How are you feeling now that you’re back home in the real world, outside the bubble of the OCD Conference? I feel a little sad, and mostly exhausted. Adrenaline carried me through the entire weekend.
I love blogging during the conference so much, and arriving eight hours after I expected to threw me off and I didn’t keep up as I’d wanted to. I’d planned on kicking off my shoes for a bit before launching into a full long weekend — but I wasn’t the only one whose flight was delayed, and not the only disappointed person. So we all soldiered on!
I had so much fun at the Friday night art activity, Draw a Monster. I really have no artistic ability, but I tried anyway! Did you go out of your comfort zone over the weekend? Maybe attending the conference was the bravest choice you’ve ever made.
Thanks to everyone who attended our Saturday afternoon panel about taboo intrusive thoughts. They’re so incredibly difficult to talk about, and so many people feel utterly alone, so we were happy to share our stories for the greater good.
How about that keynote? David Adam was so engaging, with just the right touches of humor, candor, and hope. Did you go to the social afterward? Did you dance? I did! I also accepted the Hero Award, which I’m still shocked about! And let me tell you, I was so, so nervous to get up there in front of all of you to accept, so thank you for your warm reception.
Saying goodbye is always difficult, and I’m already looking forward to San Francisco next year. Remember to take care of yourself as you ease back in to your daily schedule. Here’s to spreading awareness, reaching new milestones in recovery, and building on the weekend’s new connections over the next year.
Happy Friday, and happy OCD Conference weekend! I was so looking forward to arriving in Chicago yesterday afternoon — but multiple flight delays meant I got here eight hours late. Too late to roam the lobby looking for friends, too late for a reception I always look forward to, too late to freshen up. Ack! And it turns out I wasn’t the only one. Plenty of frustrated conference attendees were held up at airports, but everyone is all smiles today.
Well, as disappointed as I was to have missed several hours of fun, I got surprising news courtesy of the Conference program: Apparently I’m being honored with the Hero Award tomorrow night! What? Had I missed an email? I guess not — the sneaky folks at IOCDF had purposely kept it a secret.
I’m thrilled, of course, and it makes up for the hours of idle time at the airport and worrying whether I’d make it at all. While I’d love for you to come hear my two-minute acceptance speech, the most important reason you should come to the dinner and dance tomorrow night is that everyone who is anyone will be there mingling, dancing, and having a fantastic time. I mean everyone. (Is this peer pressure? Nah.)
Although I could not fall asleep last night, I woke up feeling oddly refreshed. You know why? I’m at the OCD Conference, the most wonderful time of the year!
One of my favorite parts of the weekend is running into old friends in the lobby and around the hotel and meeting new friends along the way. So that’s how I started the morning, before I went to hear the amazing IOCDF spokespeople — Jeff Bell, Ro Vitale, Ethan Smith, and Liz McIngvale — share their reasons for becoming advocates. Stigma and confusion is still all around us, friends, so the Fab Four encourages you to help spread awareness — and they don’t even expect you to go all in as they have. Jeff recommends that you dip your toe in to get an idea of how advocacy makes you feel. Try it! Share a great personal essay on social media, or politely speak up when someone misuses “OCD.” You can inspire hope.
I’ve been so busy since that session that I haven’t been to anything else yet! What have you attended today? Next up for me is Art Therapy for Adults: Draw a Monster for OCD, an interactive art event where you can draw your obsessions as monsters, which is how many people with OCD view them. I’m just helping out, and I admit I draw like a child (what’s “perspective”?), but you should come to learn from a true artist and OCD survivor. It’s at 7 in the Denver/Houston/Kansas City room.
Tonight I hope to fall asleep before 3:30. Hope you’re having a blast.
