Category Archives: Media

Pure O in the News

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Have I mentioned how excited I am about the new website IntrusiveThoughts.org? Well, I am! Excited, that is. Ten years ago when I was diagnosed there wasn’t a ton of information out there about taboo intrusive thoughts, which is what I was struggling mightily with. Lee Baer’s book The Imp of the Mind was a tremendous help, of course, but there wasn’t much else specifically geared toward those of us with horrifying obsessions that we assume speak to our character.

And I’m not the only one who’s super stoked about the site, either. Several articles have been published about it — in some pretty mainstream publications, too, which gives me so much hope for spreading awareness of what OCD really is and dispelling some common misconceptions.

I wrote about the site on Lee Baer’s blog, OCD and Families, and I was interviewed for a piece published on Fusion. Will I ever tire of talking about OCD? Maybe when no one’s confused anymore.

Tuesday Q&A: Jeff Szymanski

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JeffIsSittingI know what you’re thinking: How do you pronounce that name? As far as I can tell, it’s something like Shhhhhmanski. But here’s the thing: You can probably* just call him Jeff! He certainly deserves the respect and honor of being called Dr. Szymanski, but he’s friendly and open enough that you’ll find yourself on a first-name basis.

*For the record, he hasn’t authorized me to say you can call him Jeff.

Jeff Szymanski has undertaken the incredible responsibility of leading the International OCD Foundation. It’s a job he seemed born to do. He doesn’t have to have OCD himself to go to bat for us — he seems as genuinely frustrated as we do when he hears “I’m soooo OCD” or that OCD is all about a germ phobia. He’s working hard to overcome stigma and spread the awareness OCD — and its sufferers — so desperately need.

Tell us how you came to be the executive director of IOCDF.

In 2001 I was hired as a staff psychologist at the McLean OCD Institute in Belmont, Massachusetts, a suburb of Boston. In 2008, as the Director of Psychological Services there, I became aware of the transition at the Foundation. Namely, that the organization was moving from New Haven, Connecticut, up to Boston. During my tenure at the Institute, while I was able to help many people with OCD and related disorders, what I was continually frustrated by was the lack of access many individuals with OCD had to effective care. I worked with many people, who, if they had gotten the right treatment years before, would not have had to suffer unnecessarily for so many years. When I was offered the position at the Foundation, I realized it would give me the opportunity to work on a much larger scale to help those affected by OCD and related disorders in a more macro way.

During the 2015 conference wrap-up podcast, you mentioned that your motivation to become a psychologist wasn’t primarily about helping people. However, that’s exactly what you’ve been doing. Did you make a conscious decision to make that shift, or did it happen naturally?

When you apply to graduate school you are asked to write a “personal statement.” That is, “Why do you want to be a psychologist?” When I look back at what I wrote then, it was true. I wanted to understand why people did what they did. Why they made the choices they made. This is still the primary driving force in my career. At the Foundation, the question changed to “Why, as a society, can’t people who need access to help get access to that help? How do we, as a group, make decisions in which people who could get better aren’t given that opportunity?” At my core I am a problem solver. I am curious. I like solutions.

I don’t see my role as helping people. I see my role as empowering people, giving people access to resources and tools to help themselves. Maybe it’s semantics, but it is how I think about things.

What do you see as the biggest misconception about OCD?

I wrote a blog a few years back entitled “The ‘D’ in OCD.” I think this captures my thinking about this to this day. If you confuse being “obsessive” or “compulsive” with OCD, then it is easy to dismiss or minimize the experience of actually having OCD. The other common misconception concering any disorder, is that our mental health is 100% determined by our willpower. Our brains, our physiology, the power of habit and a lifetime of habits (that may or may not have ever been “chosen”) are incredibly powerful. When we say to someone, “Don’t be so anxious,” or “You don’t need to worry so much,” we are enacting the fallacy that we can “control” our anxiety or worry.

What advice do you have for someone who may not have ready access to the proper care, whether because they live in a rural area in America or in another country?

The Internet is the great connector! There are amazing online support groups and a “virtual” community that is willing to be there for people all across the globe. I believe accessing a community can be incredibly healing. There are also more and more internet-based services for people who need more structured support: some therapists treat clients via skype, and there are now numerous smartphone apps to help with self-directed ERP. Here are some of those resources.

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Every once in a while someone will email me from another country and say they can’t tell their family or friends about their OCD because their culture doesn’t accept mental illness or has strong stigmas against it. How can someone in that situation get support? And how can we help spread awareness in such countries? 

