Over the years I have received emails from people with obsessive-compulsive disorder who tell me their OCD is treatment resistant. In some cases they have been told this by a professional, and in other instances people have come to this conclusion on their own.
In writing this post, I figured it would be a good idea to first define treatment resistance in OCD. Surprisingly, I came across some conflicting information on several sites. Does it mean the patient has no improvement at all even when all proper therapies have been attempted? Does it mean there might be a small improvement but not enough to make a difference in the quality of life of the person with OCD? Does it mean nothing will ever help? Check out the definition of treatment-resistant OCD in this article:
Treatment resistant OCD is generally defined by two adequate attempts with SRIs. SRIs stand for a class of medication called antidepressants. They include tricyclic antidepressants (TCAs) and selective serotonin reuptake inhibitors (SSRIs).
While a few articles I read said that treatment-resistant OCD and treatment-refractory OCD were interchangeable terms, this one said they are very different, and went on to define treatment-refractory OCD:
True treatment-refractory OCD can only be determined if a person has tried, at a minimum, three different SSRIs at a maximum dosage for at least 3 to 6 months each (with the TCA clomipramine being one of them). They must have also undergone behavioral therapy while on a therapeutic dose of an SSRI, and lastly, have received at least two atypical anti-psychotics as augmenters while receiving behavioral therapy and taking the SSRIs.
With these varied (and somewhat vague…CBT for how long?) definitions, how can anyone be sure what their health-care providers mean when they say, “Your OCD is treatment resistant?” The above definition of treatment resistance would have fit for my son Dan, as medication never seemed to help him. But he recovered from severe OCD once he embraced exposure and response prevention (ERP) therapy. His OCD went from severe to mild and he continues to do well seven years later.
It’s confusing to say the least. So many definitions and interpretations. Most of the articles I read focused mainly on all the possible combinations of medications that could be attempted before the label of “treatment-resistant” is applied. But hidden amid the treatment options of novel medications and neurosurgery was this sentence about Cognitive Behavioral Therapy (CBT):
As stated, most OCD sufferers have not received an adequate trial of behavioral therapy, which is ultimately the most effective way to beat OCD long-term.
While I don’t deny there are people out there who truly have treatment-resistant OCD, my hunch is there are many people with this label who can be helped with the proper treatment.
A valuable lesson learned from my son’s journey through severe OCD is that you can’t always believe everything everyone tells you. Whether you’ve been labeled treatment resistant by yourself or someone else, do whatever you can to get good ERP therapy. And then do yourself a favor and read this important article by Dr. Seth Gillihan; share it with your therapist if necessary. And don’t give up! I believe there is always HOPE for those with OCD.