Ro Vitale is a singer and songwriter from Buenos Aires, Argentina. She was the keynote speaker at the Spanish Program at the Annual OCD Conference in Los Angeles last month, where she stole the show with her honesty, openness, and amazing singing voice. Today, she writes a guest post for our blog about her experiences at the conference, but also about the bigger picture of what it’s like to live with a diagnosis of OCD. Read the post below, and be sure to download her song My Inspiration on iTunes or Amazon, of which she is donating the proceeds to the IOCDF.
It’s been just a couple of weeks since I had the chance to participate in the 21st Annual OCD Conference in Los Angeles, CA. Just as pain’s effects endure over time, as aftershocks occur in everyday conversations (with ourselves or others), the same thing happens with wonderful experiences. Today I won’t talk about OCD, even though it’s clear that’s all we talked about during the Conference. Instead, I will deliberately attempt to generalize my vision.
I think about the surprising elasticity of certain human characteristics when properly stimulated. I have seen how often our difficulties, shortcomings and dysfunctions become our prisons and monopolize our will, to the point of shaping our identity. And for those of us who hold the symbolic certificate of an unquestionable diagnosis, we seem to walk through life dressed in a suit of our pathology, tolerating self and social stigma, slowly putting away the cards of our dreams as if they had no place at the game table. And I’m saying that because I often see us manipulating reality with our legitimate “I can’ts”, gently stroking the back of our symptoms, almost like a pet, justifying our frustrations over and over again. Oh, yes, I should have said our legitimate frustrations.
But even though it’s our right to be understood and respected for our difficulties, our torment and struggles, there is another great truth on the opposite side of the coin. A truth that states that we are NOT our difficulties, our pathology or our disorder. We are NOT our symptoms and we certainly are NOT our dysfunctions. All that is what HAPPENS to us, but it is not our identity. If even a concept as foundational as identity has stretchability, maybe it’s time to look at ourselves in a cleaner mirror.
Romina and her mother at the OCD Conference in LA.
Throughout the conference, there were no OCDs versus non-OCDs, ‘healthy’ professionals versus ‘troubled’ attendants. There were no scholars versus ignorants, problem-solvers versus problem-havers, treating therapists versus treated patients, supporters versus supported. Instead, there was a group of individuals, homogenized by a shared wish; a group of people deeply touched, moved and motivated by the same vision, inspired by hope. Above all, a group of individuals being heard and seen through their unique creative identity. No diagnosis would blur or cloud any I.D. picture (if I may use this metaphor). No symptom was greater than the shyest smile. This was probably one of the things that caught my attention the most. There were more than enough reasons to rightly establish a hierarchy of positions and roles. None of that happened. I remember having discussed this very same thing with Dr. Jeff Szymanski, IOCDF’s executive director, Carly Bourne, director of communications and my dear Stephanie Cogen at a meeting before coming back to Buenos Aires. I’m still so impressed and inspired by their wonderful work and their vision. I’m still processing everything I learned from them. The conference itself has certainly been a life-changing experience.
My commitment to raising awareness about OCD is much broader than the (very important) task of conveying information on the specific appearance of OCD symptoms (which might encourage sufferers to seek help), or the necessary mission of fighting stigma and social exclusion, or the fundamental goal of expanding and facilitating access to appropriate treatment, or spreading the main message that there is hope and we can get better. My commitment is much broader, because I strongly believe that we must dis-identify ourselves from the difficulty, the symptoms and ultimately the disorder itself, to find ourselves in our dreams, our voice and our creativity.
The more I talk about OCD, the less OCD will speak for me.
We seem to keep listening to the same old official voice of our failures and difficulties. Maybe it’s time to start hearing the sweet sound of another ringing bell: the one that makes us unique; the beautiful sound of our own voice, the kind, creative and sounding lines that we are made of. Even if it’s hard. Even if it hurts or annoys us at first. If we just let it, our willpower will work its magic.
Maybe it’s time to look in the opposite direction of what holds us back. Maybe it’s time to acknowledge our elastic strings, our own eyes, our creative freedom, our kindness, our unique smile.