As noted in my answer above I think that people can connect via the Internet if they have access. This issue is also the main motivation in changing our name to the International OCD Foundation. To widen our focus to those all around the world affected by OCD and related disorders. And to bring together those willing to help. It has been an incredibly rewarding experience to build our Global Partnership program. So much more room for growth there, however. In 2015 we appointed our first international spokesperson, Ro Vitale, specifically to help increase awareness and combat stigma in Latin America. We look forward to continuing to expand Ro’s role in that regard, and continuing to partner with other organizations with similar missions around the globe. With more awareness there will be more acceptance.

The IOCDF recently launched a new initiative, asking people to become OCDvocates. Tell us more about that.

When I took over the Foundation in 2008 there was so much infrastructure and programming we were focused on building. During those first few years we received an increasing number of people saying they wanted to be part of the mission. But, we didn’t have a place to “plug them in.” Last year, our Director of Marketing and Communications, Carly Bourne, along with our amazing Spokespeople, Jeff Bell, Elizabeth McIngvale, Romina Vitale and Ethan Smith all collaborated to come up with the OCDvocate program. The idea is to have grassroots-based activities and “calls to action” that anyone who would like to participate in can join. An example of this is the holiday card initiative this past year. We asked our OCDvocates to write a personal note in a holiday card so that we could mail them out to patients currently receiving treatment at residential and intensive outpatient treatment programs around the country. Patients were able to receive words of encouragement from those who knew what it was like to be where they were at in that moment and to continue to fight to get their lives back. Anyone can become an OCDvocate by filling out the pledge.

What would you tell someone who feels hopeless, who thinks his or her OCD will never get better?

I borrow this from the acceptance and commitment therapy (ACT) community: With or without OCD symptoms, what really matters to you in your life? At the end of it all, what do you want your life to stand for? And OCD symptoms or not, how can you commit to making those values a reality?

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Let’s say I’ve never been to the IOCDF’s Annual OCD Conference before. Why should I go?

This one is your hardest question! This is like learning to play tennis by reading a book about how to play tennis. The sense of generosity and community at the Annual OCD Conference is powerful and you can only truly understand it if you have attended one. I believe one of the most valuable experiences for those affected by OCD and related disorders is to find a community like this, and the Annual OCD Conference exemplifies that in spades!

One of the most common stories I hear from others with OCD is “It took me umpteen years to be diagnosed because I thought people with OCD just wash their hands a lot.” Another is “I did talk therapy at first and that made my OCD worse.” What can we do as a community to dispel myths about OCD and make sure therapists know how to properly treat OCD?

This is a core issue that we focus on every day at the Foundation. Raising awareness about what OCD is and what effective treatment looks like. This is the driving force behind all of our initiatives from the Conference to the Walk to OCD Awareness Week to the OCDvocate program. It is all with the intention of making sure that if you are affected by OCD or a related disorder that you have access to the help you need.

One thing that helps tremendously with this, is people like you being willing to share their stories publicly. Whether through a blog, or book, or simply by talking with family and friends. The more representations we have of what OCD actually looks and feels like, the more people will be able to identify their symptoms and find the right help. Sharing stories also helps to dispel myths and combats stigma by putting a (familiar) face to the disorder. Stigma is so often based out of fear and a lack of understanding. By sharing your story, you are actively helping to eliminate that fear.

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

Get connected. Get involved. On any level.

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?

Obsessive Christmas Disorder

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By now you’ve probably heard of the controversy over a holiday sweater Target is carrying this season. It reads “OCD Obsessive Christmas Disorder.” On the surface, it’s “just a sweater.” At least that’s what people keep telling me. They’ve also told me it isn’t making fun of OCD, and that “compulsive” is a pretty key word to the whole term. Of course, I think “obsessive” and “disorder” are pretty key words as well, and they’re included on the shirt.

An alternative title to this blog post could be “When Advocacy Turns Ugly” because I’ve been getting some nasty tweets in response to the one I sent to Target on Tuesday:

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Usually when I open Twitter I’ll have somewhere between two and five notifications. The morning after I sent this tweet I had 22. What?! I soon realized why: My tweet was included in a Mashable article about the issue.

I didn’t attack anyone or call anyone names, but you wouldn’t have guessed that from some of the responses. I’d include screen shots of them here, but so many of the people who initiated an argument with me ended up blocking me. Here’s a general sampling of quotes, though:

  • “THIS IS SOMETHING THAT ACTUALLY MATTERS. GET THE FUCK OVER IT.” (Alongside a photo of people protesting rape — for the record, I am against rape as well as the perpetuation of stigma and misinformation. Empathy is a superhero power I have.)
  • “She’s just doing this to get attention for her book. Take a seat.”
  • “If you can’t see the humor in anything — what a sad person you are.”
  • “We the people should not have to be forced to deal with your situation.” (Very presidential sounding!)
  • “This PC bullshit is out of control. JUST STOP!”
  • “Stop trivializing people who can separate reality from a sweater.”
  • “Just because you wrote a book does not mean you know everything.”

