What if this is not OCD?: Doubting the “Doubting Disease”
by Jordan Levy, Ph.D. & Tatyana Mestechkina, Ph.D.
When individuals living with Obsessive-Compulsive Disorder (OCD) engage in treatment, they commonly report experiencing obsessions related to the diagnosis, the treatment, or even about the therapist. Therapy-related doubts are ancillary to core OCD-related fears such as a fear of germs, harming others, or being responsible for something bad happening to a loved one.
OCD is sometimes nicknamed “the doubting disease.” This is because a low threshold for doubt and uncertainty is the hallmark feature of OCD and present amongst all themes. Just about every individual with OCD questions at various points whether what they are experiencing is something other than OCD, sometimes desperately assessing “evidence” for this. OCD is powerful, deceptive, and extremely effective at convincing someone that they may not have OCD. Patients may even try to convince their therapist that they do not have OCD. It is important to note that if you were absolutely convinced that you had OCD all the time, then you probably would not have OCD. No one can be 100% sure what they are going through is OCD, even after receiving a diagnosis, reading an article that describes their symptoms to the tee, and being in an OCD support group with others who are sharing very familiar stories. Despite being generally confident in the OCD diagnosis, a thought starting with “what if...” is never far behind. The core feature of OCD is the intolerance of doubt and uncertainty so it is only natural that the brain will crave absolute certainty about the diagnosis, the therapist, or the therapy itself. The purpose of this article is to shed light on some common OCD traps that patients often experience throughout their treatment.
What if...this time is different?
Often those living with OCD discuss how OCD “feels real” in the moment. When they are swept up by the emotion of the OCD episode, they lose the clarity and objectivity they had before being triggered. The fear of this particular intrusive thought or urge being different or “the real thing” can set in quickly. This is probably the most common “OCD trap” we see with our patients. This is a sneaky way the brain can try to put the spotlight on this particular thought, image, or urge. OCD attempts to convince them that this time is different, thus “requiring” compulsive action. While there may be actual variations in the content of the theme, it is beneficial to step back, look at the bigger picture and identify some red flags that indicate this could still be OCD such as intrusive thoughts and feelings, a strong sense of urgency, a low threshold for uncertainty or endless repetition. If any of these are there, the skillful response is to identify the common denominators between this and other OCD experiences and to also treat this version of the OCD episode as irrelevant. Additionally, being proactive by formulating an action plan and doing exposures can help someone be more equipped to handle any episode, regardless of level of intensity.
What if...I am the only one in the world experiencing these thoughts?
Experiencing OCD can feel very isolating and confusing. People also can experience stigma and shame. Many even believe that they may be the only one experiencing their OCD theme. However, you are not alone. Most people experience intrusive thoughts. It is estimated that around 2-3% of the population has OCD. Our guess is it may even be higher, as it is often overlooked or misdiagnosed. Additionally, many believe that their experience is worse than others’. They may even experience what we call “OCD envy” and express statements such as “I wish I had any other theme because it would be so much easier to deal with.” Even if they read about a very similar description of their OCD theme, they may still find a way to further the narrative that their OCD is unique. This can fuel feeling alone and misunderstood. The reality is that all the themes follow a similar pattern and are treated the same way in therapy. Remember, the goal of therapy is to treat the content as irrelevant! Additionally, while it can be triggering, group therapy can be a beneficial way to connect with others also experiencing OCD and practice “zooming out” from the specific content of the OCD. .
What if...I am doing therapy the wrong way?
