It was an interesting conversation to compare experiences with a fellow peer support specialist who worked in a different agency than my own, until it took a crippling turn. In answering the question of why I got into peer work with my lived experience with Obsessive-Compulsive disorder, the response I received was a chuckle and, ‘well, we deal with people who have way more serious problems than just OCD’.
My frontal lobe began to throb as the OCD monster living in the back of my brain took the opportunity to pounce. The rumination on whether my illness was as severe as I experienced it, if I was just weak and stupid, and the idea that maybe I just wasn’t as sick as other people completely took over. I stood staring at this gentleman unable to even respond. He sensed the awkwardness and change in the environment and quickly excused himself. I sat down, gripped the arms of the chair, and began talking myself out of believing my experience with OCD was as silly as everyone must think it is.
This isn’t the first time I have encountered this belief about Obsessive-Compulsive Disorder. This also isn’t the first time I feel upset about why the societal portrayal about OCD isn’t taken seriously. Nine out of ten times I tell someone I live with OCD, they will comment that they have OCD too or they have a ‘little bit’ of it, and it is typically accompanied by a chuckle or excitement about their little coveted rituals. My commitment is to use those opportunities to educate, but that does not always turn down the heat that simmers inside of me about the implications of allowing a majority of the population to trivialize an illness that drives individuals including myself to attempt or die by suicide.
Although I feel baffled that people won’t just get it, there are several reasons we are up against when convincing those that OCD is not just a trendy illness we should be able to overlook:
- The Media Portrayal
This is an ongoing battle for mental health advocacy; staying in front of those that use mental illness in humor and drama to enhance their characters. We are forced to play catch up when it comes to characters like ‘Monk’ in educating about the severity around mental illness. No, OCD is not advantageous in becoming successful in their career. No, people don’t enjoy their obsessions and compulsions as typically portrayed by the media. No, just because you like Christmas does not mean you have ‘Obsessive Christmas Disorder’. When we have to come in after the fact and educate people on the realities of OCD, we typically are viewed as ‘too PC’ or ‘weak-minded’ to not be able to just let go and have a laugh about it. It is a maddening cycle.
- Not Enough Individuals are Willing to Share Their Story
Shame, guilt, and embarrassment are three undesirable side-effects of having OCD. We have insight our obsessions aren’t aligned with our morals and values, yet we cannot stop them or the compulsive behaviors. This makes us feel weak and stupid. Because of this, many of us retreat into a shell of shame hoping no one discovers the dirty details of what we were forced to face with OCD. It is this shame that keeps us silent about our struggle. We stay silent believing people may judge us, reject us, or believe the obsessions are true and real. While the silence is understandable, it is damaging in our fight to educate the realities of OCD. We need more people to come forward and share the details, struggle, and repercussions of delaying treatment.
- Lack of understanding about the term ‘Disorder’
Hey, I’m not denying that most people don’t experience obsessions and compulsions, but I have a real problem with people defining those experiences as a disorder when it really isn’t. Why? Because trying to normalize our suffering against those that believe they have ‘a little bit of OCD’ can make a devastating impact. The miserable secondary fear that can accompany OCD in many of us is that we really don’t have OCD and we really just are crazy, weak, or stupid. When someone claims that they have OCD and they really don’t, sufferers may internalize this as ‘everyone has a little bit of OCD, it’s you that just can’t handle it’. OCD is a chronic disorder that cannot be controlled by outthinking or developing a ‘strong and resilient mind’. My go-to argument with people who claim to have a little bit of OCD is always, ‘Do you enjoy your obsessions and/or compulsions? If you do, then you do not have a disorder’. This is a definitive difference between those that have the actual disorder and those that just want to use the terminology as a label for their behaviors.
So what can we do?
The best way to change OCD’s quirky reputation is to start speaking out with education and lived experience. My advocacy philosophy has always been ‘people don’t know what they don’t know!’ I have survived mental illness and the stigma accompanying it so I look at it as my duty to give back to those that don’t have their voice yet.
It can feel daunting standing up to people who are disrespecting the disorder, but there are many ways to approach it that are non-defensive and strength-based. If you don’t feel comfortable sharing your lived experience, use someone else’s or use your own as a general example.
Write places/people using OCD as a quirky or offensive way to advertise. We don’t have to be scathing and angry, but we can make an incredible impact by using our experiences to highlight the offensiveness that goes along with trivializing our suffering. You’d be surprised how many people will listen and respect your experience.
And finally, don’t ever let others bully us about our authentic experience with OCD. People will say we just need to ‘get over it’, or ‘develop a stronger mind’, or we are being ‘too sensitive’. It is easy for others to say these things when they haven’t walked in the shoes of the misery of OCD. Sometimes we have to agree to disagree with people who aren’t willing to hear our arguments, but planting seeds can be just as effective. One day that individual proclaiming people with mental illness are just ‘weak’ may find themselves in a position of needing help for themselves or their loved ones. They may just be thankful we took the time to educate them even if it is years later.
Every once in a while I will become paralyzed by fear just as I had with the gentleman who insinuated OCD isn’t as bad as other illnesses. When it happens, I need the time to process why it affected me so deeply. He had bumped up against the underlying fear that perhaps my OCD experience wasn’t as bad as it was and I was just weak. I needed to put that fear in place and remember that my feelings can only be discredited if I allow them to be. So, I demanded the monster to let go of my frontal lobe, found the gentleman, and explained to him why his statement devalued my actual experience.
He was grateful I had taken the time to address him directly. I was grateful for the opportunity to educate.
Thank you for taking the time to read,
Mental Health Advocate/Public Speaker; Peer Support Specialist; CBT/ERP/Stigma Coach: Effective OCD Treatment; Podcast Host ‘Two Flew Over the Cuckoo’s Nest’; Crisis Intervention Team Presenter: Denver Police & Sheriff Department