From sunup to sundown, starting in my 11th year, I found myself beset by constant, overwhelming fear. I’d been raised Catholic, and thoughts of sin, confession and guilt relentlessly plagued my mind. Years later, I would learn that I’d developed the religiously inflected version of obsessive-compulsive disorder (OCD) known as “scrupulosity,” but at the time, all I knew was the excruciating psychic pain. My mother found out one day when she saw me uneasily pacing my room. After exhausting both of us with her attempts to reason my concerns away, she finally told me firmly, “Stop it.”
As far as she was concerned, that put the matter to rest. If only it had been so easy.
I managed to suppress these urges during my 12th year, but they came back with a fury when I was 13, before gradually subsiding again during my later teenage years. During the acute phase, I was extremely embarrassed about it and didn’t want a soul to know. I felt like I was the only one in the world like this; I thought I was a “freak.” However, as I grew older, I discovered that mental illness and drug and alcohol addiction run in my family, as in so many others.
The most shocking event of my entire life happened when I was 20. One week after I returned to college, on September 3rd, I received a shattering phone call from my father, telling me that my brother had died from suicide. There’d been no outward indication that he’d any problems whatsoever that summer. He was 18 and had done well in college the previous year. That summer, he’d been playing a lot of baseball and had many friends. Over the years, I’ve come to understand that he must’ve been extremely depressed. I’ve read that depression actually changes the anatomy of the brain, as well as the chemicals that regulate moods. As we searched for answers as to why this happened, my family members and I wondered if something we’d done, or not done, had caused this to happen–and also what we could’ve done to help him.
I’ve since realized the truth: the fault lies not with any individual, but with society as a whole. The stigma surrounding invisible disabilities is pervasive, and people are understandably hesitant to share their suffering with anyone. This seems to be changing, but we still have a long way to go. Early on, I found relief in going to groups like Adult Children of Alcoholics, where participants share their life stories without and receive neither feedback nor criticism. Mutual self-help groups finally gave me the freedom to discuss the problems I was having openly, free from the threat of judgment. However, it’s one thing to share with strangers and quite another to share with family and friends. When I’ve tried to share my story, I’ve met with responses like, “You just need to toughen up,” or “We all have our cross to bear.” Because I’m a white woman, many assume that my racial privilege insulates me against all forms of suffering. Since I supposedly have it so easy, I have no right, evidently, to “complain.” The message, whether explicit or insinuated, boils down to “Just shut up.”
According to the International OCD Foundation,
OCD affects men, women, and children of all races, ethnicities, and backgrounds. It can start at any time from preschool to adulthood, but there are generally two age ranges when it tends to first appear: between the ages 8 and 12, and between the late years and early adulthood. The best estimates are that about 1 in 100 adults–or between 2 to 3 million adults in the United States–currently have OCD. There are at least 1 in 200–or 500,000–kids and teens that have OCD. This is about the same number of kids who have diabetes. That means four or five kids with OCD are likely to be enrolled in any average size elementary school. In a medium to large high school, there could be 20 students struggling with the challenges caused by OCD.
Some movies made in recent decades have helped chip away at the silence and stigma surrounding OCD, raising some measure of awareness around OCD’s existence and some of its symptoms. One such film, As Good As It Gets (1997), features Jack Nicholson as an author with OCD who writes romantic fiction and is rude to everyone he meets. And yet, even as they’ve helped increase the visibility of OCD, such films have resoundingly failed to convey the serious suffering and pain involved. They often trivialize the disorder or render it comically without ever acknowledging that those of us with OCD are fully aware of how irrational our thoughts and actions are, but still unable to change. It’s out of our control. Often, even with the benefit of treatment, OCD persists. Though there are ways to manage symptoms, there’s no cure. Those of us with OCD are frequently tormented by intrusive thoughts and feel compelled to engage in repetitive actions to counteract or neutralize these thoughts. Some people who check things over and over, confirming that the stove is off or that they locked the door. Others must arrange the objects in their homes in perfect order, count things repeatedly, or wash their hands until they bleed.
The effects of my early bout of perfectionism and OCD have lasted a lifetime, I believe. I’ve struggled with anxiety and depression, hoarding and procrastination. My relationships with men have been affected, as I’ve sought comfort, reassurance and relief from worrying and low self-esteem. Time and again, these relationships, and the limited succor they offered, proved temporary and only traumatized me further.