Once the treatment plan has been established, many patients become consumed with the details of the therapy, as their brain can create rules and perfectionistic expectations about the therapy itself. Some fear that doing therapy incorrectly will lead to OCD becoming worse, irreparable damage, or unnecessarily slow improvement. For example, patients may get caught up in the minutiae and ask: “What is the ‘right’ amount of time I should do this exposure?”, “I know I was supposed to do my therapy homework 8-10 times but I only did it 7 times yesterday,” “How do I know if I am really accepting these unwanted thoughts?” “Will therapy still work?” “Am I going at the right pace?” These “right” and “wrong” thinking patterns often take one away from the “spirit of” the treatment and can even lead to the exposures becoming rituals. ERP for OCD is a structured treatment but successful therapy entails a degree of flexibility. There is not one right way to do therapy. The goal is to find various ways to demonstrate to the brain that these OCD thoughts, feelings and urges will be treated as irrelevant.
Additionally, it is common for patients to be convinced that they are doing therapy incorrectly because they are still experiencing intrusive thoughts or their anxiety feels worse during an exposure. ERP requires individuals to intentionally do things that likely will increase anxiety in the short-term, yet is the path to long-term success of mastery over anxiety. Experiencing anxiety during this process is to be expected. A helpful reminder is that the goal of the exposures isn’t to stop the uncomfortable thoughts or feelings but to change the relationship with them. Living with doubt is the key to success and that extends to the fear of doing therapy incorrectly!
What if...this is the piece of “evidence” that leads my therapist to think that this is not OCD after all?
At different points of treatment, patients often report experiencing intrusive thoughts that they will engage in a behavior or describe a situation that changes the therapist’s conceptualization of the case from OCD to “a real problem.” We often remind them: OCD is nicknamed the “doubting disease” for this very reason. The OCD brain wants certainty and while there can be some relief in getting an OCD diagnosis, it is common for the brain to question and analyze the validity of it. This can even turn into ritualizing during therapy by engaging in confessing behavior such as: “I must tell my therapist every single detail about what happened or about the thought/feeling I experienced because any one of them may make them realize that I don’t have OCD and...I may hurt myself, be attracted to a child, be gay, etc.” Patients may ask us to review the limits of confidentiality or ask for reassurance for whether we think what they just said is OCD/is still OCD. This is your cue to take a step back and ask: am I wanting to share this information because I think it is relevant to my treatment and important for my therapist to understand or is this me wanting to get reassurance that my therapist still thinks this is OCD? If this is reassurance seeking, take this opportunity to embrace not knowing.
What if...my therapist doesn’t know what they are talking about or has misdiagnosed me with OCD?
As the OCD part of the brain loves to question anything and everything, it is also fair game for it to start questioning the therapist’s qualifications, expertise, or assessment ability. Questions such as “Does my therapist really understand what I am experiencing?” or “Are they biased in thinking this is OCD because that is what they typically treat?” “If they themselves haven’t experienced OCD, do they really get it?” are very common. Individuals with OCD are often frustrated and terrified that the person they are trusting to guide them in facing their worst fears “does not really get it.”
Regardless of whether the therapist has personally experienced OCD, the variables that are most important in ensuring an understanding of OCD are appropriate training and treatment experience with OCD. At first, it truly is important to be an educated consumer in choosing both someone with expertise in OCD/ERP and someone with whom a connection has been established. We even encourage patients to “therapist shop” until they find a good fit.
A related fear is that it is not OCD but the therapist believes its OCD because that is his/her area of expertise/what they see often. Remember that OCD is referred to as the doubting disease and everyone who has OCD questions whether or not it really is OCD at one time or another. The possibility of it not being OCD feels threatening because that may mean that the content of their OCD theme is true (e.g., that they really are going to get sick from the doorknob, really are a violent sociopath or actually are in the wrong relationship). A wise therapist does not assume that someone giving themselves the self-diagnosis of OCD means that this is automatically OCD. When conducting a thorough initial intake, the process of differential diagnosis takes place and many non-OCD alternatives are considered and ruled out. It is central to the recovery process that individuals living with OCD, tolerate that the therapist cannot give 100% guarantee that what they are dealing with is OCD, but will choose to continue to treat it as OCD. Watch out for red flags when intrusive thoughts about the therapist come up. It is important to share these concerns with your therapist so it can be determined whether this is just the OCD brain being desperate for certainty (yet again) or whether this is an opportunity to explore new directions for treatment or other options for therapists.
