lee: “Be like water, my friend.”

Tuesday Q&A: The Secret Illness

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secretillnessiiThe Secret Illness is a beautiful, illuminating art project that spreads awareness of OCD to those who don’t understand what it really is and helps those who understand it all too well feel less alone. It gives sufferers an outlet for sharing their stories without fear of stigma, because their faces are pixelated and they can decide how comfortable they feel about sharing details such as their name and location. I did one myself, and I had them use my first name and my state, but others are completely anonymous, leaving off their names as well as geographic details. Let’s learn more from the project’s founders, Becca Laidler and Liz Smith!

Do you have OCD yourself?

Becca: My mother has lived with OCD since she was young although she was not diagnosed until much later into adult life. Growing up with her routines and rituals has made me very aware of my own mental health. I do not feel like I live with OCD on a day-to-day basis, but when small rituals do find their way in during stressful periods I find it quite panic-inducing as I have seen the effect on my mum when they get out of control. I have written my own blog post on The Secret Illness wall about my relationship with OCD.

What inspired you to create the Secret Illness, and how did you make it a reality?

Becca: I feel that if my mum had been diagnosed at a younger age she would have had a much more enjoyable and happier life. Even now after diagnosis she feels embarrassed talking about how OCD affects her day-to-day life. We wanted to create a safe place where people could speak their fears without being judged and create a catalog of varying experiences so that people can see they are not alone. We are extremely lucky to have some great collaborators and volunteers who help us make this a reality.

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Liz: Becca! When Becca told me about her mum’s experience I realized I had no clue about what OCD was and I wanted to explore it more. Then soon after I had an amazing conversation with someone I met quite randomly on a plane trip to New York who was diagnosed with OCD, and that just increased my interest further …we’re still in touch to this day.

Are you surprised by the response you’ve gotten to your call for submissions? 

Becca: We were blown away at the response from the OCD community. I never imagined we would get as many posts as we have and from all over the world. We have also been sent so many poems, paintings, music, and other creative works based on OCD. The work is of such a high standard and breathtakingly honest.

Liz: I had no idea what to expect, but the response went way beyond anything I had imagined both in terms of the number of the responses and the quality of the responses.

Your beautiful project is fostering understanding and breaking down stigma about OCD. What do you think is the most harmful misunderstanding about the disorder?

Becca: Most people think they know what OCD is already ,which means misunderstandings have to be broken down first before people can accept the true debilitating nature of this illness. When people use OCD as a positive adjective for being neat and tidy it can be very demoralizing to those suffering in silence.

Liz: Same answer as Becca: the fact that people think they already know what it is, so when they come across it in reality it gets left undiagnosed because they don’t recognize it as the OCD they think they know about already.

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How can my readers get involved with the Secret Illness?

Becca: We welcome new wall posts from anyone with a relationship to OCD. These can be as long or short and as anonymous as you like. You can email them to wall@thesecretillness.com. We also welcome any creative works relating to OCD and any creative individuals who may want to volunteer to help us achieve our films and installations.

Liz: In addition to what Becca has already said, we’d like to hear from people as to what topics they’d like us to cover in the podcast series or perhaps they would be up for being interviewed for the podcast. We’re also always on the lookout for creative industry professionals to get involved, so for example Mitch Grussing, who lives with OCD himself, is a composer by trade and he volunteered to compose the music for the podcast (and didn’t he do a wonderful job!). Are there any illustrators, designers, animators, video editors, sound designers/editors out there who are living with OCD who would like to collaborate and help us turn some of the wonderful poems and monologues we’ve been sent into short films? We’re also interested in talking with people involved in theater and I’m on the lookout for someone who has experience of creating physical art installations.

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

Becca: You are not alone. The more you speak about how you are feeling and what you are going through the easier it is for you to receive the support or treatment you need. Many people never speak their intrusive thoughts out loud as they fear they will be judged as crazy or dangerous, but this is what OCD wants. Have a look at some of the accounts on The Wall and you will see how many people thought they were the only one feeling this way.

Tuesday Q&A: Mark Joyella

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mental-illness-awareness-181If you know me, you know I believe we all have the power to spread awareness, even if it’s to one other person in our lives, and that every little bit matters. A journalist with nearly 12,000 followers on Twitter, Mark Joyella is in a position to spread awareness far and wide, and we’re lucky enough that he’s willing to! I first heard of him when he wrote a great piece called “Screw stigma: I’m coming out” about his personal experience with OCD, and I’ve since learned he stands up against the stigma and misconceptions surrounding mental illness in general.

