What happens once a year, makes you feel at home, and has the potential to change your life? My answer is of course the Annual OCD Conference, otherwise known as OCDcon.
This past weekend I attended OCDcon for the second time, a conference put on by the International OCD Foundation every summer. It is no easier for me to put my experience into words this year than it was last year, but I will do my best to try.
I hear so many people describe the conference with words like family, community, and home, and all of these are true. There is something so special about being with several hundred other people who understand OCD. Everyone there is either fighting OCD or helping others fight OCD. We all share the same goals of reducing mental health stigma and increasing awareness of OCD. It truly does allow you to feel “normal” for a few days, despite having obsessive thoughts and rituals. This OCD community, whether at the conference, online, wherever is something that means a lot to me and is something I will forever be grateful for.
For many, myself included, Thursday began with flight delays. I unfortunately missed the Speakers Reception and Young Adult Support Group. While this was different from how I planned to start OCDcon, it goes to show that life is unpredictable and we cannot always have control. In a way I think it was good, while ironic, that I got to begin the weekend with an exposure. It put me in the right mindset for the rest of the conference.
Luckily I didn’t get there too late Thursday night and still had some time to catch up with friends I met at last year’s conference. We even went to OCD Pub Trivia, held at a local restaurant. This was another way for me to start the weekend with exposures. I rarely put myself in such loud situations and with so many people in a small space. I’m glad I pushed myself and experienced this event, which I wasn’t old enough to attend last year.
Then is was time to get some sleep because I was presenting the next day…
I started Friday bright an early with a session entitled “The Journey from Illness to Advocacy: Overcoming OCD and Finding Your Voice.” Epifania Gallina and Bowen Zheng, who I met last year, along with Lisa Mueller, shared their stories, which all led mental health advocacy with the goal of helping others. I was inspired by their strength and all that they are each doing to provide resources and hope to individuals with OCD.
Next it was time to learn about motivation! Jeff Bell, Nathaniel Van Kirk, and Shala Nicely led a session in which they discussed the definition of motivation and strategies for increasing motivation (“Motivating Toward Recovery: Strategies for Maintaining Motivation Across Treatment and Beyond”). Two things stood out to me from this session. First, feeling anxious and feeling motivated can physiologically feel very similar. Both increase your heart rate, make your thoughts race, etc. What this means is we can use our anxiety to then motivate ourselves to do an exposure or some other daily task. The second piece that stood out to me from this session was the discussion of finding your greater good. When we are stressed, in that moment doing a ritual can feeling like the right thing to do. The speakers did not deny this. Instead what they encouraged was thinking about what not doing the ritual can lead to. Maybe you will have more time to spend with friends and family. Maybe you can accomplish a goal of yours. Whatever it is, think about what greater good can come out of not doing the ritual.
Later that evening, I went to the Young Adult Success and Mentoring Program. Several young adults explained their stories with OCD, from onset to eventual remission. Then the remainder of the session was similar to a support group. This was a particularly inspirational session because the speakers said “Sitting up here are four people who have recovered from OCD.” This visual and their stories certainly increased my hope that I can move from somewhat recovered from OCD, to an even more complete remission.
Mental Health Monologues
Then, as quickly as that it was time to speak at my session called “Mental Health Monologues: Sharing Stories Reducing Stigma.” With my close friend, Sonia Doshi, we spoke about the Mental Health Monologues show we have produced on University of Michigan’s campus for the past two years. We discussed how the show was started, explained how to put on a show like this in your community, and showed past performances. If you would like more information about this show and how to bring it to your community, feel free to contact me in the comments or via email. Additional, we have a how-to guide which explains everything we talked about and more!
During our session we showed two example performance from last years incredible show. Rachael spoke about depression in her monologue “Rules for Writing Poetry.” Raivynn shared her experience with anxiety, and stigma as a result of her ethnicity, in her performance “It Gets Better and Other Bad Advice.” Lastly, I performed live my monologue about OCD I wrote for the monologues show two years ago. It is titled “Superpowers.”
I’m incredibly grateful I had the opportunity to speak at this conference and to share this show with others. The IOCDF and the Mental Health Monologues are two things I love dearly. Overall, I think our session was received positively by those in attendance. I speak openly about mental health and OCD because I want to help others, and to have others tell me my story helped them means a lot to me. I’m looking forward to continuing the Mental Health Monologues next year, and for future collaborations as a result of the conference.
After our half of the evening session, comedian Dean Marsello performed part of his one-man show “I’m So OCD.” It was raw and truthful about how difficult OCD can be, while also hilarious.
One event held every year at OCDcon I recommend to everyone is Virtual Camping. During virtual camping Jonathan Grayson, along with several therapist helpers, leads a group of several hundred people around the city and hotel to do exposures together. These exposures are fast-paced, adrenaline-inducing, and outright fun despite being stressful. Some examples include walking with knives through two close lines of people, throwing out papers and lists people were hoarding, shouting at cars to “Crash and burn!,” and the infamous eating a Tic Tac off a toilet.
No one ever said doing exposures is easy, but I can say it is easier when you do it as a group. It is so motivating when you see someone pushing themselves to face a fear to then push yourself to face one of your own fears. We are in it together and encourage each other throughout the process. During virtual camping, no one forces you to do anything you don’t feel comfortable doing. The amazing part though is how much farther people push themselves than they expected, because we are doing it together.
Saturday was another jam-packed day of attending sessions and spending time with friends. I attended sessions on a variety of topics, rather than following just one track. (At the conference you can follow specific tracks of talks such as individuals with OCD, therapists, hoarding, young adults, and PANDAS-PANS, just to name a few.)