What if...I have OCD AND the content of my intrusive thoughts is true?
Patients occasionally report that they do believe they have OCD but that a component of the OCD is “real.” This can be true. For example, someone can have intrusive thoughts about being in the “wrong relationship” and end up making the choice that their partner is not someone they want to commit to long term; someone can have intrusive thoughts about being gay and have attraction to others of the same sex. The content is irrelevant and the goal of therapy is to treat it as such. We frequently inform patients that the probability that the content of the intrusive thought is true is the same for them as it is for us. Similarly, the probability that they will act out on their fear is the same for them as it is for us. We also cannot say with 100% certainty that we will not run someone over with our cars, get angry and stab someone we love, won’t leave our partners, etc. Life is full of uncertainty but the OCD brain selects a topic or several topics that it “demands” certainty for. Continuing to engage with thoughts about whether the content of the OCD theme is also true serves as a “one foot in, one foot out” mindset and will only further OCD’s agenda. A major component of the treatment is to make the choice to consistently treat something like OCD even without 100% certainty that one will not do the thing that is feared/if the thing is true. Taking the risk that there may be a reality basis to part of the OCD requires courage and is the way to gain more freedom from the OCD.
What if...these thoughts are bad and I am a bad person for having them and letting them be there?
Intrusive thoughts are EXTREMELY common. Most, if not all people have experienced them at one time or another. Anxiety presents the illusion of weight and meaning to specific thoughts. Thought-action fusion is a concept that describes when individuals equate having thoughts with acting on those thoughts. A thought is a thought is a thought. Thoughts are random neural impulses that fly across our brains. They are not in our control and we do not choose which thoughts show up in our minds every day. Judging ourselves for having certain thoughts is similar to judging ourselves for the weather, i.e., “I am a bad person because it is snowing today.” It doesn’t make sense. Both are independent systems that are not in our control. We can like or dislike the weather; we can like or dislike certain thoughts but it would be unfair to assign responsibility to ourselves for either occurrence. This is why treatment entails making room for the thoughts and giving them permission to be there, regardless of how the OCD brain judges them. Experiencing unwanted thoughts, no matter how depraved or dark they may be, does not imply anything about the person having these thoughts. You are not your thoughts.
What if...the fact that this thought comes up so often means that it is actually important and not OCD?
Many people, including those with OCD falsely believe that the particular intrusive thoughts in the moment are important if they are frequent. The same unwanted thoughts come up so often because of the nature of OCD. The frequency of thoughts has nothing to do with their importance. Often, thoughts become repetitive because we judge them, push them away, or fight them. This in itself increases the likelihood of them appearing more often. Additionally, because they trigger the “fight or flight” response, some report that the situation/topic/intrusive thoughts feels like the most important concern in the world. While anxiety often alerts us to legitimate dangers such as oncoming traffic, the anxiety that is present in OCD is responding to false alarm signals, often repeatedly. These thoughts are not important, they just feel important. For this reason, many patients with OCD will report feeling guilty or negligent when they choose to treat their anxiety-provoking thoughts as irrelevant. However, that is exactly what is required in order to achieve mental freedom! The key is to give intrusive thoughts permission to come as they please and to not place relevance on the frequency of them or the feelings that come alongside them.
What if...because I don’t feel anxious, it wasn’t OCD after all?
