Tag Archives: OCD awareness

OCD Hope Drive: Jeff Bell & Liz McIngvale

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Have you wanted to dip your toe into advocacy but aren’t sure JeffBellhow? Jeff Bell, founder of The A2A Alliance and founding partner of Project Hope Exchange, and Liz McIngvale, founder of Peace of Mind Foundation, have an idea for you: Leave a 30-second message of hope for others with OCD. Let’s learn more, beginning with Jeff.

Explain Project Hope Exchange.

Project Hope Exchange is a joint initiative of The A2A Alliance and the nonprofit Life Vest Inside. The goal of Project Hope Exchange is to showcase the power of giving hope, and specifically the notion that we get hope by giving hope. What we have built through Project Hope Exchange is an online platform, coupled with what we call our Hopeline, that allows people to leave 30-second messages of encouragement to others battling an adversity that they themselves are either dealing with currently or have dealt with in the past. So, cancer survivors speaking to other cancer survivors, individuals with OCD speaking to others with OCD, or even more broadly, impacted by OCD.

What we have found is that far too often in life, the missing ingredient in recovery is hope. I know this from my own journey through mental health recovery: At my worst I felt hopeless and desperately needed to find that sense of hope to motivate me to get better. What I learned along the way, sort of by stumbling across this principle, is that we help ourselves by helping others. When I found ways to give hope to other people, I found a great deal of hope in that process. So Project Hope Exchange aims to facilitate that. We collect 30-second audio messages — people can leave them through our Hopeline, or they can visit our website, projecthopeexchange.com — we listen to those messages, we vet them, we edit them to 30 seconds if necessary, and we post them by adversity. Our Project Hope Exchange website allows visitors to drill down by adversity and listen to messages from others dealing with that particular adversity and ideally be inspired to leave their own.

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This month in particular you’re focusing on OCD with the OCD Hope Drive. Can you tell us a little more about that?

We’re excited to be partnering with Liz McIngvale and the great folks at Peace of Mind to pilot the OCD Hope Drive with the goal of collecting 100 messages of hope from individuals impacted by OCD, in 30 days. One of the things that really excites us about this is providing a pathway to advocacy for people who are in the OCD community. So often people will think of us and say, “I’d like to do something in the OCD advocacy world, what do you suggest?” We think that Project Hope Exchange is a great place for people to taste advocacy. They can do it anonymously; they can do it with just their first name, but we hope that it affords them an opportunity to feel what it’s like to share some encouragement through this hope drive. We’d like for it to be a gateway to advocacy through our OCD ally organizations, Peace of Mind, the International OCD Foundation, or Riley’s Wish.

What would you tell someone who says, “I’m not 100 percent recovered, so I don’t feel like I’m equipped to share a message of hope with someone.”

One of the great fallacies about advocacy is that we can only provide hope when we have reached some certain threshold of recovery. I find that when people are looking for hope, what resonates most are people who are in the trenches with them, someone who can provide the perspective of someone who’s still struggling, still trying to find all the answers but is making some progress and is willing to share the hope afforded by that progress. I really think it’s important that we share our successes as we go and inspire people along the way.

And if they leave a message of hope and they see you at the OCD Conference in San Francisco, now they have a talking point to meet you.

I would love, love, love to meet everybody who leaves a message. I would love for them to share with me personally what that experience was like for them and for those who are interested in exploring other ways to get involved in OCD advocacy, I would love to talk with them about that and help do what I can to facilitate that.

Liz McIngvale

And now let’s hear from Liz! Why did you and the Peace of Mind Foundation get involved with the OCD Hope Drive?

I’ve always worked really closely with Jeff, and I’ve loved our partnership and our ability to work together to make a difference for individuals with OCD. Jeff and I spent a lot of time thinking about different ways and opportunities for us to collaborate to make an overall impact in the OCD community. And this just felt like a really great way to be able to do that. It was simple — people could it from their own home and from really anywhere that they were — and it gave other people a chance to give individuals who are really suffering a lot of hope. That’s something that’s really dear to my heart.

What would you say to someone who asks, “How can my 30-second message of hope make a difference?”

It doesn’t matter how long or short the message is. Being willing to just talk to someone, support someone, be empathetic toward someone with a mental illness gives us hope, so being able to give them a message of hope, whether it’s short and quick or long is irrelevant. At the end of the day, you’re taking the time out of your day to remind us that you believe in us, that there’s hope available for us, and that we can and will have a happy life despite this disorder.

Can you speak a little bit about what messages of hope have done for you and your recovery?

For me, it’s knowing that other people have a diagnosis like I do. That in and of itself is super moving and inspiring. But I think more than anything it’s just the fact that there are people out there who care about me. It doesn’t matter who you are, whether we’re related or I know you: Leaving a message of hope to tell me that it will get better, that you’ve gotten better, or that you’re thinking about me — all of those things inspire me to move forward.

And here’s a question for both Liz and Jeff: Since so many people who will leave a message of hope this month have OCD, an anxiety disorder, they may feel really nervous about doing it, even if it’s anonymous. Do you have any tips for someone who might be feeling like “This needs to be perfect or I shouldn’t do it at all?”