One of the talks I attended was led by fellow OCD blogger Ellen, along with the energetic and incredibly friendly Neil Hemmer and Jessica Kotnour (“The Best of Times, the Worst of Times: Being in High School with OCD”). These three young adults talked about their journeys with OCD and what helped them, especially in high school which can be a difficult time for many. I enjoyed the advice they gave, and I’m sure the middle schoolers and high schoolers in the room found it helpful! Plus they handed out self-care bags!
Another of my favorite talks on Saturday was all about taboo intrusive thoughts in OCD. The speakers were Allison Dotson, Chrissie Hodges, and Sean Shinnock (“Multiple Perspectives on Taboo Intrusive Thoughts: Q&A with Former Sufferers”). These individuals talked openly about their experiences with thoughts and fears related to harming others, being gay, or being a pedophile. This was a very important talk because these are fears many people with OCD experience, but they are not often talked about. Allison, Chrissie, and Sean are doing something incredible by putting these aspects of OCD out in the open, and are likely helping many suffering in silence.
Saturday evening meant it was time for the Keynote Address, Awards Ceremony, and Saturday Night Social!
Davin Adams gave a powerful Keynote Address about the day he remembers his OCD starting, the progression of his OCD worsening, and his subsequent recovery and “accidental advocacy,” as he calls it. David recently published a book called The Man Who Couldn’t Stop: OCD, and the True Story of a Life Lost in Thought if you’d like to read more of his story.
At the Saturday Night Social, the IOCDF hands out several awards to individuals who have made great impacts in the OCD community. The author, youtuber, and one of my favorite people John Green received the Illumination Award. He received this award for his openness in talking about his OCD and the impact that has had. Because I am a nerdfighter (nickname for people who watch John and Hank Green’s videos) I was totally fangirling during John’s recorded acceptance speech. As we nerdfighters say, don’t forget to be awesome!
Additionally, Alison Dotson received the Hero Award. As I mentioned above, her openness in talking about taboo intrusive thoughts is inspirational and surely helping many people. I have been reading Alison’s blog since around the time I was first diagnosed with OCD, and agree her award was well deserved. She is also the author of the book Being Me with OCD: How I Learned to Obsess Less and Live My Life.”
After the awards ceremony, I ran over to the screening of UNSTUCK: An OCD Kids Movie. Just about all I can say about this project even from the few minutes of the movie we saw is WOW. The movie features several children with OCD and their families. They talk about some fears and compulsions they have dealt with, showing very honestly what OCD is like in children. Moreover, they talk about the incredible successes they have achieved through exposure and response prevention therapy. All of the children involved are genuine, well-spoken, and of course brave. I think this film could do a great deal to help other families struggling with OCD, and to raise awareness to a larger audience. I highly recommend checking out and spreading the word about this film!
Then I ran back to enjoy the last of the Saturday Night Social and to dance with my fellow OCD warriors! There’s nothing like twisting your hips to “I Will Survive” with 50 other people with OCD.
To end the night, I had a little adventure unrelated to OCD. Coincidentally this Saturday was also the release of the latest Harry Potter Book, Harry Potter and the Cursed Child. With my good friend Epi, who I met at last year’s conference, we went to the midnight release at a local bookstore. While I enjoyed my time immensely at the conference, it was fun to go do something related to other aspects of our lives, besides just OCD and advocacy. As part of recovering from OCD it is essential to rediscover your other interests and values. People with OCD are people first, who should not be defined by OCD. We just also happen to have OCD.
Then of course, Epi and I (who were rooming together at the conference) stayed up way too late have deep talks about life, as you do at two in the morning.
On Sunday I had one main goal: give blood as part of the USC research study looking for a genetic marker for OCD. I have had a phobia of blood since I was a little kid. Because of this I avoided blood draws whenever possible, and if I absolutely had to do it I would end up hyperventilating so much I would just about pass out. But that was in the past. As part of my residential treatment I spent several hours working on this fear by looking at pictures of blood, watching videos of blood draws, and watching videos of people making blood slides. As someone who wants to study parasitology, looking at blood is something I know I have to be able to do.
With this opportunity to give blood at the conference, I was curious to see if my phobia had improved. I also felt I hadn’t done a huge exposure yet while at the conference and I decided this was going to be my big exposure of the weekend. I was motivated by my greater good: helping OCD research and working toward a parasitology career. So on Sunday, I committed to it. I went down to the room where they were taking blood, filled out the forms, and gave blood. Sure I was terrified, sure I was crying, and sure I needed Epi to hold my hand, but I still did it and my reaction wasn’t as bad as previous blood draws! I’m incredibly proud of myself for facing this fear. This was one of those exposures I can’t quite believe I volunteered to do, but in the end I’m glad I pushed myself.
The last session I attended was “Back to ‘Reality!’ Gearing Up for Life After the Conference PODCAST. This allowed attendees to discuss their experiences at the conference and to reflect on the weekend.
And then suddenly it’s time to go home.
Having to leave OCDcon is an emotional experience. Three days doesn’t feel like long enough to spend together. While the community can stay in touch throughout the year virtually, it isn’t quite the same as being together in person. The important thing is it’s okay to be sad about leaving. As I’ve learned in therapy, it’s best to feel our emotions rather than push them away.
Though it is sad to leave one another, there are of course many positive things that came out of the conference. I got to catch up with friends from last year and meet new friends. I’ve refreshed my knowledge on treating OCD. And lastly, I feel inspired and revived by everyone who was there to keep doing exposures. Before the conference, my OCD was fairly well controlled, but I had been noticing my symptoms starting to worsen again and slide backwards. The conference came at the perfect time and was just what I needed. I feel a great deal more motivated now to keep pushing myself and to keep fighting for full remission. It’s like my gas tank of ERP motivation has been refilled. Now that I’ve seen again just how powerful this conference can be I’m really hoping I can go again next year.
Only 337 days and counting! See you in San Francisco!