Ethan Smith is one of the busiest advocates out there! We’re lucky he was able to carve out some time to talk about his latest projects and what he’s doing to offer support in this unpredictable climate. Thank you for everything you do for the OCD community, Ethan!
Ethan, it’s been a while since you shared your story with us! You’ve been busy with several different projects, but let’s start with your role as National Ambassador for the International OCD Foundation (IOCDF). What does a national ambassador do?
Great question! Technically I’m the first, so I can only answer based on my own experience. So far, it’s talking about OCD. A lot! Which is perfect since that’s the impetus behind my advocacy anyway. Honestly, the IOCDF has really granted me the leeway to make the role whatever I’ve wanted it to be. Originally, it was meant to replace the spokesperson role. Be the front-facing media representative for the IOCDF, as well as lead the ambassador and ocdvocate programs. Which I do, but in addition to, I’ve been involved in a variety of discussions and decisions with the IOCDF that directly impact all advocacy programs as well as supporting the community through lived experience advocacy. I’m very grateful the IOCDF includes and involves me as well as values my input as we continue to evolve and grow the role.
Tell us about your live series, “Just, Ethan.”
I have to give credit where credit is due. I’ve really enjoyed Liz McInvale’s “Live With Liz” streams on FB. So I too wanted a way to further connect with the community. So in September of 2019, I pitched the idea of doing a live stream similar to Liz’s. We launched in October during OCD Awareness week. Candidly it’s a purely selfish endeavor. Probably my favorite thing to do as both an OCD sufferer and OCD advocate is connect with the community on a very personal level. Hear their stories, tell them mine, and share ideas, skills, and tools that I’ve found helpful in my own recovery—Just, Ethan gives me that very opportunity. I truly love the live streams and the ability to reach people all over the world. It’s a collaboration and we support each other. It’s quite wonderful.
With so many people staying home to slow the spread of COVID-19, the IOCDF has been hosting a series of virtual town halls on several OCD-related topics. How can people get involved?
The town halls definitely were birthed out of the COVID-19 crisis. One of the silver linings? The IOCDF always planned to provide continuous virtual programming and were in the process of developing. But necessity is the mother of invention and with COVID-19 quickly developing and impacting the OCD community in such profound ways, both in symptoms and stigma, there was no time to waste. We immediately started discussing ways in which we could support the community during this time, and Town Halls were born. We also found it necessary to support clinicians, as we’re all humans and all being impacted by this. So we also began a series of clinical town halls to support clinicians so they could continue to support their patients in effective and healthy ways. As well as move their practices to all virtual. If people want to get involved in town halls or future IOCDF virtual programming, they can email me anytime at JustEthan@IOCDF.org and we can discuss further. Any and all ideas are welcome. I love collaborating with community.
You just did a great interview with The Hill about OCD and COVID-19—I keep seeing advice to “be OCD” about handwashing and staying inside. What are people getting wrong about OCD?
The mainstream media and the public are quickly making the assumption that it’s the compulsions themselves, such as handwashing and being overly vigilant when it comes to germs, that makes the OCD community more adept at handling this crisis and less at risk for contracting the illness. Of course this stems from the misunderstand that OCD is just contamination and hand washing. Which we work daily to combat that stigma. What we’re trying to explain to the media and public is: 1. OCD is so much more than contamination. That it’s comprised of a variety of subtypes ranging from harm to religious OCD as well as intrusive violent and sexual thoughts. 2. For non-OCD sufferers, COVID-19 is a small glimpse into what it’s like to have untreated OCD, thinking through moves and actions throughout your day, whatever you may or may not have touched, when to wash your hands and sanitize, and experience the anxiety that typically accompanies the the lack of certainty. 3. Finally, we’re working very hard to explain that it’s not the compulsions that make the OCD community perhaps better at managing during this time, but it’s the treatment (ERP, or exposure response prevention) that provides the skills and tools that give OCD sufferers the advantage when coping with the unknown.
A truly beautiful project you’ve put out is the documentary about OCD, “Uncovering OCD: The Truth About Obsessive-Compulsive Disorder.” What was it like gathering these incredible personal stories about OCD? What has the response been like?
Thank you for bringing this up and for the kind words. The documentary was a beautiful culmination of brave individuals telling their OCD stories in honest, raw, and vulnerable ways. It would truly not be as powerful as it is without all the advocates who appear in it. The original purpose was to educate health experts who don’t normally interact with the OCD population. But as we heard the stories and began the post-production process, we knew we had something very special and we had to share it publicly. If for no other reason, to teach the world what real OCD looks like from the individuals who suffer and that have overcome. The response has been incredible, from both the OCD community and beyond. The documentary is being used a variety of ways, both in professional and personal settings. At the end of the day, I’m just glad there is another resource that exists to help facilitate a better understanding of what OCD is and how it impacts sufferers. Whether it’s teaching clinicians about the disorder or a teenager using the documentary to explain to their parents.
This is the first time I’m saying this publicly, but my team and I are in the very infancy stages of making a full length feature documentary on OCD based on the success of this one. You heard it here first!
Alison Dotson 