To Mental Health Providers: Here's What You Need to Know About OCD

Dear Mental Health Provider,

First, let me say that I commend you for your hard work and dedication to your profession. You have put in countless hours for schooling, clinical hours and for your patients. We, as a society, need you now more than ever.

Last month, we said goodbye to many new friends that we met at the 26th annual International Obsessive-Compulsive Disorder Foundation’s (IOCDF) conference. It is hard to describe just how magical the conference was. We were surrounded by so many people — those with OCD, their families, their clinicians — who understand exactly what we were thinking, feeling and going through. My husband, someone who has struggled with OCD his whole life, was hesitant to attend the conference; however within minutes, he felt right at home.

As we met each new friend and began to swap stories, it became crystal clear that many of us shared a similar, tragic tale of misdiagnosis and improper treatment. The quick version of our story is this: at an early age (around 8) my husband started struggling with obsessive thoughts that created anxiety which then led him to completing rituals or compulsions to try and reduce the anxiety. His compulsions included things like avoiding situations/people/places, excessive hand washing, replacing thoughts, bargaining and neutralizing. These thoughts and behaviors would follow him into his teens, through college and into his adult life. He didn’t seek treatment because he didn’t realize how his OCD had gotten and thought he could handle it on his own.

When I became pregnant with our daughter, his symptoms became worse. I told my husband to seek help, start going to therapy and possibly get on some medication. At this point, Chris knew that he had obsessive compulsive disorder, self-diagnosed, but neither of us knew exactly what that meant. For the next six years, he would be in and out of therapy, bouncing from therapist to therapist, on and off medication. Neither therapy nor the medication seemed to be helping, so staying consistent with either didn’t seem to make sense. By the fall of 2018, Chris’s symptoms had dramatically increased and at the end of October his OCD exploded, rendering him unable to care for himself. In what seemed like an instant, my funny, outgoing, life-loving husband became incapacitated, captured by debilitating fear and all-consuming compulsions.

Chris’s well-intended therapist suggested a local outpatient program. Within a day, we scheduled a tour and met with the program manager. Justin (his name has been changed) talked us through what the outpatient program would look like. Chris sat next to me, barely able to speak, unable to make eye contact and terrified to touch anything. Justin then went on to explain that the program did not specialize in OCD and that this might be too overwhelming for Chris. Justin suggested that we look into OCD specific care, educate ourselves utilizing the IOCDF’s website and gave us the name of McLean Hospital in Boston, which specialized in OCD specific treatment. In that instant, I went numb. I was caught off guard — there was specific, special treatment for OCD? Justin and I agreed to get Chris on the waitlist for the outpatient program as something to try and we headed to the car. Just to further illustrate how bad Chris’s OCD had gotten, it took us nearly 10 minutes to walk the 100 feet to the car, stopping often to check for possible needles that Chris’s OCD convinced him may have been in his path.

That night after getting Chris to bed, I began my OCD education via the IOCDF website. Within minutes, I discovered that there was an evidence-based therapy that is the gold standard treatment for OCD called exposure response prevention (ERP). I used the IOCDF’s search engine to find the names of some local providers.

I will skip ahead to a week later when we had our first appointment with a psychologist who specializes in treating OCD. As we sat in her office (well, Chris was standing because his OCD would not let him sit on the couch), the psychologist, who we will call Dr. B, listened to our tale. We explained that Chris had been in and out of therapy for nearly six years with therapists who said they could help him with his OCD, yet never employed ERP. Dr. B tried to hide her anger and frustration as she apologized for the pain Chris was in and that he was suffering so much. She tried to give his former therapists the benefit of the doubt, while reassuring us that Chris did not need to suffer this way and that ERP was going to help him, finally — and it absolutely has.

At the conference, we met person after person, all with a similar tale. Some were fortunate to have been diagnosed at an earlier age, yet many still did not receive ERP treatment until years later. According to the International OCD Foundation, on average it takes someone with OCD 14 to 17 years to receive proper treatment, and we can tell you from personal experience that this is absolutely true from our experiences. Here is where my plea to you, mental health provider, begins.

While I understand that it is highly unlikely that you learned or even heard about OCD and ERP in your schooling, I am begging you to educate yourself. Yes, it is true that ERP is a form of cognitive behavioral therapy (CBT), but it has a very specific protocol. Even if you don’t want to offer ERP, at least know enough about OCD to be able to properly diagnose and refer your patient to an OCD specialist who can treat them. Please, don’t tell people 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. Please do not tell the insurance company that you treat OCD when in fact you do not, as this makes it harder for true OCD specialists to get into insurance networks.

ERP is an evidence-based treatment — which means there is a ton of data and research proving the efficacy of this treatment for OCD and other anxiety disorders. ERP gave Chris his life back, gave me my husband back and most importantly gave our daughter her daddy back. I didn’t mention this before, but Chris’s biggest trigger is our daughter. When his OCD was at its worst, despite six years of therapy and medication, he couldn’t even stand to be in the same house as her as it was too anxiety provoking. His OCD had convinced him that he was going to do something to make her sick. Our 5-year-old daughter almost lost her daddy because the mental health professionals he had been seeing were not educated on OCD and ERP.

I will end with this: dear mental health provider, please remember why you entered the mental health profession — I am willing to bet it was to help people. I don’t think you are malicious or meaning to cause harm, but your ignorance and unwillingness to educate yourself is making the symptoms of people who struggle with OCD worse, costing them their jobs, their relationships and in all too many cases, their lives. You have a professional, and I think moral, obligation to properly diagnose and treat (or refer) every, single one of your patients. If you truly want to help those with OCD, then please go to www.iocdf.org and sign up for the Behavioral Technical Training Institute (BTTI). Become educated and certified in order to properly give ERP treatment.

Dear mental health provider, we are counting on you. We trust you. Our lives are literally in your hands.

If you are reading this as someone living with OCD yourself or you have a loved one who struggles with it, please know that there is hope and you can get better. You are not alone.

This story originally appeared on Living Inch by Inch