Monthly Archives: November 2016

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!

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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.”