The Profound Challenge of OCD: One Woman's Story
Long before I’d ever heard the word archetype, I discovered a defining myth for my life in the story of the Athenian hero Theseus and his cunning plan to slay the Minotaur. This fearsome monster, half-man and half-bull, was caged in a structure of tangled, dead-end pathways called the Labyrinth. Young men and women were periodically forced inside as sacrifices to feed the beast, never to return. Until Theseus. With help from Princess Ariadne, who instructed him to unwind a ball of thread to trace his pathway in and guide his safe return, Theseus boldly entered the Labyrinth, killed the Minotaur, and lived to tell his triumphant tale.
My fascination with this myth may have originated with my yearning to find a way out of what seemed like inescapable family dysfunction—a father who constantly belittled my mother and treated me as a second-class child compared to my older brothers—but it wasn’t until my husband, Peter, became seriously ill in the mid-1980s that I really descended into a Labyrinth of my own.
Born with hemophilia, Peter had for years successfully managed his illness through regular infusions derived from human blood donations. But in the pre-AIDS era, none of these blood products were screened for “bugs” that could be silently passed along to unwitting recipients. Thus, we didn’t learn until it had already become a tragic fait accompli that through these contaminated blood products, Peter had become HIV-positive and contracted hepatitis C, to boot. I tested negative for both, but we both worried what the future would bring.
But even with this new challenge, I felt I had my life mostly under control, because I’d surmounted so many traumatic events in my childhood and youth, including the death of my mother from colon cancer at the age of 58, being held hostage for 39 hours at my workplace at the B’nai B’rith Building in Washington, DC, and two pregnancy losses before Peter and I adopted our son, Edward. In fact, I gained a reputation for staying cool under pressure, and to my friends, I became known as a trooper who always found a way when plans went awry to figure things out and go forward with a game smile. My husband even dubbed me Old Scrap Iron, a nickname for the durable Baltimore Orioles baseball catcher Clint Courtney, celebrated for his ability to stay in the lineup, inning after inning, game after game, despite injury or pain, without complaint.
In our relationship, Peter played the Stoic and I took on the role of Obsessively Pragmatic Problem Solver in Chief, always ready with Plans A, B, and C, just in case Peter’s health led to a last-minute scuttling of a family vacation, or normal family time suddenly meant hanging out together in an emergency room instead of our living room.
But, beneath the surface, in the labyrinth of my brain, an entire subculture of irrational worries, self-doubts, and bizarre fears was wildly proliferating, the content of which often had nothing to do with Peter. For instance, cleaning out my pantry one afternoon, I came across a jar of tartar sauce, unopened, which I knew I’d never use. I offered it to our cleaning-lady, who took it home. That evening, I was seized by the overwhelming fear that this jar somehow might be contaminated by botulism. It didn’t matter how improbable this fear was, I couldn’t stop it. I began calling every hour, then every half-hour, then 20 minutes, until I reached her and insisted she throw it out. I knew she thought I was crazy. I thought I was crazy. A few months later, a similar worry burbled up: I’d regifted an unopened set of Crabtree & Evelyn bath accessories as a present to my mother-in-law. Suddenly, I was overtaken by the possibility that dangerous bacteria may have somehow contaminated the soap and shampoo during the short time they were sitting, untouched, in a closet. Too embarrassed to call her myself, I enlisted Peter to call his mother to explain that she should throw the package away. I can’t recall us ever discussing this curious incident. Did Peter or my mother-in-law or I perceive anything odd about my concern with contamination, like the contaminated blood products that harmed Peter? As if I, too, had become contaminated—and was capable of contaminating others, in turn?
But to be sure, intrusive thoughts had begun to slither into my brain long before the discovery of the tainted blood products. I’m pained to count the ways and forms in which these themes and variations on self-doubt, self-blame, and shame plagued me. Soon after my mother died, for instance, I began suffering from occasional recurring thoughts and guilt about whether there was anything further I could’ve done to help her. This despite having visited her every day—and yet, wasn’t there the time she called to ask me to drive her somewhere, and I said no because I was on deadline to finish a graduate school paper? How could I have put that ahead of the deadline her illness had given her?
