Raven* is exasperated. The feeling swells in her before the words come out. Tears of frustration born from years of suffering well up in her eyes as she struggles to wrap her mind around this .
“But why?” she asks. “Why didn’t anybody tell me about the right treatment for this? Why don’t you guys do a better job of getting the information out there?” She is pleading for me to help her make sense of something almost as unthinkable as the thoughts that torture her mind.
Raven has Obsessive-Compulsive Disorder (OCD). She’s the newest member of the free support group I run for adults with OCD. Hers is a story I’ve heard time and time again. She’s been terrorized for years by horrific and vivid thoughts and images. It’s meant time lost from work, time taken from her family (and from being a mother), hospitalizations, murmurings of psychosis. It took years to get a proper diagnosis, and years (and many treatment providers) after that to discover that there’s actually a treatment of choice – an actual best practice.
As the facilitator for this group, and the only representative of the professional mental health community, I struggle to explain to her, and the rest of the group members, about the disagreement in the mental health community. I try to explain the complexities where there really ought not to be any. But any words that come out of my mouth fall short. Thankfully, the group, and Raven, have shifted to a different focus.
My mind, however, has not moved. Raven’s question is simple and honest. She wants to know why, when she was diagnosed with OCD, she wasn’t immediately referred to a mental health provider who specialized in the most effective therapy for OCD – Exposure and Response Prevention (ERP), a type of Cognitive Behavior Therapy. That I am grasping for a reasonable answer taunts me. And the absurd realization that washes over me in this moment leaves me feeling embarrassed and ashamed, even unworthy of sitting in this room of brave OCD sufferers. We providers in the mental health community are not all trained to send people with OCD for ERP therapy.
An Open Letter
I rolled this issue around in my mind as I attended the 26th Annual OCD Conference in Austin, Texas. I spent an evening networking and brainstorming with other mental health professionals and advocates determined to further the cause of getting effective education and treatment to those who need it. Then something came my way that stoked the fire and increased the sense of urgency. It came in the form of a blog post that kept popping up in my social media feeds. I finally found time to click on it and read, unprepared for the emotional reaction that would ensue.
The post, titled “An Open Letter to Mental Health Providers,” by Jodi Langellotti is an impassioned plea to mental health providers from the wife of a longtime OCD sufferer. In it, she outlines the years her husband sought treatment for his OCD, going in and out of therapy and from therapist to therapist with nothing seeming to help. It wasn’t until six years into the process, when her husband, Chris, was “unable to care for himself” that a clinic program manager mentioned to the couple that there was actually treatment specifically for OCD and directed them to the website for the International OCD Foundation (IOCDF). On her own that evening, Jodi searched the IOCDF site and discovered the treatment that would begin the road to her husband’s recovery.
After sharing her family’s journey, Jodi implores mental health therapists to get educated, get properly trained, and to refer if they do not have proper ERP training. ” I am begging you to educate yourself,” she says. “Please, don’t tell people that you can help them with their OCD when you have had no specific training in treating this unbelievably complex and debilitating disorder. Please do not employ other forms of therapy which can actually make OCD worse, thereby increasing the suffering of your patient.“
Reading Jodi’s words tears me apart. It infuriates me about my mental health community, and it emboldens me at the same time. The IOCDF notes that “It takes an average of 14 – 17 years from the time OCD first appears for people to receive appropriate treatment.” (1) There is absolutely nothing that is acceptable about this. Specific treatment exists and the majority of those who receive appropriate treatment “will benefit from therapy, medicine, or a combination of the two.” (1) So why do mental health providers not refer those with OCD for ERP therapy? This is where it gets absurd.
We Aren’t Taught About the Best Treatment
Most mental health providers are not trained in graduate school on how to treat specific disorders, at least I wasn’t back in the late 1980’s and early 1990’s. I was trained on what the different disorders looked like, how they presented, and how to diagnose them. Instead of specific treatments, I was presented with theory and theoretical orientation. Choose the theory that best fits for you and approach mental illness accordingly. The problem with approaching mental health in this manner is that it is devoid of what I was taught as a practitioner-scientist. I wasn’t taught to go on “hunches” or what “fits” my way of thinking. Rather, I was taught to test hypotheses and follow the evidence – and the evidence overwhelmingly shows that ERP is the best treatment currently for OCD. Yet, the theoretical approach to practice persisted.
“Well,” you may be thinking, “she went to graduate school thirty years ago. Surely things have changed.” That’s not what I’m hearing. Shala Nicely, LPC, an OCD therapist, sufferer, and author, shares her experience in graduate school within the current decade in her personal memoir, “Is Fred in the Refrigerator? Taming OCD and Reclaiming My Life.” Astonished at the lack of information on treatment in the “Diagnostic and Statistical Manual of Mental Disorders,” she asked her professor where she might find a listing of of the types of therapies to treat disorders.