As an adult, I started seeking help and fighting back. I’ve tried many types of therapy and medications and found self-care practices that have greatly helped me, such as meditation, exercise, healthy eating, and finding supportive friends. I’ve developed a healthy spirituality over time. Although self-doubt waged a constant war against me in my own mind, I’ve finally come to recognize that nothing and no one is perfect. Lately, I’ve begun to study Gospel nonviolence and come to the realization that perfectionism is essentially an act of violence against oneself. I turned my angry on my inner bully and stopped paying attention to the negative thoughts it was sending me, recognizing them as passing thoughts that warranted neither my belief nor my attention. Slowly but surely, I’ve been learning to make peace with all parts of myself.
Despite the suffering it’s caused me, I’ve found reasons to celebrate my OCD, too. I believe it’s made me more sensitive to the suffering of others, especially children, and attuned me to the possible reasons behind others’ behaviors. I could never stand to see classmates bullied and would often speak up to defend them. As a result, I’ve become a compassionate and intuitive person, traits that have served me well in my chosen career. As a master’s-prepared pediatric nurse, I’ve worked for more than 45 years in public health, newborn ICUs, pediatric hospital units and mother-baby units. Though I’ve struggled with self-doubt and guilty feelings at work, too, I’ve found it deeply fulfilling to offer sensitive care to children and their families.
During the 1990s, an influx of migrants from Mexico and Central America brought days at the hospital when all the patients and their families spoke only Spanish. There were no interpreters available, despite the Americans with Disabilities Act having passed in 1990. I realized this was a dangerous situation, and since I’d studied Spanish in high school and college, I thought I might be able to help. I returned to college and took some classes in conversational Spanish and grammar, then became a certified medical interpreter and began interpreting at the hospital. By chance, I met a young medical doctor from Mexico who was here learning English. I successfully advocated for him hired to be hired as a night-shift translator. Helping in this way proved deeply gratifying, and I still attribute my capacity to do so, in part, to the compassion fostered by my OCD.
I believe, too, that OCD’s helped make me independent-minded, not easily moved by group opinions different than my own. In recent years, my passion for human rights and social justice has turned me toward working for the abolishment of nuclear weapons. As long as nuclear weapons capable of wiping out all life on Earth exist, I realized, we’re all on death row. Vladimir Putin’s invasion of Ukraine is once more raising the threat of all-out nuclear war. Kansas City, where I’ve lived for my entire adult life, is home to a plant that produces parts for nuclear weapons, called the National Security Campus. It makes or procures “85 percent of non-nuclear components that go into the [American] nuclear stockpile.” In 2008, I joined a local group called PeaceWorks and two national groups, the Alliance for Nuclear Accountability (ANA) and Physicians for Social Responsibility (PSR). Informed by ANA’s annual spring meetings to lobby in DC and its annual fall tours of nuclear weapons facilities across the country, I embarked upon a steep learning curve, educating myself about nuclear arms history, current data and the overwhelming environmental damage that nuclear weapons, whether detonated or not, have done. PeaceWorks began protesting at the KC Plant, and to date, we’ve incurred over 160 arrests for trespassing in civil disobedience actions.
Finally, art and music have offered additional positive outlets for perfectionism and OCD. Since childhood, I’ve loved painting and drawing, as well as playing the piano and saxophone. As an adult, I attended the Kansas City Art Institute and immensely enjoyed every minute of my photography and video major. I now sing in an African American choir, which I find deeply freeing and healing. I recently played a sax duet with a flautist in my church, and seeing the congregation’s excitement put me in a state of bliss.
I believe there’s power in my journey. I’ve learned to be persistent and to trust myself and depend on my own common sense, even when beset by irrational impulses. I had to be patient and carefully practice self-acceptance and self-love, and in so doing, I’ve learned to show that same kindness to others. I now understand that while it’s necessary to question things in life, there’s not always a completely satisfying answer. In learning to live with uncertainty, I’ve become a stronger person. Perhaps most importantly, I’ve come to appreciate my strengths and to value the many friends who’ve loved and encouraged me over the years.