Breath in. Breath out. That breath wasn’t right- do it again but deeper. I paused too long on the exhale- something bad is going to happen. Breath in. Breath out. What if I never forget about my breathing again? What if my brain is broken and this is all I’ll ever think about now?
Breath in. Breath out.
Sensorimotor OCD is a subtype of obsessive-compulsive disorder that falls under the “pure obsession” (also called ‘Pure O’) category. This means that there are no easily identifiable or observable compulsions linked to the obsession, although if you look hard enough, they do exist. Reassurance checking with family members and trying to distract myself is my typical compulsions related to sensorimotor obsessions. “Sensorimotor” refers to automatic motor processes like breathing, blinking, swallowing, and heartbeat. These are bodily functions that are normally unconscious- we rarely think about them, and when we do it’s typically temporary (e.g. sore throat, elevated heart rate due to exercise). Breathing is my typical sensorimotor obsession, but that’s not how my OCD has always presented.
The brain of someone with sensorimotor OCD gets “stuck” on one or more of these processes and can’t let it go.
Early signs
I was diagnosed with OCD at age 10. Prior to the diagnosis, I began having deeply upsetting obsessive thoughts linked with seemingly unrelated compulsive behaviors. For example, I would be plagued with intrusive thoughts of my mom dying, and to relieve the thoughts I would stick spoons down my throat. If I didn’t do it “just right”, that meant my mom was going to die. I began arranging things on my bedside table so that nothing was pointed directly at my head, as this meant I would get a head injury; same with my desk at school. Brushing my teeth became a lengthy ritual- if I didn’t do it “just right” I had to start over. Then I began compulsively holding my breath and swallowing a certain number of times in a row. I became obsessed with how my throat felt when I wasn’t swallowing. OCD plagued my mind from the moment I woke up to the moment I went to sleep.
I used to lay in bed in the morning and sob, begging my mom to let me sleep so I didn’t have to face my symptoms.
I became convinced I would never lead a ‘normal’ life and started to have my first occurrence of suicidal thoughts. I couldn’t imagine growing up because I couldn’t imagine living long-term with those symptoms.
I consider myself an extremely fortunate person. Although I was born with a mental illness that can be debilitating at times, I was also born into a loving family with parents who are child psychologists. My parents immediately recognized the signs and symptoms of OCD and were able to find a pediatric psychiatrist and cognitive behavioral therapist who was practicing the beginnings of Exposure and Response Prevention (ERP) therapy. My improvement was immediate and rapid after starting the therapy and medication.
I have a vivid memory of going to the beach with my family a few months after starting therapy and walking along the shore with my dad. He looked at me and said, “you look so happy, I haven’t seen you like this in so long.” Those simple words meant so much to me because I was happy. I was happy after being convinced I would never be happy again.
The relapse that changed things
I had several ‘relapses’ of OCD symptoms over the years as I transitioned into adulthood. They usually only lasted for several weeks and were managed by increasing medication. I shifted my identity from someone living with OCD to someone who beat OCD and just had “normal” anxiety. This is part of what led me to be completely unprepared for the intense relapse I had in August 2022. My husband and I were sitting on the couch watching Stranger Things and eating takeout. As if a switch flipped in my brain, I suddenly became consciously aware of my breathing. This had happened several times over the past few decades and usually went away on its own, so I didn’t panic at first. After several days of intense obsessing, the panic began to set in. Sure I had thwarted these obsessive thoughts in the past, but what if this time was different? What if this was the time I lost my mind? I had been plagued with fear over the past few years that a relapse was coming, and now it seemed my fear was coming true. The suicidal thoughts began after about two weeks. I lost ten pounds because I could hardly keep any food down. The best way I can describe this time is that I was trapped in a dark box and couldn’t escape. I could see life happening around me but connecting with it was impossible. My husband and I traveled to New York for a wedding the following week and I was convinced it would be the last time I saw my parents or friends. My mom returned to Maryland with us so that someone could be with me at all times. I began secretly formulating a plan to end my life. In a moment of self-preservation, I shared these thoughts with my husband and he purchased a lockbox for all of our medication. On Tuesday, August 23, 2022, while my mom was in the shower, I picked up a knife and turned it over in my hands for several minutes. My plan was to cut my wrists and lay out on my deck so I could die outside. I remember thinking I should lay a towel down so my husband wouldn’t have to scrub blood off the deck. Thankfully I ended up not going through with it- it could have been a will to live or simply an aversion to pain. When my mom came downstairs I told her she needed to take me to the hospital immediately.
I was in an inpatient behavioral health unit for one week. Although it was incredibly difficult and dehumanizing at times, the medication stabilized me to the point of no longer being actively suicidal. I started to feel hopeful again even though I was still having obsessive thoughts. The other patients were incredibly supportive and validating; by sharing my experiences with them I started to realize that there could be a way to live openly with OCD.
I began ERP
I began ERP (exposure and response prevention) therapy the day after my discharge and rapidly improved. I started out doing ERP twice per week and am now down to once every other week in the span of three months. Making the decision to decrease ERP was scary but is also an important part of the “lifestyle” of OCD- I have to have the confidence that I have the tools I need to say no to OCD without reassurance from anyone else.
It has now been almost three months since I was discharged. In that time there have been difficult days and amazing days. My husband and I went on a date night to an incredible restaurant, I went to a Halloween party with friends, and we hosted Diwali at our house. In between those experiences I have spent hours doing exposures and practicing ACT. This includes things like guided breathing meditations, a script about what my life would look like if my obsessive thoughts never went away, or if I woke up every morning thinking about my breathing for the rest of my life. These exercises have been terrifying but have yielded incredible results. I wouldn’t have been able to type this even a month ago.
Reflecting
As I reflect on my experiences with OCD, it is not lost on me that in many ways I have the ‘perfect’ life to cope with this illness. I’ve worked incredibly hard to overcome OCD and not let it limit my life, but I have also had a supportive and loving family, excellent health insurance, and the financial resources to access ERP or other out-of-network therapies. I was diagnosed at an early age due to my parent’s knowledge of child psychology, and I have been in therapy and/or taking SSRIs for the majority of my life. Even with all of these amazing protective factors, I almost didn’t make it. This is why I don’t judge anyone who is struggling or feels that suicide is their only option.
I want everyone with OCD to know that they aren’t alone, they’re not the only ones, and it can get better. I hope my story can give hope to someone else who is in a dark place. I was convinced that my OCD was treatment-resistant and that I was the “special” case that ERP wouldn’t work for. I was wrong, and I’m so glad I took a chance to reclaim my life.
I now embrace my identity as someone who will always have OCD. The harder days don’t mean that things can’t improve, and having a mental illness doesn’t mean I can’t live a full and meaningful life.