As a journalist, you’re in the public eye. And, right or not, people have certain expectations of public figures, so you took what some would consider a risk when you wrote “Screw stigma: I’m coming out.” Why did you decide to disclose that you have OCD? How was the piece received?

I had grown increasingly concerned about the content of news stories and how mental illness was being handled — it felt to me that instead of illuminating the topic, some of the reporting merely reinforced stereotypes. I felt that failing to disclose my own illness —  and refusing to speak out because I didn’t want my illness public — had become an unbearable situation. The reaction was exceptionally positive, and I immediately connected with other journalists who had revealed their mental illness — and others who weren’t ready to do so.

You note in that piece that you were never shy about telling co-workers about your physical symptoms and ailments, and refer to being recognized during a colonoscopy as “a decent anecdote.” But you weren’t willing to talk about your mental illness in the same way. Tell us why.

I think most people look at physical illness as something that happens to you, while mental illness, unfairly, is seen as who a person is — that’s why people with mental illness often feel judged or blamed. There’s also a kind of bond in sharing stories of physical illness — even the awkwardness or unpleasantness of the illness or the treatment — that makes sharing stories an easy thing to do. But with mental illness, there’s no guarantee how you will be received, and no way to know if anyone will identify with what you are experiencing, even though the statistics tell us it’s highly likely in any given workplace there are several people who are in some way touched directly by mental illness.

When were you diagnosed with OCD, and how did you realize what you’d been going through might be OCD?

OCD was first mentioned to me by a therapist as we were working on my struggle to break out of personal isolation — there were tons of fears that kept me inside my home and not living. But because I was able to get to work and even travel extensively on stories, I wasn’t aware of how isolated and afraid I really was.

After you were diagnosed, how did you feel? How did you go about treating your OCD symptoms?

On the one hand, it’s nice to know there’s an explanation for what you’re experiencing, and I liked that. But OCD? Because I don’t have outward compulsions, it was hard to accept at first. But a psychiatrist agreed with the diagnosis, and off I went. I began studying up on the disorder, began taking medicine to treat it, and I began to get better.

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People often ask me how I told my loved ones that I’d been diagnosed with OCD, so I’ll pose the same question to you: Who did you tell, and how?

I didn’t tell anybody at first. The only person outside my doctors who knew was my girlfriend — now my wife — who had struggled with the walls I had put up to protect myself. She had suspected OCD, but I must admit it sounded like a wild idea until the “experts” said, yep, that’s it. The rest of my friends and family learned of my diagnosis when I wrote my story. Probably not the best way to bring it up — but it worked, and I’m sure I would’ve lost endless amounts of sleep trying to prepare for a conversation about it — this way the band-aid came right off and I didn’t have to begin the conversation at all. “I read your story,” people would say, and we would talk about it. For me, that was the easiest way: I threw it out there all at once.

What advice do you have for my readers who want to advocate for OCD awareness but don’t know where to begin? And what if they’re worried how people will perceive them?

I’ve been massively impressed with the ways people advocate for OCD awareness — with small steps and giant efforts. There’s a way to do it for every person. I’ve used social media to call out news stories that I felt were poorly done, and to try and boost the signal for people who have good stories to tell. But sometimes the smallest actions — like seeing a person on Twitter who says they are suffering with the illness, and responding “you’re not alone” can have an impact. Imagine hearing that from a person in a country far away when you really, really needed to hear it.

I admire how open you are on social media, and how willing you are to call people out when they’re being ignorant. I laughed out loud at this one. I’ve been insulted and even sworn at for doing similar things. Have you ever really gotten into it with anyone?

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I’ve had fellow reporters get very defensive when I criticized the words they used in stories (one example: a reference to a person with mental illness “escaping” from a “mental institution.” I wrote: “do you mean a “patient” fleeing a “hospital”? The reporter blamed the law enforcement agency for using the terms, and said he was merely repeating what the “official” information was. I said, you know, you don’t have to repeat stigma-reinforcing language. And people get really offended when you call out OCD jokes. They never meant any harm and they can’t believe you are attacking them for turning OCD into a punchline. But man, I hate those jokes so, so much.

