How OCD Treatment Needs to Change: A View from Both Sides of the Couch

(Over the past year, I’ve been part of a private chat group of psychotherapists who suffer from OCD ourselves. We’ve compared notes, advice, treatment strategies (and lots of funny memes) in an atmosphere of mutual respect and support. More importantly, we’ve built a growing sense of advocacy as we’ve gotten to know each other. In that spirit, I’d like to share some of my own story with OCD treatment, and where I feel the profession needs to go.)

Hi! My name is Rich. I am a therapist who has both treated and suffered from obsessive-compulsive disorder (OCD) for many years, and this is my story.

First, a quick introduction. I consider myself a hardcore CBT therapist who specializes in treating anxiety disorders and OCD. I am a graduate of the IOCDF’s intensive Behavior Therapy Training Institute (BTTI), have trained over 100 clinicians on OCD diagnosis and treatment, published a refereed poster paper on my own approach to ERP in 2018, and have successfully treated hundreds of people for anxiety disorders.

In addition to becoming a therapist in my 50s, I was also a successful author and public speaker on communications skills and customer service. And I have quietly suffered from OCD myself for much of my adult life, and have personally benefitted in the past from its primary treatment strategy of exposure and response prevention (ERP) – until recently.

My own OCD story

Most of my experience with ERP was on the therapist side of the couch. But in recent years, I had a very eye-opening experience with my own OCD treatment. And frankly, not a good one.

A little over three years ago, I found myself suddenly retired from a very successful career in the public eye, when I was diagnosed with a heart condition and put on a medication that plunged me into the worst depression of my life – which in turn, severely escalated my own lifelong contamination OCD symptoms. My fears take the form of disgust – I am not worried about illness or harming others, but rather never feeling clean enough and not sleeping – a fear which, unfortunately, has sometimes come true.

Because I was fairly well connected in the OCD community, I ended up seeing two ERP specialists with rock-star credentials. They were not bad therapists – in fact, their treatment was very much aligned with how they both had been trained. But in my case, so-called best practice OCD treatment ultimately left me housebound and traumatized.

I’m not going to get into the weeds about my own treatment, but a quick summary was that as we did exposure therapy, my anxiety diminished but my disgust did not, and I became increasingly revulsed by everything I touched. It was like smearing dog poop on everything you own, trying to get used to it, and discovering you can’t – and the more exposure I did, the more closed in I felt. And the response from my therapists was generally to keep doing more exposure.

One day I finally encountered a perfect storm of my worst fears – something that made me feel hopelessly contaminated and couldn’t be cleaned up. Predictably, I was told to do more exposure, with the result that I was soon sleeping 2-4 hours a night and couldn’t drive or leave the house, at which point I was gently told that nothing more could be done for me. I was now officially a “treatment failure.”

Thankfully this wasn’t the end of my story. I eventually connected with a very talented OCD therapist who finally believed me about ERP not working, and we spent months discussing strategy and trying things. I also reviewed the literature and discovered numerous studies showing that ERP wasn’t particularly effective for disgust, that it didn’t tend to habituate, and that gains from ERP were not durable. (1,2,3)

Eventually we hit on a real breakthrough – the idea of judiciously using safety behaviors to enable lots more practice in situations where disgust triggers didn’t habituate, where the exposure was to the situation and not the trigger. And more importantly, to practice functioning better comfortably versus learning to tolerate distress.

My analogy for this approach is a new mother disgusted by poop – the exposure isn’t to learn to hold a lump of poop in her hand, it is to get used to changing her baby. And in my case, it worked surprisingly well. My mood gradually lifted, I started working and traveling again, and eventually I wrote up my findings as recommendations for a new treatment protocol for disgust-based OCD. Still later I discovered that there is emerging literature support for this approach as well. (4,5)

Around this time, I also became part of a private chat community of clinicians with OCD and discovered something amazing – I wasn’t alone. We compared notes and discovered that many of us had had bad experiences and outcomes with our own OCD treatment. We chatted regularly, did paid group consultations with experts, unfailingly supported and respected each other, and eventually became close friends. And while I do not speak for the group, I and many of us are now firmly convinced that this profession must change.