I’m home now, and I’m still coming down from my conference high. I’m sure you are, too. It’s quite a shift from finding inspiration around every corner to having my dogs paw at me to let them outside (and back in and then back out and back in again). I’m back to work tomorrow, and I know it will be an adjustment to have a regular day again, where not everyone gets OCD or gives me a pass for being late because, hello, I have an anxiety disorder! Let me know how you’re doing back in the real world, too.
The entire experience was incredible, but for me the biggest highs took place on Saturday night, when the social was held in the hotel ballroom, and Sunday morning, when I co-facilitated a workshop for teens with my friend and amazing advocate Chrissie Hodges of Denver.
On Saturday night we got dressed up for dinner and the awards ceremony. First up the IOCDF honored advocate extraordinaire Margaret Sisson for her role in spreading awareness in Georgia. Margaret was inspired by her son, Riley, and his personal struggle with OCD to get involved on a grassroots level. Although the IOCDF presented her with a hero award, she stated in her speech that Riley is her hero. I don’t think there was a dry eye in the room.
Next up was Minnesota native comedian Maria Bamford, who received the first annual Illumination Award. Bamford uses her comedy circuit to spread awareness about OCD, telling side-splitting–and sometimes heartbreaking–stories about her life with the disorder. She sang a hilarious little ditty she wrote about her obsessions and compulsions, which had me cracking up every time I thought of it the rest of the night.
Since I’ve loved Bamford for years, and because she’s a fellow Minnesota native, I quietly approached her. I told her I’d hoped to see her show last fall in Minneapolis but that I’d already spent money on a David Sedaris appearance. She nodded and said, “You have got to plan your comedy show budget very carefully.” When Maria went to the dance floor for the first song of the night, IOCDF Communications Director Carly Bourne said, “Alison, go dance with her!” Ack! Let me tell you — I do not dance. But I danced on Saturday! What a blast. I’m sure there’s photographic evidence that I may already be regretting…
I managed to pull myself away from the excitement early enough to get a decent night’s sleep in preparation for my Sunday morning workshop. I was excited and definitely nervous about it, but we had a great turnout and I think it went really well. The teens in the group opened up with us and shared tips about “coming out” with OCD and reacting to statements like “I’m so OCD.” One teen who’d been bullied told another that all he needs is one good friend who understands and who will listen. As much as I believe we have nothing to be ashamed about, the truth is that some people who don’t understand the disorder can be cruel–middle schoolers and high schoolers in particular. Kids are already navigating their social lives, and it can be painful to tell someone they have OCD only to be made fun of. It’s definitely a delicate balance, and it illustrates how important professional and family support is.
We think a great way to respond to “I’m so OCD” is to give the person the benefit of the doubt. Maybe they really do have OCD, and that’s how they share that information. One teen said that he often sends people to the IOCDF website so they can learn what OCD really is. If they do have the disorder, now they have a great resource to find help. And if they don’t, now they have a better understanding of how debilitating it can be and may think twice about joking in the future. Chrissie and I were so impressed with the teens who came to our workshop! If you were there, thank you! Keep up the good work, and remember you’re not alone.
Thanks to everyone who came to my book signing and to my workshop, and to everyone I met and chatted with. I made connections that will last a lifetime, and I feel humbled by so many of my fellow advocates. (Jeff Bell and Shannon Shy should be eligible for sainthood, I think.)
I’m in OCD celebrity heaven! Forget Ryan Gosling–I got to meet Lee Baer, author of Imp of the Mind. That book played such an important role in my triumph over intrusive taboo thoughts that I had to hold myself back from hugging the man and weeping in his arms. He was very gracious, and seemed happy to meet me as well!