On a broader level, you’ve worked on several pieces addressing how the media reports on mental health in America — for example, it seems that whenever there’s a mass shooting reporters feel comfortable diagnosing the shooter with some mental illness or another. What can reporters do differently — and better?

Reporters can get educated. There are tons of resources — around the world — for journalists to learn more about what mental illness is, how common it is, and how not to fall into the traps of writing stories that are filled with inaccurate assumptions.

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

It’s OK to not be OK. Recovery is not a straight line, and I find that great weeks when I push my boundaries and challenge my fears, are often followed by weeks when I need to step back and while it’s tempting to see that as a failure or setback, I think it’s like resting a sore muscle after pushing it hard during training. You don’t just get stronger and stronger. You push, you rest, you get stronger, you push again.

Tuesday Q&A: Jonathan Grayson

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14610589_1152487181504817_1808445062_nMaybe you haven’t met Jonathan Grayson in person, and maybe you haven’t read his book — yet. But if you’ve been to the International OCD Conference, you’ve probably seen him leading a huge group of people through the hotel lobby, armed with a bullhorn. Ask a random sampling of these people what their favorite part of the conference was, and they’re likely to say it was this Grayson-led adventure, the mini-version of an OCD camping trip where people take a couple of hours out of their long weekend to face some of their biggest fears.

Of course, as an OCD therapist Dr. Grayson guides people through their biggest fears all year-round, not just once a year at the OCD conference. I’m so honored to share some of his insights here, and I hope you’ll find his advice helpful.

When did you decide to treat OCD specifically? Did you know while you were still in school, or did you decide after you’d been in practice?

The short answer is that I’m working with OCD because I wasn’t able to control my life when I wanted to. Before elaborating, let me give you some background. Before I had ever heard of OCD, in high school, the inherent uncertainty of reality fascinated me. I went through a long period of aggravating almost anyone who spoke to me by ending almost every statement with, “more or less.” “More or less what?” they would question, to which I’d respond, “If it’s more or less, does it matter?” For my college honors thesis, my supervisor commented, “You’ve picked a very ambiguous area as your focus — that’s just like you.”

My circuitous path to OCD began with graduate school. Using the shotgun method of applying (apply to as many schools as you can afford and maybe you’ll have a hit), I had applied to all of the schools that attracted me and was looking for a safety school. With typical East Coast bias, I settled upon the University of Iowa — what could possibly be in the middle of Iowa? Upon getting in, I discovered Iowa was a good school and that’s where I chose to go. If I had known it was good school, I wouldn’t have applied. Going to UI and working primarily with Dr. Tom Borkovec, who is well known in CBT circles, led to me getting an internship at Brown, where I worked with my first OCD patient. This still wasn’t the beginning, the deciding point, of devoting myself to OCD. On my internship, we were allowed to choose our rotations, though all rotations had to be filled. The one rotation I did not want, was the intensive alcohol dependence rotation. I got stuck with it. The basis of the GOAL groups, which played a significant role in my early reputation, came from that rotation. Finally, when looking for a first job, my wife and I decided to stay on the East Coast, but I didn’t want to go back to Philadelphia. The only job I could find was working with Edna Foa on her first OCD grant. At that time, we were the only OCD center in the country and her research on exposure and response prevention (ERP) is the foundation of all treatment today. So my devotion to working with OCD began in 1979 working at Temple University with Dr. Foa. So there were three critical occasions in which had I had control, I would have made decisions that would not lead to my present life. I like to think the alternative life would have been good — maybe or maybe not, I’ll never know. I do know I like this reality and feel so lucky to have a passion for my work. The takeaway: You may not get what you choose in the short run and the path to success is moving forward with whatever happens. Alternative realities/fantasies are perfect, but they because they aren’t real.

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Not only is your book Freedom from Obsessive Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty well rated and well reviewed, it also won the Self Help Book of Merit Award from the Association of Behavioral and Cognitive Therapies. That’s quite an honor! Where did you get the idea for the book?