Liz: The biggest thing to remember is that there’s no right or wrong, there’s no black and white. It’s just about giving hope, and you can’t do that in a way that’s not a good way. No matter what you say, it’s going to be meaningful, it’s going to be moving, it’s going to be impactful, because you’re taking time out of your day to share some words that will lift someone else up. Don’t worry about it being perfect, because imperfection isn’t the point. If you have done the act of recording a message, you will inspire and move somebody.

Jeff: It can be challenging on many levels to share a story, even in 30 seconds. Let me start with one of the most challenging components of that, and that’s that “I’m not worthy of providing hope.” We touched on that already in terms of the idea that one needs to be fully recovered before I can share hope. The mere fact that you are willing to put yourself out there, even anonymously, and make an attempt to help other people, that is such a courageous thing to do that that courage alone will inspire people. I want potential participants in the hope drive to know that just stepping out and leaving that message is hugely courageous and will be perceived as such by other people who listen to that message. The second thing is those of us with OCD like to make the world very black and white, either I’m gonna leave the perfect message or it’s gonna be really, really bad. There’s no such thing as a perfect message. The message we want from you, an OCD sufferer, someone impacted by OCD, is simply a heartfelt acknowledgment that this is  difficult but that it’s possible to move forward with recovery and support of others who are dealing with OCD. The third thing from a very practical aspect is that we try to make the interface as user-friendly as possible, so you can do as many different takes as you’d like with your message. You can call, you can listen back to your message, if you don’t like it you can push a button and re-record it and then re-re-record it and re-re-record it, and we only get that message that you decide you’re ready to send to us.

A couple of closing thoughts: If someone is feeling apprehensive about worthiness or ability to leave a message I would encourage them to leave that first message anonymously, give us a couple initials, whatever is comfortable for you, but give yourself a chance to see what it’s like. Push your comfort zone and leave a message anonymously if that’s easier for you, but give yourself the opportunity to see what’s possible when you step into advocacy. Listen to other people’s messages, get an idea of what other people are sharing. We hope that through this drive we will not only collect 100 messages that can inspire other people but help 100 people come to appreciate just how motivating it is to give other people hope.

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: Kat Hashway

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KatProfile

Welcome to Tuesday Q&A, dear readers!

Last month at the OCD Conference in Chicago, I ran into a family from my home state, a mother and her daughter who has OCD. As her mom and I chatted, this 9-year-old girl grew antsy—her mom gave me a look and said, “She saw a YouTube vlogger earlier, and we’re trying to track her down.”

That celebrity vlogger was Kat! She’s spreading awareness on her channel, ShalomAleichem {Mental Health Vlogs}, and gaining fans as she does it. It’s so important for kids and teens to see people their age have OCD, too, and are okay talking about it.

You’re 19 years old, and although I hesitate to say you’re lucky to already know you have OCD, it’s really common for people to go years, even decades, before they’re diagnosed. When did you first start experiencing OCD symptoms?

So, I was an anxious child for as long as I can remember, but I didn’t experience severe OCD symptoms until I was 15. Before then, my anxiety symptoms were more like generalized anxiety disorder (GAD). Although, after being diagnosed with OCD, I can look back and see many symptoms that were classic OCD symptoms. I understand why you wouldn’t want to say I’m “lucky to know” I have OCD, but I do feel incredibly lucky that I found out I had OCD and got treatment so fast. At the time, I had no idea how long it took most people to get a diagnosis and treatment. To me, one month for a diagnosis and six months for treatment was way too long. It was long enough to make a significant impact on my life, so I guess that’s why.

How long after the onset of symptoms were you diagnosed? Was it fairly obvious to your parents that something was going on?

I started experiencing severe harm OCD around August 2012. I knew something was wrong because I never experienced anything like those thoughts before! However, my parents didn’t know anything was wrong at first. Eventually my distress became known to them because I would get so upset every time I got an intrusive thought. I used to cry and tell my mom I didn’t want to live if it meant having these thoughts. They knew something was seriously wrong, but they didn’t know what. There was no way I would have told them the content of the thoughts either.

When I first started experiencing severe OCD symptoms, I had a therapist for depression and anxiety, but I was terrified to tell her about these thoughts. I really thought I was crazy, or schizophrenic. I never once thought it could have been OCD. After a month of severe symptoms, I realized I couldn’t go on like this and decided to tell my therapist about what I was experiencing. She didn’t know what it was either. Long story short, I ended up inpatient in a mental hospital and that’s where I was diagnosed with OCD (and I’m so thankful for that!). After discharge from the hospital, I saw someone who claimed to be a CBT therapist, who turned out to not be a CBT therapist and didn’t know how to treat OCD. It took six months for me to get into proper CBT with exposure and response prevention, in the form of an OCD intensive outpatient program at the hospital I had been inpatient at. That’s when things started turning around.

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You’re already so active in spreading awareness about OCD, with your own YouTube channel, ShalomAleichem {Mental Health Vlogs}. How did you decide you wanted to help others in this way?

Having to wait six months for treatment and experiencing the lack of knowledge on OCD by professionals was what first made me want to raise awareness. When I learned it can often take decades to find treatment, I wanted to help even more. No one deserves to have decades of hiding with this illness! I also recalled going online to see if anyone else had symptoms like I did and hardly finding anything. (Although, that’s probably when I found you! Yay!) Much of what I did find gave bad advice on how to treat the thoughts. After the end of my stay in the intensive outpatient program, I was very comfortable with practicing ERP. I knew the key to getting rid of the thoughts. So when I went online for support a year later, I thought, “Wouldn’t it be great to have a video blogger who made ‘classic vlogging style’ videos, with content that supported recovery from OCD? Something that would appeal to people like the kids and adolescents who I met in the program?” Then I realized, hey, I could do that! By that point I did find a few vloggers and bloggers who spoke about lesser-known types of OCD, but it seemed most didn’t appeal to young people, and many of those that did appeal to young people were still giving bad advice (by “bad advice” I mean using avoidance, distraction, and accommodating compulsions).