I attended his session on sexual and violent intrusive thoughts, which reaffirmed how amazing he is, as well as how incredibly painful intrusive thoughts are for people with this type of OCD. He asked for volunteers to engage in an impromptu CBT session with him, and he sat at the front of the room with a young woman who fears that she’ll run someone over with her car without realizing it. So far she’s coped with her fear by avoiding it; she got an accommodation from work so she can take the bus instead of driving, and her husband drives her where she needs to go. Dr. Baer advised her to start with less intimidating exposures like writing down the worst “Stephen King” scenario that could happen and record herself reading it. He estimated that after about 10 hours of listening to the recording her anxiety will have subsided quite a bit and that by the end of the summer she’ll feel ready to drive again.
Now I’m off to an affiliate meeting, where I hope to learn a lot to apply to OCD Twin Cities, where I’m president. Tonight there’s a social, and IOCDF will present an award to comedian Maria Bamford, a fellow Minnesota native!
I can’t explain how incredible it feels to be among so many people who understand me–it’s one thing to email with people who have OCD, but it’s quite another to be surrounded by them!
Last night I planned today’s schedule. I fully intended to go to a morning session, but my roommate (and fellow workshop facilitator, Chrissie Hodges) and I ended up sitting in our room, drinking coffee and talking about OCD. We’ve already talked about how similar our backgrounds are, but this morning we went more in-depth about our triggers and darkest moments. I’ve shared things with her in the last 24 hours I’ve never told anybody! And instead of saying, “Oh, Alison, that must have been so terrible,” she laughed. She laughed because she’s been there. She fully understands what it’s like to have inappropriate intrusive thoughts. (Don’t go around laughing when people divulge secrets to you in general, though.)
After we finally pulled ourselves out of our conversation, I got ready for my book signing. I met some wonderful people with OCD. I’m still amazed how many people I’ve met who have obsessions like I’ve had. For so many years all I knew of OCD was that people with it would wash their hands all the time. But I’ve also met several people whose OCD symptoms were nothing like mine! The more people I meet, the more I realize that no matter what our particular stories may be, we share a common truth: We’ve at some time or another been ruled by our obsessions.
I attended a session on how OCD is portrayed in the media, and how inaccurate news stories can be. The media’s job is to get as many views as possible, and sometimes that means sensationalizing this disorder, twisting the truth for dramatic effect and picking only the most headline-worthy quotes from lengthy interviews. But the takeaway was that we can all be advocates, and we don’t have to wait for traditional media sources to tell our stories for us. We can tell our own stories; we can share them on Facebook, blogs, Twitter, and in person.
I just came out of a session for young adults; a panel discussed the possibility of relapse and how we can prevent a downward spiral. The fact is that there’s no cure for OCD, and that means we will have intrusive thoughts, and we will feel anxious and have fears. That’s life! The goal is to be armed with the right tools and not to beat ourselves up when those things do happen. An attendee made a great analogy: If you were on a weight loss plan, lost five pounds, and then gained two back, would you just give up? Or would you say, “Hey, that’s just a minor setback. I know I’m capable of losing weight because I’ve done it. Now I just need to get back on track.” Instead of giving in to OCD because it’s trying to poke its nose back into your business, recognize what’s happened and move on. Elizabeth McIngvale was on the panel and said that if you, say, wash your hands as a ritual, you can fight back right then and there and engage in an exposure. Stay mindful and you can decrease the chances that you’ll experience a full relapse.
That’s what I have for now! There’s still more to come, and even though I attended only two sessions today, there are so many more to choose from. It was hard to choose just one in each time slot. See you soon!
IOCDF blogger Alison Dotson is attending the 21st Annual OCD Conference for the first time this year, and will be blogging about her experiences all weekend in Los Angeles.
I arrived in LA early this morning for the first day of the conference, and it’s been a blast so far! I’ve already made so many connections, and I’ve finally met people I’ve only known through email and Facebook.
Tonight IOCDF held a reception for conference speakers, where I met IOCDF staff members, a few authors of books on OCD, three fathers and one mother of adult sons with OCD, a young woman who just two years ago couldn’t step on sidewalk cracks and is now an advocate–just to name a few. Everyone is so open, ready to share their own stories as well as listen to others’.