Thank you for the compliments. It is my heart and soul. I kind of wanted to write a book; I’m opinionated enough to feel and hope that I had something different to offer. However, it wasn’t until I was lucky enough to be approached by an agent about writing a book that it became real. The agent asked if could I write a self-help book about OCD that could be about 300-400 pages long. I had just completed a 25-page document for the OCD Foundation that I felt contained everything I knew about OCD. So, of course, I said yes. I had three goals in writing my book. I wanted to help people understand all of the ins and outs of OCD in a way that made sense. To say, for example, OCD is a neurobiological problem that is related to serotonin availability in the brain may be an explanation, but it is not something that helps the sufferer to understand the experience. I believe that treatment works much better if the sufferer has an explanation that makes both logical and emotional sense; that is, the logic of the explanation should be accompanied by an exclamation of “That’s me!” Freedom from OCD is written exactly the way I speak to sufferers — without the uhs and ums — in hopes it would make sense to sufferers and to give professionals the language to use. The second goal of the book has to do with the twofold problem all self-help books have: Will the reader follow the program outlined in the book and is the program actually doable (and individualized so that it isn’t a mechanical manual)? Hopefully the program I outlined achieved that. As to the original question, where did I get the idea for the book, it was simply the sum of my work with OCD.  I often joke that I only know about 40 minutes of material that is not already in the book.

It’s incredible how much progress has been made in understanding OCD in recent decades. You started the first OCD support group in 1981. Are you surprised by how much awareness has grown since then? What do you attribute it to?

I’m afraid I disagree with the premise of the question. The core of treatment is still the same as what we were doing in the early ’80s; although, it is true we have found a number of ways to augment and facilitate treatment through the use of ideas from acceptance and commitment therapy (ACT) and mindfulness. However, all too often I also see these same techniques and others used incorrectly. In ’80s, I assumed that by the ’90s OCD treatment would be easy to find and available everywhere, that I would be good for supervision, but not part of a small therapy community. Tragically, I still see people who suffer unnecessarily for years, not because they have OCD, but because of therapists who don’t know what they are doing. In their treatment guidelines for OCD, both the American Psychological Association and the American Psychiatric Association agree that ERP is the first line treatment for OCD. There are virtually no OCD experts who disagree, whether their prime focus is upon the psychology or biology of OCD. And yet, it is still hard to find providers who know how to treat OCD, even in major cities. Unfortunately, we have discovered that it is easier to help someone suffering from OCD than it is to change the behavior of mental health professionals.

I know many people who’d love to start a support group but aren’t sure how to go about it, and they may think they need to be therapists or “perfectly” recovered in order to be effective. Do you have any words of encouragement or advice?

The most difficult part of starting a support group are the initial logistics of where to hold the group and how to let the public know that it is available. I don’t think a therapist or “perfectly” recovered person has to run the group for it to be effective. My personal preference is therapist-assisted, meaning the sufferers run the meeting, but a therapist is there to troubleshoot; however, that is my preference, not a rule. The main quality required of the organizer(s) is dedication. There is a GOAL (Giving Obsessive-Compulsives Another Lifestyle) manual available to help people start and run a group. The manual is available in three places: It is included in Freedom from OCD, or it can be downloaded for free from the International OCD Foundation or from FreedomFromOCD.com.

What do you see as the most common misconception about OCD?

I think there are one and a half conceptions. The half is that most non-sufferers don’t realize that the core of almost all OCD problems is intolerance of uncertainty in the sufferer’s problem area — or to put it another way, in the sufferer’s problem area, there is an attempt to be 100% certain, e.g., I want to be 100% sure I’m clean, 100% sure I’m not gay (or straight), 100% sure I didn’t run someone over, and so on. There are two problems with this. First, research has shown us that the only people who are 100% certain are stupid. Since most people with OCD have above average intelligence, we won’t be able to help them be certain. The second problem with certainty is that it is not a fact, but an emotion like anger, joy, and sadness. We may be able to decide how to express an emotion, but not whether or not to have it. Certainty is an emotion that correlates with reality, but not perfectly. Most of the time, my feeling of certainty — terrorists aren’t waiting for me outside of my office; my car isn’t stolen; my wife is alive — turn out to be true. But that doesn’t mean the feeling reflects truth. In this country, I assume that most people on their wedding day feel certain they will be with their new spouse forever. Half of them will be wrong. Certainty is a nice feeling, but it doesn’t mean that you are holding onto a truth.