But that’s not all. You also have a blog called Do An Exposure! As someone who’s shared personal details of my own journey with OCD—and usually tearfully—I imagine that just doing your vlog and blog feel like exposures sometime. Has sharing your story helped you on your path to recovery?

Short answer, yes. It totally has. When I couldn’t tell my intrusive thoughts to my therapists, I was able to say them to strangers online. It served as a great exposure opportunity. There were times where I was very uncomfortable, but I did it anyway because I knew that others who had those symptoms needed to hear it. I wanted to be what I was looking for when I was first diagnosed. Maybe I would have been diagnosed and got treatment sooner if I had known I was dealing with a treatable illness, I wasn’t just going “crazy.” Now I feel so much more comfortable talking about my thoughts in all situations—depending on the circumstances, of course.

Any advice for someone who wants to share their story, whether through YouTube videos, a blog, or another medium?

I’m having trouble thinking of anything besides just do it. The more we talk about the taboo topics, not just of taboo obsessions but OCD in general, the more we break the stigma around mental illness. The more we break stigma, the more people who need help get help. The more people who need support get support. And the more people who don’t understand, get a chance to understand what life is really like for people who have mental illness and OCD. It’s honestly life changing to hear people tell you because of you, they have hope or feel less alone. Advocating has probably had more of an impact on me than it’s had on other people. If you’re scared to do it for someone else, do it for you. As a chance to expose or track your recovery progress. I’m convinced that when anyone shares their story, it helps people.

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So you’ve put yourself out there and have lots of adoring fans. Have you sat down in more intimate settings with friends and family to talk about your OCD? How did you tell loved ones about what was going on?

It’s funny because I don’t see myself as having adoring fans. But at OCD events, I usually have a few people who come up to me and say hi. The little girl was probably the cutest experience I’ve had yet!

I’m very guilty of avoiding vulnerability, which is shocking, I know. But because of that, I usually don’t talk about the specifics of my OCD in person unless someone is curious. The moment I sort of “came out” to my real life friends and family about having OCD happened on Facebook. It was after I went to my OCD program’s reunion and felt inspired by the recovery of my fellow patients. So I posted my story, disguised as an inspirational message to cover the vulnerability, and I got only positive responses. That’s the thing about confiding in people, we usually anticipate it to be worse than it actually is.

Let’s face it, all OCD symptoms are pretty terrible. But are there any in particular that you’ve had an especially hard time with?

The symptoms I had the hardest time with were the ones that brought my faith and morals into the mix. I don’t count harm thoughts because they morphed into scrupulosity shortly after my diagnosis. However, the Scrupulosity was a huge issue and barrier to treatment. OCD was so intertwined in my faith that I couldn’t tell the voice of God from the voice of OCD, and that was terrifying. It also led to me doing every compulsion because how could I say no to “God”? It really debilitated me to the point where I was essentially homebound before I went to the the OCD program. Eventually though, once I was able to separate my OCD from my God and treat OCD as an illness and not a spiritual problem, I was able to get better.

The second one that has given me a very hard time is the sexual obsessions. They have mostly mental compulsions and are almost a spin-off of the harm obsessions. They both have the same pattern of focusing on a few people and avoidance being the main ritual. With sexual obsessions, it’s taken a lot of exposure and response prevention to get to this point. Before I couldn’t talk about them and every trigger caused extreme anxiety. Now, most days the thoughts come in as just an annoyance. However, I’m still doing exposures for this and have some cognitive distortions to work through. Just ask my therapist! The amount of times she’s had to tell me “thoughts are just thoughts” is ridiculous.

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You’re pretty open about how important your faith is to you. How does it factor into your journey with OCD?

My faith has been something solid in my life since I first struggled with depression at age 12. OCD was definitely a challenge to it since OCD got so intertwined into my faith. However, I can’t help but see it as proof everything happens for a reason. Going through OCD feels like going through Hell, but it’s brought me to a time in my life where I’m truly happy. I believe God wants us to be brave. And through therapy I learned how to be brave in the midst of fear, when anxiety has inhibited me most of my life before now. Because of my struggle, I learned a lot about my faith and about myself. Before OCD, I would have been content with faulty theology that helped my OCD grow, now I know better. It may sound really silly and that’s okay, but I think God was guiding me through it all.

Your Weird Thoughts Thursday on Twitter is such a great idea—any weird thoughts that have really stood out to you?

I think my favorite thought I’ve heard was from last Thursday, “If I post my #WeirdThoughtsThursday, it will come true!” Seeing that people are using Weird Thoughts Thursday as an exposure as well as support makes me so happy! On the support side, I think my favorite part of Weird Thoughts Thursday is when someone says a “weird” OCD thought and everyone replies saying, “I’ve had that too!”