And a few years later, as I was becoming busier as a writer, an entirely different spectrum of irrational self-doubts started popping up, sudden fears that I couldn’t possibly have written a particular phrase in whatever article I was working on—it was too good, too clever, too elegant for me to have thought of it! I must’ve inadvertently parroted or echoed the words of someone else, I thought. To no avail I’d try to suppress these doubts as irrational—didn’t I have the countless drafts of what I’d written to prove how the passage in question had sprung from my very own brain? But such doubts were like macabre melodies stuck in my head, repeating themselves over and over in different keys, fading, and then suddenly reappearing loud and clear once more. So, not content with my countless drafts as evidence of my own authorship, off I’d trot to the library to double- and triple-check the phrase I worried I’d inexplicably made mine in error. It turned out every time that I had written what I claimed to have written. But that didn’t stop me from having to return at a later time to double-check something else.
Talking Back to Doubts
Rational enough to wonder what was driving these irrational self-doubts, I entertained several possible causes. Had I become a casebook example of the fear of success syndrome, as defined by psychologist Matina Horner, who’d been president of Radcliffe when I was there? I’d taken her psychology course and still have a copy of her 1970 essay, “Femininity and Successful Achievement: A Basic Inconsistency,” in which she described a stubborn “psychological barrier” suffered by many high-achieving women.
Or perhaps I was exhibiting symptoms of a related syndrome called the imposter phenomenon? It describes the experience of feeling like a fraud, an imposter, a poseur, despite having earned credentials proving the person (often female) is anything but. Yet because of the irrational belief that they’re fakes, they always live in doubt—and in fear that they’ll be found out, discovered. Recognizing myself in the symptoms, I immediately sought an article assignment to find out how I myself might combat them. That’s when I first learned about cognitive behavioral therapy (CBT) and the now-classic but then only recently published book that introduced this type of psychotherapy to public attention, Feeling Good by David Burns.
Reading it, I learned about self-talk and the ways in which the automatic thoughts we repeat to ourselves affect our moods and self-esteem. From this perspective, the self-doubts and bizarre worries that seemed to barrage me from out of nowhere were distorted thoughts that fed upon themselves, and upon me. Burns’s book in hand, I bravely began talking back to my doubts: Trust your own words, your own worth. Everyone makes mistakes; even you’re allowed.
I’d also started seeing a therapist who practiced a variant of CBT. And at first, the weekly visits with her, combined with the strategies in the book, did seem to reduce the frequency and severity of the thoughts. But the emphasis on rational thought still kept me, well,thinking. Rather than quieting my mind, these exercises kept it busy working overtime, combating the irrational with the rational, checking reality against absurdity. It strikes me now that I was battling against a deep-seated trope within my brain that was so entrenched that, dig as I might, my best efforts couldn’t loosen it from roots that seemed to become ever more embedded as time went on.
Alas, as the 1980s passed into the ’90s, and family and health issues became ever more stressful, the rational seemed to have less and less power to overcome the irrational. For example, at a gathering of adoptive parents, I was asked, as I usually am, what subjects I wrote about. I responded as I often do, that my wide-ranging interests are “eclectic, but not schizophrenic,” and in turn I received the usual laugh at my seeming wit. But suddenly, Oh my God, I thought, how witless of me! Would this couple think I was saying I really was crazy, therefore making me an unfit parent? Worse, the rational part of my brain had also kicked in to echo that maybe I really was crazy for even worrying about that. Immediately, I talked back to myself, saying, You can’t take responsibility for how people hear or mishear or misinterpret things. And who cares if they misinterpret? What’s the worst that can happen? But a beat or two later, I thought, But what if they did misunderstand? What if they say something to the people at the adoption agency who arranged this meeting, and what if they really do start casting doubt on my parental fitness? How could I have been so flip and foolish? At this point, I resolved my nonstop racing worries by engaging in further conversation to make sure that this couple had not misunderstood me.
“Hey,” I said lamely, “of course you knew I was kidding when I made that joke about schizophrenia.”
“Sure, don’t worry,” they responded.
Whew! I waited two beats, and the next thought that occurred was . . . but what if they were just being nice, seeming to understand yet really wondering, what in the world was wrong with me?
A good question, indeed.
Ironically, though writing could bring stressful self-doubt eruptions, working helped concentrate my mind on the immediate deadlines at hand. Keeping busy at the playground with my son also provided not just distraction, but joy. As long as I could reasonably stay in control (double-checking facts all the way), there seemed no reason to “share” these embarrassingly distressing blips with anyone. That is, with the exception of my husband, who increasingly just threw up his hands not knowing what to say or do to help.