Failure to recognize intolerance of uncertainty is the half a misconception. The other misconception is the failure of non-sufferers to recognize the agony of having OCD. The reason for this is indirectly the fault of sufferers. For the most part, people with OCD are experts at hiding their symptoms and if they talk about their symptoms, they sound calm.  We have a name for this ability: Competence, the ability to function when stressed as if everything is okay. It is a great skill and I don’t want anyone to get rid of this skill. I do want to help people to not have to rely on it as often as they do. The plus side of the skill is that it allows people to keep functioning and to hold onto careers. The downside is that non-sufferers assume that there is no pain to OCD, that you just do those “weird” things.

My psychiatrist once told me that since many doctors don’t understand what OCD really is, they’d sometimes refer patients who didn’t have an issue with OCD at all. He’d have to tell new patients that they didn’t have OCD, they were just really neat. Have you ever had to “undiagnose” someone with OCD?

I’m afraid the opposite is true. I regularly see OCD sufferers who were told that they didn’t have OCD, because they don’t check or wash their hands. Horribly and amazingly, these practitioners know nothing about pure O and other variations of OCD.

You run an annual OCD camping trip. Tell us about it. Why should someone with OCD attend, and what can they expect?

This question could consume more than a few pages. It has been a few years since I’ve run the weekend camping trip. Every year, at the International OCD Foundation’s conference, I do a mini-version of the trip in which I take 200-300 people through whatever city we are in to do exposure. It is hard to describe the magic. Imagine if I asked you to tell me about your favorite movie in five sentences. I might have an idea of the plot, but wouldn’t really be able to have an emotional feel for it. So let me just say that it is magic. People willingly do things they would never believe possible for themselves, everyone is sharing an intense camaraderie and having fun, and, although no one is likely to be cured in two hours, I have seen many people make a small permanent gain that carries over to the next year’s trip.

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

Asking someone like me to give just one piece of advice may be the hardest challenge ever. The most important thing to remember about overcoming and coping with OCD is that the goal is living with uncertainty. It is a scary goal, because it means anything can happen. But it is a condition of humanity that we all live with, even sufferers. In the areas of your lives that are unaffected by OCD, you behave like everyone else. I assume almost everyone reading this does not want to be maimed, paralyzed, and disfigured. Despite this, you get into cars, cabs, and buses where some idiot might ram into you and leave you in a mess. And if this isn’t your problem, you cope with it the “normal” way: You hope you don’t have an accident and your plan is to not cope with it until you’re being crushed under the metal of a crash. Coping with uncertainty means being determined to cope with any outcome, no matter how horrific. Suicide is not an option. Some of you may believe you have situations too horrible to contemplate. Rather than go over them here, let me assure you, we have discussed them all and how to cope with all possibilities. If you doubt me, talk to an OCD expert or read my book. Why would I want to risk living with every possible uncertainty and every possible horrific outcome? Because there is no other choice that will allow joy in your life. In the end, the past is made of nice memories, the future of hopes, and the present is all we really have. We make plans for tomorrow just in case we survive. The result of learning to live with uncertainty is learning to have the joy of the present instead of missing that because you are in OCD land.

Review of Because We Are Bad: OCD and a Girl Lost in Thought

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Because We Are Bad (Canbury Press, May 2016) is an apt title for this charming yet heartbreaking and gripping memoir: Author Lily Bailey thought that she had to be perfect to keep her family safe, and part of being perfect was performing rituals the “right” way every time and keeping a log of everything she’d done wrong and had to atone for later that day. It’s clear how time-consuming and distressing Bailey’s obsessions and compulsions were, and it’s a reminder that no one wants OCD. Who could?

Bailey guides us through years of her life, including her childhood when OCD symptoms first surfaced. Lots of kids have imaginary friends – they’re fun to play with when everyone else is busy, and they’re easy enough to boss around. But in Lily Bailey’s case, her imaginary companion is no friend: It’s OCD, and it’s the bossy one. While Bailey’s relationship with OCD is cleverly woven into the memoir, there were some confusing scenes. Take this passage, for example:

We make our way back to our room and check it’s safe for us to go to sleep. We open our drawers, feeling around the insides with our hands. We worry that there might be someone, or something, hiding inside. We check our wardrobe and under the bunk bed.

The “we” in the above scenario doesn’t refer to two people – Bailey’s talking about her herself and her “friend,” OCD. When I would sit down to read for a reasonably long stretch of time, this strategy worked well for me. Other times, I had to reread a couple times, especially if the scene involved other people, such as her younger sister or a school friend. If this bothers you, hang in there through the whole book. It’s worth it.

