Living with OCD: A Diagnosis Isn’t the End
By: Patrick Kuklinski
Obsessive-Compulsive Disorder is well-known among most people - but few have a true grasp of how this disorder affects those who have it. Obsessive-Compulsive Disorder is a common disorder, impacting approximately 1 in 40 adults; however, this disorder is still massively misunderstood. Those with OCD are frequently stereotyped and characterized as neat freaks, germaphobes, or just as uptight; however, OCD does not cause a person to be any one of these things, and some people with OCD have no fear of germs, uncleanliness, or any other stereotyped ‘problems’.
What is OCD?
Obsessive-compulsive disorder is a chronic disorder, meaning that, while it is lifelong and cannot be ‘cured’, its negative impacts can be reduced with treatment. OCD is characterized by a person having uncontrollable, sometimes intrusive recurring thoughts (obsessions), sometimes accompanied by repetitive, seemingly unnecessary behaviors (compulsions). Obsessions and compulsions can vary in nature; often, they focus around a perceived ‘impurity’. While this frequently translates to physical uncleanliness, such as obsessive worries about germs or compulsive hand-washing, those with OCD may also focus on perceived impurities of a religious or moral nature. Intrusive thoughts that accompany OCD are disturbing and unwanted. Often, intrusive thoughts are unrealistic, and would never be acted on; however, being plagued by these dark thoughts can lead to further depression, anxiety, and guilt.
Photo by Annie Spratt on Unsplash
Signs of OCD in Childhood
As a child who grew up with undiagnosed OCD, I often felt ‘weird’ or out of place, but lacked an explanation as to why I was different from my peers. I struggled with repetitively touching objects to feel safe; when leaving a room, I might shut the door three times, or flick the lightswitch on and off until it felt ‘right’. I frequently worried about personal safety; I tried to combat my fears by repetitively checking locks, ensuring we had working smoke detectors, and repeatedly running ‘drills’ I had conceived for any potential danger. On the more severe end of the symptoms I developed, I struggled with compulsive skin-picking (dermatillomania) at a very young age. My compulsive urges to pick at perceived flaws in my skin led to open sores on my arms, then after years of repeating this behavior, speckled scars across my arms and portions of my face. As an adult, the world is kinder about these flaws; my picking has calmed down with treatment, so typically, the condition isn’t noticeable unless you’re looking for my healed scars. However, as a child, others were curious and sometimes unnerved by my ‘gross’ habit; this led to social isolation and a deep sense of shame for a behavior I felt completely unable to control.
Despite displaying these symptoms of OCD, among others, throughout my childhood, my official diagnosis came when I was 12. I had never previously received mental health support in a professional setting, and the catalyst for the change in how we addressed mental health was my grandmother, who shared her home with my mom, my brother and I, passing away shortly after a stroke. While receiving treatment for depression, my symptoms unexplained by grief were investigated, and I finally received some answers for a condition that had left me feeling inexplicably ‘weird’ my whole childhood without a solid cause as to why.
Photo by Kelly Sikkema on Unsplash
OCD is often characterized as a scary, unpredictable disorder. However, people with OCD are diverse; some people with OCD may present as neurotypical, and seem ‘regular’ during casual interactions, while some people living with OCD may have more visible compulsions that bring their seemingly unusual or jarring behaviors to attention. It’s important to remember that someone’s intrusive thoughts or compulsions do not characterize their morality or values, and that these thoughts largely do not reflect the ‘inner compass’ of people with OCD.
Is OCD Hereditary?
Unsurprisingly, many of my ‘OCD traits’ weren’t alarming to my mom and grandmother, because they shared many of these traits, such as disruptive intrusive thoughts (if I go down these stairs too slowly, someone will push me from behind) and self-soothing compulsions (if I check that the door is locked three times, I will be safe). This makes sense - while neither of them ever received an official diagnosis, OCD is, well, more common in families with OCD. Family aggregation studies have demonstrated that OCD is familial, and results from twin studies demonstrate that the familiality is due in part to genetic factors. Now, my cousin shares this diagnosis with me - and, while this diagnosis wasn’t as common or well understood in the past, stories about my late family members sometimes leave me wondering if we shared this in common, too.
Despite OCD’s characterization as a fixation on cleanliness, some parts of this disorder fall under what society considers ‘dirty’. OCD can often lead to material fixations and issues with hoarding - despite receiving regular mental health support from a therapist as well as full awareness of my disorder, this facet of my life is something I still struggle with. Some of my guilt and intrusive thoughts can make it difficult for me to separate myself from an object - even if it has no true purpose or value. For example, if I had a fun time going out to an event with my friends, and I returned home with a plastic drink cup, I might have a hard time disposing of it; even though it has no use., Tthrowing it out feels more like discarding the memories than the item. This can sometimes be problematic - while I like collecting cards, drawings, and other sentimental items from friends, it can grow out of proportion quickly. My home doesn’t resemble what you’d see on an episode of the TV show Hoarders, but I do have to monitor my own levels of messiness and ensure that I can keep my home in check. My home isn’t perfectly neat - I live in an average apartment, with a fair amount of clutter - but striving for perfection can also exacerbate my desire to keep things in order, meaning that often, I am happiest with a comfortable medium.
Living with OCD
While my journey with OCD has had its ups and downs, my ability to cope with this disorder has only grown over the years. Nobody’s treatment plan is the same, but I found success in reducing my symptoms after years of therapy and several different medications. I have confidence in my own morality even in the face of intrusive thoughts, which is difficult to master - while an intrusive thought along the lines of you want to hurt people would have me wracked with guilt as a child, I can now simply tell myself ‘No, I don’t’, and move on. Of course, this is after years of personal growth and therapy, but something that’s important to remember when dealing with OCD is that thoughts are just that - thoughts - and they don’t indicate one’s intent or morality. OCD can very much be debilitating, and people with OCD should be offered support and kindness; however, for those who are struggling with this disorder (or have a family member or friend who is), know that it’s still possible to live a happy and fulfilled life. OCD brings with it many hard days, but ultimately, it’s just one piece of you - people with this disorder are just as capable of meaningful work, positive relationships, and progressing forward as anybody else.
Patrick Kuklinski is a longtime writer living with OCD. He lives in New Hampshire with his partner, his dog, and his 4 rats. You can follow Patrick on Tumblr.
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