by Jonathan Hoffman, PhD, ABPP
Most people in treatment for OCD make steady and meaningful progress. But for those who do not, treatment can be a daunting experience for all concerned – the person dealing with OCD, their loved ones, and even the treating provider(s) or program. If you or someone you care about with OCD is not benefiting from treatment, it’s important to open-mindedly explore why, and be solution-focused, while being careful not to fall into the “blame game.” No one should be seeking to blame anyone else for a lack of progress. This is hard stuff.
Let's look at the role of expectations. Unrealistically high expectations are associated with perfectionism, a common feature of OCD. Perfectionists tend to think of anything less than complete success as failure, go down a rabbit hole of needing to know every minute detail of treatment in order to proceed, or become stuck on how to tell when treatment is "complete." Perfectionistic expectations can result in people counterproductively disparaging themselves for their lack of progress or holding treatment to unrealistic, perhaps impossible, standards. Some perfectionists may do both at the same time.
On the other hand, people with unrealistically low expectations for OCD treatment often just do not give it a chance. Perhaps some of these folks may be trying to protect themselves from disappointment. Unfortunately, having a low-expectation mindset may set people up for OCD treatment failure, like a self-fulfilling prophecy. It may be of interest to know that having moderate expectations appears to be characteristic of individuals who do relatively well in most endeavors. Moderate expectations for progress help people in OCD treatment be more patient with themselves and others and stay the course despite the usual bumps along the way. However, it might also be possible that coming to OCD treatment with zero expectations, just a willingness to work hard at it, might be best of all.
Another consideration for when progress fails to occur is that evidence-based treatment for OCD is lacking or is not being conducted effectively. Although other kinds of Cognitive-Behavioral Therapy (CBT) can be helpful in some instances, it is important to make certain that there has been a sufficient trial of exposure and response prevention, the gold standard CBT treatment for OCD. It is also key to confirm that the proper medications for OCD are being utilized and that any OCD medications that are on board, usually SSRIs like Prozac or Luvox, are being prescribed according to best practice standards, as well as being taken consistently as prescribed.
Individuals with severe or complex OCD often do not make progress until CBT/ERP and medications are combined and/or they are being treated at the right level of care. Some people require more intensive or structured treatment in order to make progress, while others may respond more when the treatment schedule is less rigorous. Therefore, it is essential to tailor OCD treatment to each person’s unique needs and circumstances - no one remedy is right for everyone.
Having one or more OCD comorbidities (additional diagnoses) is common. However, if they are not identified or adequately addressed either therapeutically or medicinally, or both, progress in OCD treatment may be more likely to come to a stall. Some examples of typical OCD comorbidities are depression, tics, attention-deficit hyperactivity disorder (ADHD), autism, and personality disorders.
The same applies to having problems that complicate OCD treatment, including stress, trauma, lack of sleep, a poor diet, addictive behavior or being accustomed to one’s OCD symptoms being overly accommodated by parents, partners, or others. Sometimes an individual may not be making progress because they are not fully understanding the treatment approach due to a learning disability (LD) that was unreported, missed, or not taken into sufficient consideration. Many individuals who seem to be at an impasse regarding treatment progress begin to improve once such issues are brought into focus.
It must be recognized that when the provider(s) or program does not match up well with a specific individual, a lack of progress may also result. If you or a relative believes this is what's happening, it is very appropriate to seek other options. However, before making any drastic changes keep in mind that, ironically, the most effective provider or program might be the one from which those with OCD most wish to escape.
There are a small number of people called non-responders, or treatment-refractory, who seem to have done everything under the sun regarding CBT and medications that work for most people with OCD without success. When faced with this difficult situation, it may be time to carefully consider some other avenues for treatment that exist, with emphasis on the carefully, as many of these options remain in the investigational stage.
However, as my colleague, Dr. Dee Franklin, says, “most of the time, treatment responders are treatment followers.” Accordingly, before jumping to any conclusions about being an OCD treatment non-responder, answering this simple question forthrightly may be helpful: “Have I (or a loved one) adhered to the recommended treatment plan?” If the most truthful answer is no, it may not be a case of treatment non-response but more one of being a treatment non-participant, which is an entirely different matter. It can be murky at times, but still, it is important to accurately differentiate treatment non-responders and treatment refusers to ensure that the proper approach is taken.
It seems reasonable to ask why given its inherent challenges anyone would chose to engage in OCD treatment if they didn’t have a darn good reason to do so? Short answer, they probably wouldn't. While OCD treatment is designed to “pull you along,” it would not be wise to underestimate the importance of a person with OCD having a strong inner drive pushing them forward. Not having a compelling enough reason to engage in OCD treatment may explain why some individuals do not make progress. For some people, a compelling reason for OCD treatment is that they have lost a job or relationship and do not want to lose anything else. For others, it may be the hope of a better life or aligning with being courageous as a core value that they have made a commitment to live by. OCD treatment inherently involves the difficult task of facing fears.
If someone hasn’t yet found a compelling reason to engage fully with OCD treatment, investing some time and effort in finding one that is meaningful for them, whatever it may turn out to be, can be the secret sauce of success. Sometimes discovering a compelling reason for OCD treatment arrives in the flash of an “ah ha moment,” other times it arrives as the cummulative result of a series of small "ah ha's" or emerges gradually without any specific "ah ha's" from consistent participation in treatment over time.
Finally, some people do not make progress in OCD treatment due to fear. They could be afraid of what OCD will do to them if they stop listening to its orders, or they might be fearful of how much anxiety OCD treatment will evoke. Sometimes fear is covered up by denial, excuses, inexplicable physical symptoms, resistance, or dropping out of treatment. In other instances, the individual's fear is right on the surface. However, certain individuals may manifest a confusing combination of various types of fear responses. Fear of both OCD and its treatment is natural. The key is to learn how to understand and manage this fear, not be controlled by it.
Do you identify with one or more of these possible reasons for OCD treatment not progressing in regard to yourself or someone else you care about? Or, perhaps this article stimulated you to think of a different explanation. Either way, it may be helpful to share your thoughts on this issue with the treatment provider(s) as soon as possible. After all, that's what they’re there for, right?
But even when OCD treatment does not appear to be working, it is important to stay hopeful and seek answers. Having more awareness about obstacles to making progress in treatment creates opportunities for overcoming them. The world is full of people who thought that succeeding in OCD treatment was not possible for them or a loved one – until one day, it was!
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