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

My biggest advice to someone who has OCD would be, don’t wait to get help because you’re afraid. Generally speaking, the sooner you get help, the easier it is to recover. I know it’s hard, but it’s so worth it! Don’t let anxiety tell you what to do, anxiety is just a big bully. And how do you get rid of bullies? Ignore them! Don’t play into their game. And, you know, get help from authorities or therapists.

Tuesday Q&A: Sean Shinnock

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SeanArtIt’s the Tuesday of OCD Conference week, and I’m excited to be hosting someone you’ll have a chance to meet, learn from, and be inspired by this weekend. Sean has taken huge leaps in his recovery in the past few years, moving out of his dad’s house to residential treatment in Boston to living on his own and taking life by the horns—working full-time, pursuing art, and not taking anything for granted. I love his take on mindfulness, self-compassion, and personal growth, and I think you will, too.

Like so many other people with OCD, it took years before you realized what was really going on. You were diagnosed in 2012, but you’d had symptoms long before that. How far back do you remember having obsessions?

I remember having obsessions all the way back to when I was 10 years old, maybe younger. I worried constantly about my mother’s health and global warming!

What led you to finally seek help and get a diagnosis?

The spring after I turned 32, I had gotten to the point where I was everything but catatonic. I couldn’t leave my chair, my room, my house. I would stay still for hours locked in obsessions, ritualizing to get out of them. During any periods of rational thought or normalcy (I jokingly called these times my “awakenings,” a term I took from a Robin Williams movie I enjoy), I would either ponder suicide or fantasize about finding a magic cure. I finally succumbed to my very really desire to live, and asked my dad for help. I didn’t know what to do, but I knew that I  had to do something, anything. We eventually made an appointment for an intensive two-day neuropsych evaluation at the Lindner Center of Hope near Cincinnati, Ohio, about 120 miles away.

Once you knew it was OCD, how did you feel? Were you comfortable sharing your diagnosis with loved ones?

Honestly, I didn’t have much of a reaction,  I had done research and knew what OCD was and even kinda self-diagnosed myself in high school after watching a daytime talk show from the ’90s with a kid on it with OCD. What was really going through my head was: A) OK, now what, I have an official diagnosis, there is no way I can afford therapy, and it probably won’t work anyway.  B) I hope my dad now understands that all my failures weren’t all my fault and C) They missed something, I have something worse, I’m psychotic, they don’t know what is really wrong with me (this was my OCD talking).

I am fortunate with the friends and family I had when I was first diagnosed, so talking to my close loved ones was not a problem and I received a lot of support from them. It was the community outside my inner circle that I always felt awkward or shameful around. As my confidence grew and as I got better and better, I became more at ease talking about my struggles with more and more people. I really do like the chance to compassionately teach someone about OCD and mental health awareness if they are having a hard time understanding it. 

SeanBoston

You eventually went to residential treatment at McLean in Boston. How did you decide to take this step?

I had told myself when I first started down my path of healing, that I would do whatever it takes to get better. So there was no way I was going to take a recommendation from an OCD expert home with me and just sit on it. I was really open to any suggestions of treatment and had mentally prepared myself for treatment. With the initial formal diagnosis from Dr. Charles Brady at the Lindner Center, we were told that my case was so severe that even the Lindner Center’s own OCD residential program was probably not enough and that I would most likely need a more intensive, longer stay at a larger hospital. When my dad and I were suggested some programs that were known nationally, we began to do some research. We finally came to the decision for me to attend the OCDI at McLean Hospital in Boston, Massachusetts. Again, for me, the decision to get intensive treatment was not all that hard to make. I was really scared, I was filled with uncertainties as you could probably guess, but I had been through so much, I was at my worst, I was willing to do anything to get my life back.

Residential treatment can be really beneficial for some people, but it can also be difficult to transition back to daily life. How did you maintain the progress you’d made after you left McLean?

One of the hardest things that I have had to do, and I assume that this is hard for other “warriors” (term I use for those on the path of healing), is planning to discharge from a residential facility (sometimes called aftercare work), and then transitioning from residential life to the realities of the real world. The recipe for maintaining progress is a very complicated, multi-layered, and subjective experience for each resident. I attended the OCDI twice, once in 2012 and then again for the winter of 2014-15.

Each stay, in my eyes, was completely successful, and changed my life in its own unique way. The first stay, my team and I really focused on getting myself mobile again by attacking the obvious, more visible rituals I was struggling with. The second stay, my team really got me acquainted with acceptance and commitment therapy (ACT) and mindfulness on a more personal level and I got a chance to do a lot more expressive art therapy. By doing this, I was able to give more to the existential, big picture and personality-driven obsessions that I was really struggling with at my core. So, with that being said, I had two different experiences transitioning to the real world. The first time I left residential treatment I had come a long way in my therapy. However, due to not having the proper resources in my hometown and having some life curve balls thrown at me, the issues that my team and I were not able to address during the first stay escalated and got worse.

The real story, though, is how I handled the transition my second time around. This time, I was dead set on doing well outside of treatment and I set myself up to do so. In addition to the exposure and response prevention (ERP), ACT, and mindfulness therapy I received at the OCDI, I really started working on my systematic problems with “perfectionism” and self-confidence. I began to view my thoughts in different ways and I started to allow myself to become less rigid in how I achieved my goals. By ditching the “fixed” mindset I had carried with me most of my life, and by developing a “growth” mindset, I was able to keep the momentum I had built during therapy and continue to heal while navigating the peaks and valleys of real life. In my case, my ultimate exposure was indeed life. So, in order to really transition well and grow the way that I needed to, I had to make some tough decisions. I had to expose myself to taking risks and living life on my own. I knew that the only way that I was going to grow and become wise was to have the life experiences therapy had prepared me for. It made no sense to get therapy and then avoid my fears by going back to the same situation that I was in.