Although it didn’t take quite as long for Bailey to be diagnosed as so many of us, her road to recovery was still long and bumpy. She attached too strongly to her therapist and felt she had to please her by being perfect; she was admitted to a terrible psychiatric hospital where doctors changed her medication multiple times with no explanation and group activities were more valued than actual cognitive-behavioral therapy; and after her hospital stay she was often triggered by daily life. You’ll be right there with her through the peaks and valleys – and for a while there are mostly valleys – wanting the best for her.

Bailey’s life turned around when she started to open up about her symptoms to others, and not just family members and therapists. Being open about our disorder can be hard, but it can also be freeing, and Because We Are Bad illustrates this beautifully.

Tuesday Q&A: Kirsten Pagacz

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13166850_1788791191354710_783429034_nKirsten Pagacz seems to lead a dream life — just browse through some of her photos and you’ll see what I mean. Is that Kirsten with Dick Van Dyke?! There she is at Comic Con, having a blast. And she owns the most charming little store! Her life is pretty good now, but it hasn’t always been that way. Like so many of us with OCD, she suffered in silence and confusion for decades before finally being diagnosed, and that enlightenment was all thanks to chance. I’m excited to meet Kirsten later this week, when she’ll be in town to sign copies of her hot-off-the-presses book, Leaving the OCD Circus: Your Big Ticket Out of Having to Control Every Little Thing.

Like so many other people with OCD, you went undiagnosed for decades. How did you finally know where to turn for help and a diagnosis?

My husband Doug and I knew there was something terribly wrong; however, we did not know it was OCD. Actually twenty years ago, I had never even heard those letters strung together; it was not in the common vernacular as it is today. One day, Doug was listening to NPR and a PSA came on talking about obsessive-compulsive disorder. He could hardly wait to tell me about what he heard. It was kind of a “eureka moment.” The PSA closed with something like, “If you or a loved one might be suffering from OCD, there are OCD specialists in your area.” I got the name of an OCD doctor in my community and was fortunate enough to meet with him the same afternoon.

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

I felt relief that the condition had a name, and I felt the biggest relief when my trusted OCD doctor also shared with me that OCD was not my fault and that it was a real medical condition. I was finally diagnosed at 32 years old, after suffering undiagnosed OCD for more than two decades. Part of my recovery and wellness process began with educating myself, reading everything that I could to find about OCD, my perpetrator and killer of joy. One of the first two things that I began doing with my doctor was exposure response prevention (ERP), and cognitive behavior therapy (CBT). I was dedicated to stay the course and dig myself out of the confines of my OCD prison.

Did you tell friends and family about your diagnosis? If so, how did you go about it?

At first, I did not. I felt too vulnerable in the beginning of my mental health journey. I wanted to have some experience under my belt before opening up to others. My first step was expressing myself to my doctor and husband and other folks came later.

13151020_994575027245951_891578085_nYou have a brand-new book on the market! How did you decide to write Leaving the OCD Circus?

I have read a lot of books and met with a lot of doctors and I felt it was time to share what I had learned with other sufferers and their loved ones. I constructed this book — text and pictures — to help other OCD sufferers out of their own constriction. I have been writing poetry and collecting imagery, especially vintage art and ephemera, nearly all my life. Pictures and words that really spoke to me at a core level. Some seemed to capture exactly what I was feeling. Some reminded me of pain, some of hope or the freedom I longed for. I’ve sprinkled them like bread crumbs throughout the book to help guide sufferers out of their OCD prison. Sharing and showing the key that I whittled for myself is intended to inspire others on their journey of wellness.

How did it feel to put everything in writing? Did you have any moments when you second-guessed your decision to put your story out there, and if so, how did you move past them?

I never second-guessed any of it; it was time to expose the monster that I had been secretly trying to hide. In a sense I was spilling the beans on my abuser. I did it with determination to help other people get on to their big happy lives much sooner than I did.

You own a charming retro-inspired gift shop in Howell, Michigan, and the website Retro-a-go-go.com. Does running your own business work better for you and your OCD symptoms than going to an office every day?