Those living with OCD are used to intrusive thoughts arriving with a tidal wave of anxiety. While they may at times find the anxiety incredibly painful, it may also serve as a form of reassurance wherein they can tell themselves that “of course I wouldn’t do this because it terrifies me.” Often when people engage in ERP and they successfully demonstrate to their brain their commitment to treating these thoughts as irrelevant, the “false alarm signal” (which can manifest as anxiety) becomes more quiet. While this could be relieving at first, OCD can find a way to corrupt this development. This is a perfect opportunity for the brain to get more creative and create another “alarm signal” about there not being an alarm signal! It can then send the incorrect message that because the anxiety is not there or not there as intensely, then this means it was not OCD after all. This is another classic OCD trap that is sometimes referred to as the “backdoor spike.” For example, “What if now that I am seeing a photo of a child and not feeling anxious about whether I am attracted to this child means that I am actually a pedophile and this is not OCD after all?” The fear is that they “want” or “like'' these thoughts or want to do the deplorable behavior that previously provoked significant anxiety. Do not fall for this trap! Just as the thoughts are irrelevant, the emotional reaction to these thoughts are as well. Experiencing anxiety in relation to intrusive thoughts is neither good nor bad; rather, the goal is to make room for it if or when it comes up.
What if...doing exposures will make me lose control, act on the thoughts, or “go crazy”?
It is very common for people who have started the ERP treatment journey to experience intrusive thoughts about the treatment itself. Facing fears may lead the brain to overcompensate and start ringing “false alarm signals” about the therapy. Some examples of questions that may come up are about whether doing the exposure/not doing the rituals will lead to liking the thoughts, realizing that they are true after all or actually acting on the thoughts. For example, someone with Harm OCD may ask “If I hold the knife around my daughter, what if I lose control or get angry or actually hurt her? What if I realize I actually do want to harm her?” These are just tricky ways the brain is trying to create more questions about the therapy and creating no room for uncertainty. This is an opportunity to take the tools out and welcome more uncertainty!
While experiencing OCD can be very confusing, especially when one does not yet understand the disorder, it is not a sign of going “crazy” or of losing touch with reality. OCD is simply a false alarm signal associated with intrusive thoughts that evokes a surge of anxiety, fear, guilt, etc. which often leads to compulsive behavior to try to escape or avoid it. Similarly, you do not run the risk of “going crazy” by engaging in ERP. The treatment entails facing fears head on, thus often provoking a high state of anxiety for extended periods. This monumental task requires much courage and is part of the process of retraining the brain. Experiencing anxiety and more intrusive thoughts during exposures is very common and to be expected. Don’t fall for these traps!
What if...because X actually happened, it’s not actually OCD?
Sometimes, the brain can latch on to something that actually happened and try to use it as “evidence” of the OCD theme being true. This can even be a memory that someone has not thought about in years. Those who fall into this trap will distinguish their OCD subtype from other subtypes by noting that their obsessive content “really happened.” All of us have done things earlier in our lives that we later regret; however, those with this OCD theme will hold themselves to a higher standard. For example, “What if because I actually got into a fight with someone in junior high school, that means I am capable of violence and may actually act on the intrusive thoughts of stabbing my son? What if because I watched gay porn then I’m actually gay?” This can be a way that the brain can falsely assign legitimacy to the thoughts. Remember, the OCD part of the brain is on a desperate mission for answers and certainty and can use anything and everything as “evidence.” The events in question are not problematic; rather, the challenge lies in the compulsive replaying of past events and placing importance on them. Just because the brain is presenting something that actually happened as evidence, does not mean we need to treat it as such.
Above, are some examples of ways that OCD creates obstacles in treatment by presenting intrusive thoughts about the therapy itself. Remember, OCD is essentially a misfiring in the brain, a “false alarm signal” that says for (insert OCD theme here) not knowing is absolutely not okay. Because most of life is full of uncertainty, this pursuit is not only fruitless but actually feeds into the OCD and exacerbates the symptoms. It is important to remember that obsessive thoughts are not bizarre or unique. Hopefully, by shedding light on common therapy obsessions, those with OCD will feel less stigmatized and more willing to engage in the treatment process. We recommend that the treatment principles discussed in this article be attempted under the care of a qualified mental health professional specializing in treating OCD using ERP.