So, the last two weeks of my residential stay, I started to look for people who wanted to sub-lease their apartment in the dead of winter. I applied to over 20 places for employment, and I was adamant about keeping my behavioral therapist that had helped me so much. The therapy part was very important to me because I had grown tired of dealing with BTs who were sub-par or who did not understand my case. I felt I deserved better, and this was the only area I stayed pretty rigid on. So, by the last day of my treatment I had found an apartment, I got a low-level part-time job, and I had my therapist.

On March 1, 2015, I had officially moved from Ohio to Boston. In order to make this transition work, I decided that I had to make promises to myself and then actually keep them. I knew that I wanted to fill my calendar and stay busy because I knew that if I was bored or static I could start getting back into my head. I promised myself to work 40 hours a week, and I did. I promised myself I wouldn’t miss any therapy appointments, and I didn’t. I promised myself I would volunteer, and I did, and then I promised myself I would take my art to new levels, and I did. I kept pushing myself to do the things that were valuable to me and that would be productive in my life. I quit drinking and I started to save my money. I attended meet-ups and even ran a figurative art night. I attempted art projects that I would have initially avoided, and I continually set daily and weekly goals for myself. In general, I knew that I had big-picture ideas, but the only way that I was going achieve anything was to take small baby steps and build a path of confidence filled with small victories and lessons learned by mistakes. By adhering to this philosophy I was able to overcome setbacks more easily and calm down quicker when I panicked about not being able to handle what I had gotten myself into. As I progressed, I noticed that the valleys became less deep and the peaks were more attainable. Transitioning can be tough, but by continuing to hold yourself accountable, the life you want can be within your reach. I would like to add, though, that my transition was really made possible by my support team, which includes my family, close friends, and therapists. I have been very fortunate with that. 

TeddyBearSean

You once told me that ERP is great, but you found ACT to be even more helpful. Tell us more about that. How does ACT work?

ERP really helped throughout the entirety of my therapy; however, what has really made a significant impact on the core of my thought processes has been ACT. ACT is a therapeutic model based on mindfulness and Eastern philosophies, and it has really challenged me to change the perspectives I’ve had on my thoughts. Instead of struggling with my thoughts and negative emotions I learned that I had the power to give them meaning. I learned that I could have compassion for these thoughts and view them as exactly what they were, just thoughts entering and exiting my mind. I started to allow them space by using a technique called “expansion” and I started to not judge them by ceasing to give them attention. ACT has really helped with my own self-confidence and has really allowed me to make strides in my own personal growth.   

We’re presenting together at the OCD Conference, on a panel about taboo intrusive thoughts. I’ve had other types of obsessions, but I found the taboo thoughts the hardest to get over. What can you tell us about your intrusive thoughts and how you’ve handled them?

I have struggled with intrusive thoughts my entire life and they probably started before I was even a teenager. The content of my intrusive thoughts has changed and evolved throughout the years but has primarily been centered around harm, sexual deviance, homosexuality, scrupulosity, and fears that I may be a sociopath. For twenty-two years, as you may have guessed, I handled the thoughts the only way I knew how, and that was to perform physical and mental rituals or to just flat out avoid certain situations. But as I have gone through therapy, I have been able to view my thoughts in a different way: I am not my thoughts. I have the power to give my thoughts meaning. Everyone has these thoughts and because I’m human, I have these thoughts. What also has had a large impact on me is being part of a community that has had the courage to stand up and talk about their experiences with this disorder, which, in turn, has allowed me to feel welcome and warm and supported and above all else, not alone.  

Monster

You’re holding an art event at the OCD Conference,on Friday night, called Draw Your Monster. Why should conference attendees come to this activity? What can they expect?

Draw Your Monster will be a fun activity that you can just drop in on and come and go as you please. It is 7 p.m.-8:30 p.m. on Friday night in the Denver/Houston/Kansas City rooms. It is an art activity based on some of the principles I love to talk about, ACT and mindfulness. It is all about acceptance and the commitment to change your perspective on fear with a fun and unique twist. There will be fun stickers to take home with you and a small raffle toward the end. You will receive your own monster lanyard, and if you choose to, can challenge yourself to wear it the rest of the conference. I really wanted to do something creative and expressive, and I wanted attendees to have fun while exposing themselves to their unwanted thoughts by drawing them as monsters! I think expressive art therapy is critical in making people look at the things they are struggling with in new and creative ways. Someone who may not know how to express themselves verbally can now take the chance to overcome fears through art and mindfulness-based experiences. It is so critical for people to learn to overcome their fears by allowing themselves to grow and heal in a way that won’t exhaust them the way that mindlessly struggling with them will. I think that “Draw Your Monster” can be a catalyst for people to start to change their perspectives in a compassionate way. Think: “I will allow my monster to take a seat on my bus; however, I am the bus driver and I will decide where we go.”