I’ve been up so long today I had to deny everyone my mad skills at pub trivia, opting to linger there a bit before heading back to my hotel room. I need to rest up now because everything will be in full swing tomorrow and the rest of the weekend. I can’t wait to see who shows up to my book signing at 12:30 tomorrow, and to attend as many sessions as possible.
Memorial Day Weekend is not only a time to celebrate the beginning of summer with friends and family, but also a time to remember those who we may have lost. In today’s blog, we are honored to share a guest post from Denis Asselin as he remembers his son Nathaniel and the journey Nathaniel’s loss inspired.
“Are you still walking?” friends often ask me. I answer, “Is there a cure for OCD and related disorders yet?”
Seven million, four-hundred thousand steps later (or over 3,700 miles), I continue to walk to tell Nathaniel’s story. One pilgrimage has morphed into another, and the miles have had an impact. Our son’s journey, as well as ours, continues, a testament to the power of words and stories as well as the unanticipated magic of the butterfly effect.
One of Nathaniel’s favorite childhood novels was The Hobbit. I first read it to him when he was quite young, and I could see the tenacious grip of the plot in his dark brown eyes begging me to keep on reading. We understood Bilbo Baggins’s hesitancy to leave the Shire since the comfort of home and the predictability of daily life can lure anyone into complacency. But we also knew that a big adventure awaited him with his first act of bravery—stepping out the door—and once the journey began, there would be no stopping it.
I invite you to step out of your comfort zone and tell your story, too. It will make a big difference, not only in your own life, but also in the lives of sufferers and the families and friends who live with these disorders. For me, a phone call from a family in distress who lost a son to body dysmorphic disorder (BDD) in March, an email from a woman about her daily challenges with this disorder, the courageous testimony of Eric Duarte at the 1 Million Steps 4 OCD walk in Sacramento two weeks ago, and six-year-old Cameron’s struggles with OCD let’s me know that we have yet to reach our goal.
This spring I have been re-reading the daily blogs of my walks in 2012 and 2013, and I vividly remember each day—Lynn at the breakfast diner in Philipsburg; Pat at the clinic; Milton at Kids’ Peace; Janet’s $10 contribution in Hatfield; Eric, the restaurant manager, who paid my meal at Carrabba’s; Mary Ellen at the Dunkin Donuts in Connecticut; and the warm welcome of residents at the OCD Institute at McLean—all of them encounters at the heart-level that have been imprinted in every cell of my body. I told Nathaniel’s story over and over again and my listeners shared their own stories of cruel brain disorders suffered by family members, friends, or even themselves. What stories do you carry inside you? Who is your Nathaniel? What are you witnessing in your own life that needs to be shared?
Stories can heal us, but first, we have to have the courage to tell them. And when we do, we learn that we do not stand alone. Together, we create a community of hope and support that will draw more attention to the need for funding, research, and better treatment. Research is yielding answers, and more financial contributions can bring us to the tipping point. But first, we’ve got to step out the front door.
Please join us in Boston to walk on Saturday, June 7th, or walk in your own community as a public witness to these disorders. Virtual walks count too, if getting out is too difficult. But remaining isolated and alone in the Shire won’t do. Buen Camino!
Today’s post is a guest post from Shala Nicely, who originally wrote this blog for her own OCD blog called “Aha! Moments.” You may remember that Shala was our keynote speaker at last year’s conference in Atlanta, where she spoke about her journey through OCD treatment, recovery, and her decision to go back to school to become an OCD therapist herself. Shala’s blog today is about finding parallels for OCD and treatment in the popular movie Frozen, specifically Elsa’s song “Let it Go.” You can read more from Shala on her blog here.
