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Editor’s Note: Dan Jolivet’s very personal story about his experience with being a person with obsessive-compulsive disorder captured our collective attention immediately. This is a story everyone should read. Dan is honest and vulnerable, and you will gain perspective from Dan’s observations. [Note: The author’s representations here solely reflect his personal opinion and not those of his employer.]
I have OCD – Obsessive-Compulsive Disorder, that is. It isn’t a secret and I take it for granted most of the people around me know, but I had a conversation with a friend the other day that made me pause.
I commented about the medication I take to control my OCD and she expressed surprise, saying she thought I’d been joking when I mentioned it in the past. While it’s become commonplace to use the words “OCD” or “crazy” to describe certain types of people or behavior, I try not to make light of mental health or substance use conditions since that contributes to stigma. People dealing with behavioral health conditions usually struggle with shame and embarrassment in addition to the problems caused by their symptoms. Flippant comments can feel deeply humiliating. It can feel like my problems are a joke to other people and so I redouble my efforts to hide what I’m going through. Stigma is one of the main reasons people avoid treatment for mental health and substance use conditions.
That’s not to say I never joke about my own condition: I once saw a t-shirt I wish I’d bought: “Does Obsessive Compulsive have a hyphen?” Similarly, some of my friends have made wisecracks about cancer while undergoing treatment for it.
The Stigma Around OCD
It’s probably obvious that OCD is characterized by obsessions and compulsions. Obsessions are recurrent and persistent thoughts or impulses that are not merely worries about real-life problems. And compulsions are repetitive mental acts or behaviors driven by obsessions. Both the thoughts and the actions are irrational, making no sense to others – or even to the person dealing with them.
In my case, I think obsessively – ruminate – about virtually everything. I count things without noticing it and do math problems in my head almost involuntarily. I can tell you that one of the two staircases in the building where I work has one more step than the other. And I know that 97 is a prime number and that it can be expressed in hours and minutes as 1:37, which is also prime. When it comes to repetitive behaviors, I am constantly humming and tapping my fingers and toes.
My OCD also contributes to perfectionism and a tendency to overwork, both of which have served me well in my career. When I do a task, I typically keep at it until I’ve completed it as perfectly as I can. Without medication, though, my perfectionism can be crippling.
OCD is frequently seen as a “good” kind of neurodiversity, which is the variability in how human brains work and the way those differences impact individual behavior. Neurodiversity is the idea that people whose minds and actions differ from the average (or neurotypical) person are not “sick,” but are just outside the norm.
We design our environments for neurotypical people and everyone else may need accommodations to cope effectively with them. Further, neurodiverse individuals often have unique skills and abilities that allow them to contribute in important ways once they have appropriate support to address societal barriers (that would otherwise prevent them from participating fully in the workplace). Although applied most often to people on the Autism Spectrum, neurodiversity can also encompass people struggling with anxiety, Attention-Deficit Hyperactivity Disorder (ADHD), depression, Post-Traumatic Stress Disorder (PTSD), sleep disorders, and, of course, OCD, among other conditions.
The Impact is Incredibly Destructive
Most of my acquaintances and colleagues will never see the dark side of my OCD, but the people close to me pay a price for my condition. It contributes to my profound introversion, and I describe myself as “living in my mind.” One of my mentors in graduate school, a Jungian psychologist who prided himself on being able to size people up by their Myers-Briggs personality type, was astonished to hear I was an introvert. He told me, “I thought you were extraverted . . . You’re one of those people who is so introverted, even the fact you’re introverted is hidden.”
The result is that, although I have many friends I know and love, I often go for months or years without having any contact with them. My OCD fuels extreme procrastination as I focus on pointless activities that I feel compelled to complete. For example, it often takes me months or even years to respond to personal texts, emails, and voicemails, since I must wade through all the new ones before I go back to those I skipped in the past. I have several texts on my phone from 2017 that I still intend to respond to.
OCD and perfectionism, compounded by a difficult childhood, also lead to tremendous shame, bouts of depression, and an existential struggle to maintain a sense of meaning in my life, which deplete my already poor motivation. The fact that I also have severe, complex sleep disorders doesn’t help.
It’s no accident I’ve been divorced twice or that I have barely any contact with my daughters. The pull of my thoughts and preoccupations often distorts my priorities, and the people closest to me inevitably feel neglected and unloved. This breaks my heart because it feels like I always end up treating the people closest to me, that I love the most, the worst.
Treatment Helps, But There is No Cure
Although my OCD continues to cause difficulties in my life, treatment has helped. Medication (a low-dose SSRI anti-depressant) reduces the time I spend in meaningless activities. For instance, I no longer feel compelled to arrange the cans in my pantry so the labels are facing forward. And eighteen years of psychotherapy has taught me a variety of skills to break the cycle when I get trapped in a downward spiral of negative obsessive thoughts. I’m able to harness the positive aspects of my condition and mitigate some, but not all, of the negative ones.
I hate to share this – to publicly admit – that not only do I have OCD, but that it has had a profoundly negative impact on my life. I don’t want sympathy or condolences. I don’t want anyone to think it’s a tragedy or that I’m a victim – especially since I’ve been the recipient of virtually every kind of privilege possible in America. And I don’t want anyone to treat me differently in any way.
At the same time, I realize that disclosing my struggle is one way I can aid in the battle against mental health stigma. Maybe it will help others who are wrestling with their own demons to realize they’re not alone, or people whose lives haven’t been directly impacted by mental illness to better understand the toll behavioral health issues take.
So yeah, I have OCD.
To learn more, visit https://people.com/tv/howie-mandel-opens-up-about-his-painful-struggle-with-anxiety-and-ocd/ and https://stopthestigma.org/ocd/.
If you or someone you know needs help, call 1-800-273-8255 for the National Suicide Prevention Lifeline. You can also text HOME to 741-741 for support from the Crisis Text Line. The National Helpline for alcohol and drug abuse is at 1-800-662-4357. All three are free and available 24 hours a day, 7 days a week, every day of the year.
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