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

Remember your “Big Picture.” Embrace uncertainty. Open your mind to the “grays” in life as there is no back and white. Remember that you are not alone. Don’t be afraid to ask for help. Be open with your thoughts and emotions. Remember to treat yourself well. Notice that you are human. Do research and ask questions. Force yourself to stay present. Be compassionate. Take risks. Accept love.

That obviously isn’t just one, but all need to be said.

15 Things People with OCD Want You to Know

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I love talking about OCD, and it’s always interesting to see how my words are used in the final product! It’s an exercise in letting go and giving control to someone else. This time my interview—as well as several others from both people with OCD and those who treat it—was worked into a list of 15 Things People with OCD Want You to Know.

What do you think? Would you have added anything? Removed anything? Expanded on anything?

Tuesday Q&A: Jenn Coward

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image4Tuesday, Tuesday, Tuesday! It’s become one of my favorite days of the week. And this week’s guest is one of my favorite OCD awareness advocates, Jenn Coward. If I haven’t convinced you already how wonderful the annual OCD Conference is, maybe this interview will finally seal the deal. It’s a great way to make friends, learn about treatment, and feel comforted knowing you’re not alone and don’t have to explain what OCD is or clear up any misconceptions.

Jeff Bell introduced me to Jenn on the first night of the conference, and we hit it off immediately.

When we met you told me the funniest story about one of your compulsions, avoiding stepping on sidewalk cracks, which you were still struggling with at the OCD Conference in 2012. When you ran into someone at the 2014 conference, she said, in front of several other people, “I’m so glad you got over your crack problem!” Of course, the “crack problem” wasn’t a laughing matter when you were struggling with it. How did you manage to stop avoiding sidewalk cracks?

It is definitely a story I won’t forget. I was attending the 2012 International OCD Foundation Conference in Chicago and a couple of new friends I met asked me about some of my compulsions. I had rarely discussed openly avoiding sidewalk cracks because over the years I managed to become really good at avoiding sidewalk cracks and making it look like I wasn’t trying to avoid them. Since we were honestly discussing our compulsions, I decided I should talk about it. As good as I had become at making it look like I wasn’t avoiding the cracks, I would avoid places if the sidewalks or tiles inside malls had a lot of cracks. I was missing out on things because of my fear and compulsion.

The conference and friends I had made really inspired me to work hard in ERP and challenge my fears. I met so many people who had made such progress and were successfully overcoming their compulsions, I wanted to as well. When I got home from the conference I read a few books including Jeff Bell’s When in Doubt, Make Belief and Shannon Shy’s It’ll Be OK: How I Kept Obsessive Compulsive Disorder (OCD) From Ruining My Life. These books had some great strategies I wanted to try. I started slowly with every day trying to step on at least one crack. It was really difficult because I immediately wanted to go back and fix it by retracing my steps and not stepping on the crack. The first few times, the anxiety and bad thoughts were unbearable and I felt like giving up. After the first few weeks, though, the anxiety started to not be so strong. It took almost three months before I could move on and step on two cracks a day, but I was making progress that I could see and it gave me confidence to keep going. Eight months later, I was consistently stepping on cracks and the anxiety and bad thoughts were hardly there. I knew I was winning this war on OCD and it made me so happy.

Can you tell us why you wouldn’t step on cracks?

I’m not really sure how this compulsion started but I was walking to work one day when my OCD symptoms were starting to get worse and really take over my life. I remember stepping on a crack in the sidewalk and all of a sudden an image popped into my head of my mom being in a horrible car accident. It scared me so much that I just stopped walking and stood there for a minute trying to figure out why I was thinking of this. The anxiety started to build up and for some reason this thought about needing to avoid sidewalk cracks came to mind. Over the course of the next few days, I noticed if I stepped on any cracks, I would get these mental images of someone in my family being harmed and my mind kept telling me it was my fault, I was causing this to happen. The only thing that helped decrease the anxiety and keep these thoughts from overpowering me was this constant voice in my head telling me to avoid the sidewalk cracks. If I avoided the cracks, my family would be okay. Before long I was avoiding every crack, and if I accidentally stepped on a crack, I had to go back to the very beginning, meaning wherever I was walking from, I had to go back and walk the “correct” way—not on any cracks—so my family would be okay. A few times I tried to ignore the anxiety and bad thoughts, but they became so frightening it was just easier to give in to the compulsion so I could have relief from the anxiety.

You went on Dr. Jonathan Grayson’s Virtual Camping Trip. Why did you go so out of your comfort zone?

A lot of people I met at the 2012 conference suggested it to me. I wasn’t going to go because it sounded really uncomfortable, but many of my new friends I had just met were doing it so I figured I would go and see what it was about. It was the most terrifying and exhilarating ERP experience I had ever had at that time. Here we were walking around in this big group around downtown Chicago at night, and whatever Dr. Grayson told us to do, we did. At the time it made no sense to me that I would do these things–kick car tires, yell at cars to “crash and burn,” or play in a dumpster–but here I was doing it. After the fact I think I realized I did it because we were in such a big group so it felt more comfortable and Dr. Grayson didn’t give us time to stop and think through what he was telling us to do. This virtual camping trip made me realize that ERP was really going to be what helped me get over my compulsions.

How did you realize you had OCD? For me it wasn’t at all obvious and it took several years before I was diagnosed.