The last one is priceless because the person linked to an article written by my friend and fellow advocate Janet Singer, in which she noted how beneficial it can be to use humor as a coping method. Nowhere in the piece did Janet suggest that being made fun of is an effective therapeutic solution. Her point was that being able to laugh at oneself can be helpful.

Now this I laughed at! (Thanks, Janet, for defending me when I invited you into a less-than-fun conversation.)

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The OCD community is pretty tight-knit, so in the future I’d do a little research before pitting us against one another.

In the midst of all of this, a reporter from KARE 11, the Minneapolis NBC affiliate, asked if I’d be interested in chatting about the topic. Since I’d already seen so many icky tweets I was nervous about more backlash, but of course I said yes to the interview. I won’t read the comments on the piece, so I don’t know if people are bashing my views or not. In this case ignorance is a little blissful, if not a means of self-preservation.

What I can’t believe about this whole social media war is how many people have told me I must not have a sense of humor because I didn’t find the sweater funny. I love to laugh! I love The Simpsons, Bob’s Burgers, Dumb and Dumber, Parks and Recreation, The Office — I’m not exactly highbrow. I probably joke too much, in fact. But OCD isn’t funny to me. Call me all the names you want — if you must — but it’s very difficult to see the humor in something so painful. My obsessions made me wish I were dead. When I was in my darkest, lowest points I thought there was no way out. The tremendous guilt I felt was overwhelming. Come up with a clever pun to make me laugh. If you’re my dog, chase your tail. You can even make fun of me! But don’t trivialize the single worst aspect of my life and tell me to get over it. And please don’t swear at me. Geesh. That’s just rude.

I may be thin-skinned, but I wouldn’t have it any other way. My empathy doesn’t begin and end with OCD. I will stand up for any marginalized group and won’t back down just because some mean people think I’m whining. Taking a stand is how we effect change. Pushing an unpopular opinion and being shouted down and harassed isn’t easy — but that doesn’t mean it isn’t right.

So, yes, this week has been strange. But the mean tweets were just a part of it. I also got wonderful notes and messages from people thanking me for working on their behalf. That’s who I do this type of thing for, others with OCD whose voice isn’t quite out there yet, for whatever reason. I can’t speak for everyone, but I will voice my opinion in the hopes that it will bring about change for all of us.

Tuesday Q&A: Ethan S. Smith

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It’s a big week — the week of the 22nd annual OCD Conference! It’s in Boston this year, where the International OCD Foundation (IOCDF) is based, and I’m so excited to be a part of it again. But enough about me.

Last year Ethan Smith, a Los Angeles-based actor, writer, producer, and director, delivered the conference keynote. Ethan described his fight against severe OCD, and even as he was talking about the darkest moments of his life he managed to make the audience laugh. In retrospect, he was able to see — and share — the humor in getting kicked out of residential treatment at the OCD Institute at McLean Hospital in Boston by deliberately hurting himself and pretending to pass out on a snowbank.

Ethan will be at the conference this year as well, so be sure to check out some of his sessions.

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Photo credit: Roberto Farren

Last year, after years of suffering from OCD, you gave the keynote presentation at the 21st Annual OCD Conference. What inspired you to apply for this huge honor — and long speech?

To be honest, I wanted to give the speech the minute I knew it existed. Probably desperate is the right word when describing how badly I wanted my story out there so others wouldn’t have to go through what I went through. I knew through that speech I could impact the most amount of people. 

During your presentation you shared candid videos of yourself engaging in ERP. You said you’d never shown this footage to anyone, and suddenly you were sharing it with a room full of people. How did you find the courage to do this? Why did you think it was important for the audience to see you in your lowest moments?
 
During the intervention portion of my treatment, I was fortunate enough to have one of the therapists at the OCDI playing an almost coach role in my life, in addition to my therapist. Because of this, although I was a victim of stigma many times before getting better, I never felt embarrassed about what I had gone through because I was able to discuss my concerns, doubts, fears, and pretty much everything else as they happened in the real world, in real time. I started to feel a sense of pride and accomplishment for what I had been through. Therefore, those videos represented a completely different person. They represented what I had been and where I had come from, not who I had become. It was a shell of my former self. But a very significant shell. It’s a side of OCD people don’t often see, especially the public. It’s a far cry from quirky hand washing or laughing about germs. Seeing how low OCD can take you is necessary to reach those who haven’t hit that bottom yet. To let them know that bottom exists should they choose not to pursue treatment or take it seriously. It’s the reality of severe OCD.