How the profession must change

As a result of not just my experiences, but the shared experiences of this community, I would like to take public what many of us are talking about privately – how this profession needs to evolve from here to serve EVERY sufferer of this terrible disorder. Here are my thoughts:

1. We must stop proselytizing ERP and distress tolerance approaches as the only treatment strategy for OCD. We all still believe in ERP. We also feel that titrated properly, it is still a humane and appropriate first-line treatment strategy. We all believe in science. But according to the literature it still fails 40% or more of sufferers, and we have personally seen cases – sometimes our own – where “best practices” have been cruel and traumatizing. There is now a growing sense that for those of us in that 40%, our suffering matters too.

2. We must never blame clients for the failure of our methods. Our profession’s current messaging is frankly harmful to many sufferers, and is particularly shaming and disrespectful to people who bravely try and fail ERP. But for everyone – even the sullen adolescent who refuses to engage in treatment – we need a fresh approach to treatment strategy and motivation. As one colleague put it recently, “the rat is always right.”

The very nature of ERP sometimes tacitly encourages an ethic where clients are pushed and “motivated” to engage in an uncomfortable treatment strategy – and in the process, we have too often personally seen cases where this generalizes to shaming or not listening to clients in the name of “evidence based treatment.” And as excited as we collectively are about newer approaches, they too must be careful not to fall into a one-size-fits-all “you aren’t doing our approach right” mindset.

3. Our research agenda needs to evolve. There have been exciting developments in OCD treatment recently, particularly in areas such as third-wave approaches and others. But much more work, and more importantly more of a focus on treatment acceptability, is needed here.

In the process, it is time to stop weaponizing terms such as “evidence-based” and “gold standard.” In particular, it is time to draw a line between approaches that have not been shown to be effective for OCD – ranging from ineffective therapies to quack cures and pseudoscience – versus approaches with emerging research that we need to be talking about more. And we need to promote the idea that competent OCD treatment involves a smorgasbord of approaches tailored to each client.

There is also an important access-to-care issue here that we rarely talk about. We are a small fraternity among a much bigger world of general therapists who do not practice appropriate first line treatment or triage for OCD. Many of them openly dismiss our community as rigid, dogmatic, and disinterested in treating the whole person. Still others remain squeamish about adopting what they perceive as a painful treatment approach that too many people “flunk.” We have talked for years about “educating” them, but in my view, real change will only happen as we research and disseminate palatable, well-tolerated treatment approaches for OCD to the general community.

4. We deserve a seat at the table. While I do not speak for all of us, there is a surprisingly large private community of therapists with lived experience who share the views I am expressing here. Our voices deserve to be heard – in the town halls and podcasts, in our official messaging, at our conferences, and in the research and funding agenda for OCD.

This also means screening our messaging and conference presentations for bias – from any treatment approach – that there is only one way for sufferers to get well, and promote the IOCDF and our community as safe and welcoming places for dialogue on how EVERY sufferer can find hope and recover. I personally want to thank IOCDF Executive Director Jeff Szymanski for supporting dialogue on this issue, and I hope to see more people in our community get on board with opening the tent to new voices.

In closing

I would like to close with a word to my fellow sufferers, therapist and lay person alike. A big factor in my own recovery has not only been the right treatment strategy, but the importance of each other. Our journey to getting well not only takes place behind the closed doors of our own therapists’ offices, but collaboratively as a community.

I want to invite every sufferer to join the power of this community. Respect science, but don’t just listen to experts. Teach us what works for you. Keep up with the literature and help us move it forward. Compare notes with people and get support. Don’t ever let anyone shame you or take your hope away. And above all, never give up. Thank you.