For a number of years I didn’t know I had OCD either. I now realize I first had the onset of symptoms in my pre-teen years. It wasn’t until I was almost fourteen, though, that I really started to experience a lot of OCD thoughts that I developed compulsions to deal with. I kept it all to myself because I was scared and confused. I didn’t understand why I was having these thoughts and why I needed to perform these compulsions. I was scared to tell anyone because I couldn’t understand myself what was going on. I really tried to perform my rituals in secret so my family wouldn’t see what I was doing. I would be up really late at night performing these compulsions and I couldn’t go to bed until I had done them perfectly. Over time I was getting really stressed by the growing list of compulsions I had to perform. I finally confided in a friend at school one day when it was all becoming too much. I started to explain to her my thoughts and compulsions. I was so surprised to hear her tell me she thought she knew what I may have and told me to go home and look up obsessive-compulsive disorder. At the time I didn’t know she had been living with OCD for a number of years. I went home that night and looked it up in this big medical journal we had, and there were three pages on OCD. I remember sitting there reading it and I started to cry from relief. The obsessions and compulsions it was describing were what I was experiencing. I realized it was time to talk to my parents and look into going to see my doctor.

JennandShannon

Jenn with Shannon Shy

Can you share some of your other obsessions and compulsions? What steps did you take to get some control over them?

When I had a relapse four and a half years ago, my obsessions and compulsions were different from when I was first diagnosed as a teenager. Everything had a place and it always had to be in that place. If anyone moved something, even a tiny bit, I would know and I had to fix it. Since I had a fear of harming people, I was scared to drive and never got my license because of this.

One of the most difficult obsessions that I had besides sidewalk cracks was a fear of certain numbers: Six, twelve, any multiple of those numbers (24, 36, etc.), or any combination of numbers that added to six or twelve. I was paralyzed by this fear of numbers. Everything I did, I had to make sure it didn’t happen at one of these times or dates. For example, if I needed to wash my hands but it was 1:06 p.m., I would wait until 1:07 p.m.

ERP was how I eventually got control over these compulsions. I started small with doing things like intentionally moving something like a magazine so it wasn’t in its right place and I would try and go as long as possible before I had to fix it. At first it was only a minute, but over months of constantly working on this compulsion, I could go hours without having to move it back to its right place and eventually I could have multiple things out of place at one time and my anxiety was still decreasing. This is how I got control over all my compulsions.

Some fears and compulsions took a long time to get control over like my number phobia, but I approached them all the same way. I can honestly say my number phobia took almost two years for me to get control over.

I know you’ve made huge leaps in recovery in the past few years, and you didn’t waste any time before getting into advocacy in your community. Tell us about your awareness-spreading efforts and how you got into them.

I’m currently a guest speaker for a high school mental health awareness program that is called Talking About Mental Illness (TAMI). It’s a three-day program for grade 11 students. A mental health nurse comes in and educates students about different types of mental illnesses, the symptoms, and where they can go locally to get help. I share my personal experience with OCD. I also speak at our local college to many different programs, specifically the ones that have a mental health element (nursing, child and youth worker, personal support worker.) I’ve also done a lot of local media for OCD Awareness Week and Bell Let’s Talk Day, a mental health awareness day in Canada.

I got into awareness spreading because I wanted to make a difference and turn what I had been through into something positive and meaningful. When I had learned about Jeff Bell’s Adversity 2 Advocacy Alliance and what they did, it made sense to me. So many of the people I met who were better became advocates and shared their own personal story. It seemed to be so therapeutic for them and they were helping others by sharing their story. After my relapse, I remember being in a very dark place, feeling hopeless. I was sure I would never get better. Then I read a book that changed my life. It was Jeff Bell’s memoir, Rewind, Replay, Repeat. I remember sitting there when I finished reading it and thinking there was hope. His book provided me that hope when I needed it most. I realized if his book could do this for me, sharing my experience could help someone else.

image1You’ve been planning a rather large event called Stand Up to Stigma on April 24. Tell us more about that.

Stand Up To Stigma is a fund-raiser and mental health awareness night. I felt like our community needed an event where we could come together and have an honest, open conversation about mental health. I wanted to address the stigma that still surrounds mental illness but more importantly have people within our community share their story of living with mental illness so others could see they weren’t alone, there was hope, they could get better. Specifically youth mental youth is a big topic for our event. The statistics are frightening. Three out of four children and youth with a mental health problem in Canada will not receive treatment. Three times as many youth (15 to 24 years old) die by suicide than by all forms of cancer combined. We are failing our youth and the only way we can address it is by starting the conversation. All money raised will be going to a Canadian mental health charity called Partners for Mental Health.

We met at the OCD Conference in 2014, but it wasn’t your first time there, and it certainly won’t be the last. What keeps you coming back year after year?

It is the most fun I have all year. There is nothing quite like being with hundreds of other people who understand you. I have made great friends and every year there are workshops where I learn so much more about living with OCD. I know I would not have recovered as well from my relapse if it wasn’t for these conferences. They have provided me with so many tools and friendships to get better.

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

Don’t give up, there’s hope. When it seems that getting better is impossible, believe that it is possible, because it is.

Tuesday Q&A: Jessica Bishop

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Welcome to the first of a new series I’m launching today, Tuesday Q&A! The “Tue” in “Tuesday” kinda, sorta rhymes with “Q,” doesn’t it? (Humor me.) Over the past few years, I’ve met some pretty amazing and inspirational people in the OCD community, and I want to share some of their stories with you.