Yes, running my own business was the way to go for me. I need a home for my creativity, and it is very important to me that I set the tone of the environment and the culture. Corporate life in general was not for me, and OCD or not, I wanted out of that environment. By no means is owning my own business easy, but it is much more preferred. Retro-a-go-go.com is coming up on 12 years and going strong.

kirstenanddougYou’re married. Do you have any relationship advice for my readers who are either in relationships or who feel that they can never be in an intimate partnership because they have OCD?

Trust, patience, and understanding are keys to a healthy relationship for me. Doug is my best friend and encourages me to be mentally healthy. The healthier I got the more I could clearly see that OCD was affecting other people in my life and I did not like or want that. When I was deep in the throes of OCD more than twenty years ago, I was on the battlefield with OCD, doing everything to be compliant so the “abuser,” OCD, would not pound on me harder for my imperfections. I sort of had no room for anything but me and my OCD. Times have changed, and I have found a way to get on to my happy life. Now it is time to share what I know with others. I feel a real sense of responsibility.

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

OCD is not your fault; it is a real medical condition. One step at a time and make your end goal mental health and wellness. Life is too rich and too wonderful to have it crushed by any illness, especially one that you can do something about. I value my time and my life so much — I cherish it and I keep doing the work that keeps me in the driver’s seat and OCD in the sidecar. OCD might pipe up with “Don’t you want to check the stove one more time?!” and I say, “Not today OCD, not today!”

Tuesday Q&A: David Adam

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This Tuesday we’re hearing from David Adam, author of The Man Who Couldn’t Stop, 2015 recipient of the International OCD Foundation’s Illumination Award, and 2016 OCD Conference keynote speaker.

I’ve had several different themes of obsessions, and many people I know who have OCD do, too. David struggled with just one, a fear that he’d contract HIV/AIDS, and maybe you do, too. It’s another reminder that OCD is crafty and takes on many forms, but no matter what forms it does take, it’s treatable.

Your keynote at the OCD Conference was titled “The Accidental Advocate” — you said you never expected your book would lead to speaking at schools and answering emails from others with OCD. What was your purpose behind writing the book?

To tell what I thought was a great story. The more I researched and read about OCD and the science and the history, the more I got the sense that there was something in it that people would want to read. And then the journalist in me kicked in and said that I wanted to write it all down before someone else did!

The Man Who Couldn’t Stop was a little different from other first-person narratives in that it included an in-depth account of the history and science behind OCD. Why did you want to write about OCD in this way?

That was the stuff that I was most interested in. The personal narrative stuff almost came later in the writing, as a way to stitch all the material together and to provide a narrative structure. Books, I have learned, are all about narrative structure!

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Writing and speaking about your OCD helps people with OCD feel less alone, particularly those who relate to your AIDS-related obsessions. Has being open about it helped you as well? 

Yes, it’s helped with the indirect harm that was caused by previously keeping it (or anything that central to someone’s life) secret. But it hasn’t helped with the actual symptoms of the OCD, and why would it? If only it were that simple.

During your keynote address, you mentioned that while many people have told you you’re brave for sharing your story, you think young people taking on advocacy are the truly brave ones. Why did you say that?

Because to an extent I have little to lose. I am in my 40s, have a wife and children and a job. I think it’s brave to confront a situation like OCD head-on when you know that it could follow you around — when one goes for the job, for instance. And because it takes guts to do so rather than try to pretend it wasn’t as serious as it was, which I did as an excuse not to get help.

Although you didn’t mean to become an advocate yourself, do you have any advice for my readers who want to get into advocacy themselves?

One reason I was hesitant is simply because there are plenty of organizations who do it so well, and who would welcome help I am sure — just Google your local OCD charity or help group!

OCD kept its grip on you for many years, but it wasn’t until after you became a father that you became serious about addressing your obsessions and compulsions head-on. Can you tell us more about that?

I simply didn’t want to do anything that would make my daughter (at the time, now a son also) more likely to follow me and to develop OCD. And after I started to involved my daughter in my own OCD thoughts and rituals, then that was the push I needed.

What do you consider the biggest misconception about OCD?

That’s it’s about behavior. It’s a pathology of thought. And that is what makes it so difficult.

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

Tell someone, a friend or family member. And then realize it’s a medical problem that probably won’t go away without medical help.

Tuesday Q&A: Stuart Ralph

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

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

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

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

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

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

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

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

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

Have any of the stories especially resonated with you? 

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

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

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

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

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

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

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

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

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