You’ve said you were born with OCD. How did you realize there was a name for what you were dealing with? When were you diagnosed?

It was only apparent I was born with OCD in retrospect. I went to my first therapist at age 6 but he did not diagnose me with OCD. I just had “issues.” I was a quirky kid with emotional issues. This was 1984. Did they even have an OCD diagnosis then? I didn’t realize there was a name for it. And to be honest, I didn’t really care. I don’t think I realized it was odd behavior until high school. I knew I wasn’t like other kids, and I definitely was unhappy much of the time, but I always thought, “That’s me. That’s who I am.” I don’t think I ever considered it was something else until I was actually diagnosed. I was diagnosed at age 14 after my first panic attack in high school. I refused to go back to school. I would just walk in the school and panic. After anything physical was ruled out, I went to a “top” psychologist in the Atlanta area and he diagnosed me with OCD. 

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Ethan and IOCDF director Jeff Szymanski

As a young adult you had a fear that you’d harm yourself, a fear so powerful you became scared of your own hands. Your life must have been pure torture at the point — you couldn’t escape your own hands, after all — but we know you’ve overcome this fear. How did you do it?
 
Just to clarify, most of my young adult life was spent being afraid of illness. Not germs, but a fever was meningitis, or a headache or a brain tumor. Constant trips to the doctor, I took my temperature upwards of 60 times a day, and carried thermometers with me at all times. The fear of harming myself didn’t come until I was 32 when I that trio of being off my meds, my girlfriend breaking up with me, and my grandfather dying happened. I just spun out of control and my OCD shifted based on a question a psychologist had asked me. He asked if I was impulsive. “Would you ever impulsively hurt yourself?” I thought the question was ridiculous. Of course I wouldn’t. And then I got in the car and thought, “What if I did? What if I just lost control and started hurting myself?” That’s when the OCD shifted. That was also the day I completely stopped taking my temperature for the first time in almost 20 years. 
 
As far as how did I do it, that’s a really big question. So I’m going to give you a very simple answer: I became willing to harm myself. I became OK with the idea that it might happen. I finally embraced the uncertainty and embraced radical faith and what my doctors were telling me.

After years of treatment — you attended the McLean OCD Institute (OCDI) but got kicked out and your mom even lived with you for a semester during college — you ultimately had to help yourself. How did you realize that if you were ever going to improve you had to take responsibility for your own recovery?
 
Ahhh, finally an easy question. When I was living in the crack house and hadn’t left the bed in six days. I hadn’t eaten, showered, barely drank any water. I realized no one was coming for me. Praying hard wasn’t enough. There was no magic that was just going to take it all away. I had to meet people halfway. I had to invest in myself what others were willing to invest in me. Only then, did I stand a chance. So I got out of bed and headed toward the fire. I never looked back.

Your parents were very involved in your treatment plan. Why should family members be a part of the recovery process? Is there such thing as too much family involvement?
 
I definitely think it’s individual in terms of too much involvement. But, what seems to be a very consistent pattern with OCD is that good parenting favors the OCD, not the child. The treatment for OCD is completely counterintuitive to parenting. Therefore, it’s a family disorder. The behaviors of the parents have to be modified in order to achieve long-term success. They must be just as educated about OCD, how it works, how it affects the sufferer, what snuffs the OCD out. I’m very passionate about imparting my position on family involvement. I firmly believe true success is impossible without the family/wife/caretaker component. Otherwise, after, let’s say, residential treatment, it’s just a dry addict going back to all his druggy friends he used to hang out with. Only a matter of time before he uses again. And once that snowball gets rolling, you’re back to square 1…or worse. 

Do you have any advice for someone considering residential treatment? Advice for not getting kicked out?
 
Haha! Yeah, don’t cut open your head and dive into a snowbank pretending to be passed out. Easy…Treatment is scary, and hard, and terrifying, and it most definitely gets worse before it gets better. But like I said in the keynote, the pain you invest now is worth the pleasure you’ll experience the rest of your life. We overcomplicate treatment. Treatment, at least in theory, is easy. Listen and say yes. That’s it! That’s all you have to do. Unfortunately, in order to do that you have to not listen to your own brain, what you believe to be your gut, all that you know. You’re most likely an incredibly intelligent, smart, creative individual and you probably know it. So, being told not to listen to the part of you that you believe makes you incredibly unique and special is a tricky proposition. Slowly but surely, however, you start to hear that the OCD sounds different than “you”; it becomes less tricky. It doesn’t define you or your uniqueness. In fact, in regards to OCD, you’re not special at all. It’s all the same tornado in all of us. Sure, it may suck in different stuff, but it’s the same. 
 