Jessica

Let’s kick it off with Jessica Bishop, a 24-year-old who has OCD—and who’s working to spread awareness and give others hope.

Jess, you’re such an inspiration. I chose you for my first Q&A because you recently completed residential treatment at McLean Hospital in Boston and are now doing well back in the “real world.” How did you realize this more intensive type of treatment was right for you? Did you try other treatments first?

I realized that this type of treatment was right for me because I was attending therapy three times a week, which did not help. I then ended up in a few other programs before realizing I needed help in order to function.

You were there from August 26 to November 9. Were you nervous about checking in to McLean for an extended stay?

I was actually very excited. I wasn’t nervous because I was ready to get help and get my life back, understand what was going on and how to manage it.

Describe a typical day at McLean.

A typical day at McLean OCDI unit starts at 8:30 a.m., on the dot. Morning group and goal setting starts; appointments and symptom-specific groups along with daily coached ERP sessions are from 10 to 12. The days were hard, long, and tiring. But I kept pushing myself through and saw positive outcomes with the help and support from my peers, my behavioral therapist, and my family therapist, and the guidance from amazing counselors.

Can you share some of your obsessions and compulsions with us? Was there one that was harder to deal with than others?

Some of my OCD types are contamination, emotional contamination, perfectionism, iteration fears, health anxiety, and intrusive thoughts. Many of my rituals involve checking, counting, reassurance seeking, and asking. My hardest types are irrational fears of glass ketchup bottles and bars of soap. I still believe that the ketchup is poison and it will attack me. When it comes to bars of soap it has nothing to do with germs or dirt, really; my OCD tells me that it’s washing away people’s positive qualities and turning them bad, even if I am just looking at it.

Living among so many people who actually understand OCD must have been so comforting, but the main goal was to re-enter your regular life and apply what you learned. How was the transition for you?

Being at OCDI was very helpful being surrounded by others who understood me and even had the same multiple OCD symptoms. The transition out for me was not as easy as I was hoping; it took a while to adjust and still some days are easier than others. But I have the tools that I try to utilize and put to work on a daily basis according to my values.

TherapyDog

McLean has therapy dogs. Tell us more about them and how they helped.

The therapy dogs made a huge impact by providing positive support by playing and letting us pet them, give them treats, and take them for walks. They helped me the most when I was feeling sad or upset and their presence calmed me down. Pets are one of the best types of therapy; they are so innocent and cute!

What advice do you have for anyone who’s considering entering a residential treatment program?

My best advice would be to trust your treatment team! Don’t leave anything out and fight through the hardest days as those are the best days to reward yourself with learning, achieving, and competing goals.

You recently started a blog. What inspired you to start writing about your experiences with OCD?

I did just start a blog. I am inspired to help others understand the true meaning of being “so OCD” and to help end the stigma.

What’s next for you? Do you have long-term plans for advocacy?

I don’t know what is next for me at this time. I am currently working on treatment and ERP still with my outpatient team and I am finishing college to get my bachelor degree. I plan to continue to further my education and involvement with OCD, mental health, and expressive therapy.

If you could share just one piece of advice with someone who’s struggling with OCD, what would it be?

The best advice I would have to give out would be to remind yourself that OCD just wants power, it likes to lie and take over. Don’t let it—use mindfulness and grounding techniques to get by, take your thoughts, emotions, and feelings with you wherever you go, sit with them, and continue on. At the end of the day it doesn’t matter how you felt, but how you lived. And there is help and there is hope!

Can You Laugh About Your OCD?

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Have you seen this clip of Maria Bamford and Lena Dunham talking about their OCD symptoms? Maybe it’s because I follow a lot of pages related to OCD, but I feel like I keep running across it. At any rate, as uncomfortable as it can be to watch something like this, I’m glad these two women were honest about their obsessions and compulsions, and that Lena specifically pointed out that hers weren’t as simple as needing an organized closet.

And maybe it’s because OCD and I are so intimate with each other, but I didn’t actually laugh at this clip–even though it’s been described as hilarious. I think it’s important to have a sense of humor about our hardships, but I’m just not there. When I talk in front of a group about my worst obsessions and depression, I still get choked up. And I noticed that Lena and Maria weren’t very lighthearted about it all, either.

How about you? Are you at a place in recovery where you can laugh about your struggles? What if someone else laughed? I’ll say this: I am at a point where I realize how ridiculous some of my fears were. But I haven’t forgotten how they made me feel.

Here’s to hoping we all get to the point where we can have a good laugh. Less pain and embarrassment is a great start.

 

Dealing with Misconceptions on the Internet

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I can be really outspoken on divisive issues. I often find myself way too caught up in the comments section of some article about a politician or sparring with someone on Facebook over sexual inequality (and my husband always says, “Why do you do this to yourself? You’re never going to change this person’s mind.”). But I get awfully shy when it comes to standing up to ignorant comments about OCD.

Of course I have this blog and my book and my Facebook page and my Twitter account. I’m trying to spread awareness all over the place, and it’s actually one of my life goals to get people to stop using “OCD” as an adjective meaning “quirky” or “meticulous.”

The trouble is when someone’s already said something that only adds to the confusion about what OCD really is: I clam up. See what I mean in this blog post at the International OCD Foundation site, and let me know how you handle misinformation and misconceptions when you run across them.