When I was a little girl, I used to daydream that I had fantastic, magical powers. I would imagine myself standing in my front yard, waving my hands in the air, making amazing things happen. I would see my friends’ faces as they stood around me, surprised, delighted, and impressed. I would think how wonderful that would be, how much everyone would like and respect me and my abilities.
I created these dreams because I knew the opposite was true. From the time I was a little girl, I knew that I had terrible powers. That I could hurt people with my thoughts. That bad things happened because of me. That I had to do special things to keep everyone I loved safe.
I understood that if anyone knew about my terrible powers, I would be shunned. Banished from society. So I kept my capabilities and the special things I did to protect people a secret, even from my parents and my best friends, because that’s how I kept them safe. I had to pretend like everything was OK and act perfectly all the time, so that no one would know, because that’s how I kept myself safe.
I just didn’t know that my terrible powers were called OCD.
Imagine my surprise at hearing Elsa, who was born with the power to freeze everything and everyone around her in the Disney movie Frozen, sing about what it’s like for her to hide her terrible powers from everyone:
“Don’t let them in. Don’t let them see. Be the good girl you always have to be. Conceal, don’t feel, put on a show. Make one wrong move and everyone will know.”
She was talking about me as a little girl! That’s what I did! What’s even more amazing to me is that the theme song from the movie, Let It Go, could not have been written any more perfectly to describe my triumph over my own terrible powers and a wonderful approach in general for beating OCD, which I’d like to share below. (Song lyrics are in italics, my notes are in parentheses).
Let It Go (and how it relates to triumphing over OCD)
The snow glows white on the mountain tonight Not a footprint to be seen A kingdom of isolation And it looks like I’m the Queen The wind is howling like this swirling storm inside Couldn’t keep it in, heaven knows I tried
(Elsa describes how isolating and alone having “terrible powers” can be as well as how hard it is to keep these powers hidden. How exhausting, demoralizing, and impossible it is to bear this heavy secret.)
Don’t let them in, don’t let them see Be the good girl you always have to be Conceal, don’t feel, don’t let them know
(This was my mantra for years, until I decided that my OCD was becoming more powerful because of my secrecy.)
Well, now they know
(So I started telling people I had OCD.)
Let it go, let it go Can’t hold it back anymore Let it go, let it go Turn away and slam the door I don’t care what they’re going to say Let the storm rage on The cold never bothered me anyway
(Then, through ERP therapy, I started letting my terrible powers out, by letting the obsessions play in my mind instead of pushing them away. I didn’t do the compulsions I used to do to protect people.)
It’s funny how some distance makes everything seem small And the fears that once controlled me can’t get to me at all
(I learned I could handle uncertainty, and that OCD didn’t have the power to hurt anyone but me, if I let it rule my life.)
It’s time to see what I can do (I kept doing more ERP…)
To test the limits and break through (and more….)
No right, no wrong, no rules for me ( and more….)
I’m free (…and I kept feeling better and better.)
Let it go, let it go I am one with the wind and sky Let it go, let it go (I learned that although I have OCD…)
You’ll never see me cry Here I stand and here I’ll stay Let the storm rage on (… it doesn’t have to have me.)
My power flurries through the air into the ground My soul is spiraling in frozen fractals all around thought crystallizes like an icy blast I’m never going back. The past is in the past
(There’s no cure for OCD, but I keep myself virtually OCD-free by doing maintenance ERP, so I can keep OCD in my past.)
Let it go, let it go And I’ll rise like the break of dawn Let it go, let it go That perfect girl is gone
(OCD thrives off perfection, so I have dropped the “perfect” persona I used to use to protect myself from others and protect others from me.)
Here I stand in the light of day Let the storm rage on The cold never bothered me anyway.
(I decided to put my knowledge of the terrible powers of OCD to good use, by helping others who also have OCD.)
ERP, along with mindfulness, self-compassion, and gratitude, is how I keep my terrible powers in my past. It’s how, like Elsa, I stay free.
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