OCD is like math. In math there’s a right or wrong answer, and nothing in between. Treatment is exactly the same way in my opinion. Can you get better kinda sorta trying? Sure, but I think that’s still a wrong answer. Negotiate with OCD, surfing that area between the right and wrong answer, and you’ll never truly achieve the full life you’re looking for. Fully embracing treatment, especially residential, can potentially give you that right answer, that full life. Ever think you could have OCD and serenity at the same time? Yeah, me neither. But I do.ethansmith1

You’re able to joke and laugh about your OCD. How do you feel about others joking about it? How about people who claim to be “soooo OCD” on Twitter?

You have to have it to joke about it. Just like being Jewish and making a Jewish joke. Totally kidding. Listen, I think it’s a fine line. I know a lot of people that get really angry when the term “OCD” is misused or joked about. To be honest, for the most part, it doesn’t bother me, because in most cases it comes from a lack of education. When I hear it, I see it as an opportunity to enlighten and educate so that it doesn’t happen again. Anger or frustration regarding doesn’t yield an effective result. I know what cancer is and how it affects others. For the most part, you don’t hear a lot of cancer jokes. If you do, yeah…that person is a %*$&%*. But OCD, as with many mental illnesses, is still so misunderstood and grossly misrepresented. So can I blame the majority of people for saying they’re  “sooooo OCD?” No, but I can engage those people in a friendly way and redirect into something meaningful.

You recently shared some exciting news: You’re an IOCDF spokesperson! How did this come about?

Much like the keynote, I knew I wanted to be a spokesperson the minute I discovered they existed. It was just another avenue to share my experiences on a larger scale in the hopes to make a difference. As to why it happened or came about, I definitely expressed interest in becoming one to the amazing individuals at the IOCDF. I’m not known for being quiet or introverted, so I was vocal. But, in my heart, it was never about the “title” or becoming a “spokesperson.” It was about the work. It was about those suffering and not getting help. It was about no other child or adult suffering in the way that I did. That was/is my passion and my mission. But you can’t go on a mission from your couch, so I started talking to other people. Being open about my story. Allowing my former therapists to reach out to me as a resource and talk to their patients. And then becoming involved at the conference and speaking, et cetera. This work that I do, if you can call it work, is the most fulfilling part of my life.

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

Uncertainty is one of the greatest and most exciting aspects of life. Give it a big hug. Oh…and don’t cut your head open and jump in a snowbank.

OCD Coverage in Print and on TV

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This has been a big week! On Monday this article in The Atlantic came out, which I was so honored to be interviewed for so I could share why I think throwing around the term “OCD” is a problem.

And on Tuesday, my appearance on Australian daytime talk show The Daily Edition aired. It was filmed live, and I was so nervous! The hard part about going on live TV to discuss an anxiety disorder is all of the anxiety you feel before, during, and after. It’s natural to feel unsure about something like that no matter who you are–pile OCD on top of it and the nerves can reach a fever pitch.

Despite all of that, though, I’m so glad I did it. Within minutes of wrapping the interview I got an email from a woman in Australia who’d just seen the segment. She said, “I have what you have. Are you all better now? Is there hope?”

I told her I’m much, much better and that, yes, there is hope. The reason I talk about this admittedly embarrassing topic, even to a reporter at a national magazine and to hosts of a national talk show, is that I needed to hear what I was saying before I was diagnosed with OCD. Long before. The more people I can help, the better, even if it’s just one person at a time.

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.

 

Lena Dunham, NBC News, and Me

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So I’ve waited a while to post this NBCnews.com article I was interviewed for, and I’ll tell you why: I have OCD. Hold on, you already knew that. I have OCD, and I’m a proofreader, and there are mistakes in my section of the article! I haven’t been able to let it go. I can’t tell you how many times I returned to it in the first several weeks after it was published, hoping the errors had been fixed. It was almost becoming another obsession. I’m not 36 (I’m 35) and I babysat (not babysit) all through college–but I digress.

I’m glad I was able to share a bit of my story with a fairly broad base of readers, especially since I ended up so comfortable with the woman who interviewed me that I spilled the “secret” that one of my worst obsessions was that I’d inappropriately touch a child. More people need to know that that’s a symptom of OCD; I can’t even describe the toll those obsessions took on me until I knew I had a treatable disorder.

As embarrassing as it can be to talk about these things, spreading awareness wins out for me. And not to be selfish or anything, but talking about it and writing about it is like ERP for me, too.

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.