“There isn’t one,” she was told, “There isn’t agreement in the field about the best way to treat any of these disorders.”
Recent years have seen the emergence of “evidenced-based practice” in the field of psychology. Basically, this means practicing according to what research demonstrates works best. But this has not seemed to stop the adherence to theoretical dogma. Those of us who do ERP for OCD or who stand up for its efficacy frequently face challenges from our theory-bound colleagues. When I took Blake to an ERP trained specialist more than a decade ago, I was questioned by one psychologist about whether this “stuff” my son’s therapist was “doing actually helps.” My own psychologist at the time, a trained psychoanalyst, informed me that my son wouldn’t get better until the “underlying issues” were uncovered. But he WAS getting better before my eyes.
In the towns and cities where we practice, ERP providers are frequently one of very few. We are sometimes regarded as doing “crazy” work or torturing our clients, or we are told that we are only putting a band-aid on a gaping wound and that there is sure to be “symptom substitution” when our work is put into practice (in reality, that is NOT the case). On Facebook forums for therapists, we bear witness to endless misinformation about what causes OCD or what will be helpful to OCD sufferers. When we stand up for what the evidence bears out, we are frequently mocked or dismissed with statements such as “In my opinion…” as if the research on what hurts and helps in OCD can be dismissed by opinion. (Thank goodness for the amazing group that popped up on Facebook in this past year to support those of us who practice this work – but I digress).
I do not write this to disregard the numerous mental health practitioners who recognize best practices for treating OCD, or the increasing numbers who are clambering to get trained to do the work (as evidenced by the IOCDF’s Behavior Therapy Training Institute regularly selling out in minutes). I am acknowledging that not providing training on best practices in graduate schools, and having theoretical battles while ignoring what data tell us is having dire consequences for consumers and for mental health providers, alike. As Shala Nicely so eloquently noted in her memoir:
“It was a chasm that unfortunately swallowed two innocent groups: mental health professionals, who could leave graduate school unaware of how to effectively treat people with OCD or other mental disorders, and clients with mental illnesses who, like me, could suffer needlessly for years, even decades, as a result.”
Time for an Uprising
As I ponder Raven’s question, I am aware of the divisions that exist in the mental health community. It is reminiscent of political parties sparring over ideological systems while action languishes. There is no room for it while people suffer, yet still it exists. Like Jodi Langellotti, I implore my colleagues and the educational institutions that train us to take the important steps: teach the best treatments and refer to providers who provide them. General practitioners refer to cardiologists and oncologists, specialists, when needed. Mental health ought to be no different.
But I fear that my field will not change unless it is demanded by the public. So to all who read this, recognize that you have power, too. We may need an uprising of sorts – a grass roots movement. Do not believe you must wait for mental health to change itself. Speak up to your general practitioners and your pediatricians. Speak to anyone you know who refers for mental health services. Tell them that OCD must be treated by a specialist in ERP. Take documents from the IOCDF, the Peace of Mind Foundation, the Anxiety and Depression Association of America (ADAA), or the practice guideline from the American Psychiatric Association (2) with you.
Those of us in the trenches doing the work of treating OCD using the treatment demonstrated to have the best impact will keep doing our part to spread the word. But we are buoyed by the informed voices that come from the public. We are energized when we see you posting during OCD Awareness Week, when you show up at OCD Walks, when you host screenings of movies like “Unstuck: An OCD Kids Movie,” or when you tell your story on the news, in a book, in an article, or in a simple social media post. It’s long past time for a change. I don’t want to keep listening endlessly to stories like Raven’s. I’m ready for stories of, “I was just diagnosed with OCD and my doctor knew to send me to a specialist.”
“An Open Letter to Mental Health Providers”: https://livinginchbyinch.com/an-open-letter-to-mental-health-providers/
International OCD Foundation: https://iocdf.org/
Is Fred in the Refrigerator? Taming OCD and Reclaiming My Life – by Shala Nicely: https://www.amazon.com/Fred-Refrigerator-Taming-Reclaiming-Life/dp/1732177007/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=
(1) International OCD Foundation Brochure – What is OCD?: https://iocdf.org/wp-content/uploads/2014/10/What-is-OCD-9-25-17.pdf
(2) American Psychiatric Association, “PRACTICE GUIDELINE FOR THE
Treatment of Patients With Obsessive-Compulsive Disorder”: http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/ocd.pdf
*No real names of group members have been used.