I knew it was time to try to get help from yet another therapist, since my previous one had by then moved to another city. Although I’d benefited from grief counseling after my pregnancy losses, I decided that considering the current situation it would be best to get a referral through Peter’s hemophilia clinic. They recommended a licensed social worker specializing in psychodynamic psychotherapy. In mining my past, I could find explanations and hints that certainly fostered self-doubt. But it turned out these insights did little to quell my inner turmoil and tendency to double and triple check. In fact, talking back to this internal saboteur, as I dubbed it, only seemed to make it stronger. Plus, the underlying worry of Peter’s HIV status was growing. Unlike today, when improved medications and understanding have mostly erased the stigma of HIV, in the late ’80s and early ’90s, the very mention of the disease could conjure a visceral dread of anyone even suspected of carrying the virus. How could I not ruminate on the consequences if other mothers at the playground discovered Peter’s HIV status?
And my worries only increased when a close family member to whom I’d disclosed Peter’s illness because he was a physician suddenly rescinded the invitation he’d extended to us for a weekend visit to his house. “I know I’m being a jerk,” he admitted. “But what if something happened to my kids?” Shocked speechless, I hung up on him. What a fool I’d been for trusting him, I thought. But this anger soon became secondary to the overwhelming fear that I myself, and my entire family, were contagious, tainted. It reinforced the basis of our determination to remain secretive about Peter’s illness. But this hypervigilance also resulted in ever more frequent eruptions of doubt and worry that somehow the secret had leaked, and that the consequences would be even greater isolation beyond the self-inflicted isolation of secrecy we were already enduring. And those worries fed the ongoing fear that I’d somehow do harm to someone, whether by accidentally revealing Peter’s HIV status, or through the contagion of the disease, or simply by doing or writing or just saying something that would spin into an unspecified tragedy that could’ve been averted, if only . . . the list of possibilities itself had spun so out of control, I could no longer keep track.
Not surprisingly, these worries spilled onto our marriage. The more obsessive I became about making sure our son and I remained safe from the contagion of HIV, through repeated washings of dishes and cutlery and the dining room table, the more angry and defensive—and, to my mind, nonchalant in his vigilance to such matters—Peter became. And as a result, the farther apart we grew.
Well, at least I felt safer at some level—as if I was performing magic every time I took out a sponge and wiped down a counter with Lysol. And many of these ruminations, as exaggerated and nonstop as they were, also had some rooting in reality: HIV was a contagious disease, not yet fully understood, difficult to treat, and the object of great fear. Rationally, I knew that it was extremely difficult to “catch,” and to spread. But this wasn’t rational. Nor was most of society on this issue. And each type of irrationality continually and continuously amplified the other within me, leading me ever deeper into an increasingly complex maze from which I felt ever more desperate to escape.
All the while this was going on, I was seeing the new therapist and searching for a diagnosis that remained elusive. One day, haltingly, I asked her, “Could this be a form of PTSD? All this anxiety? This fear?”
After blinking a minute she responded, “I suppose so.”
“Well,” I continued, “what can you do for PTSD?”
“What you’re doing,” she answered, “seeing a psychotherapist.”
Well, it wasn’t working.
Here’s a typical example of my rational mind knowing how irrational these worries were, and yet still being unable to quiet them. I couldn’t really believe, could I, that when I visited Peter in the hospital one afternoon, that the IV bag hanging from the pole above his head had accidentally leaked onto my pastrami sandwich, contaminating it? I mean, would I have eaten it down to the last bite if Ireally believed that had happened? Well, I had eaten it, with no ill effects (yet), but even so, I spent hours going over the scenario, alternately persuading myself one way and then the other.
And another: for my upcoming 20th college reunion, everyone in the class was asked to submit a summary statement of life two decades out from college. My rational self complied, only to be plagued by my irrational self-questioning if I’d somehow accidentally included in my mailing a doctor’s bill or some other document that revealed Peter’s HIV status. The compulsion to double-check was so intense that I couldn’t stop from calling the Harvard alumni office to make sure I had sent the reply form and only the reply form.
A particularly tricky aspect of all this was that at a certain level I was being ultra-conscientious: about any possibility of contagion, about any possibility of news slipping out about Peter’s HIV status, about any possibility in my writing that I made an error (and when I did make an error, as everyone will, inevitably it was about something that had not occurred at all to me in any of my fastidious rechecking). But the trickiest part was finding a way to keep whatever balance I could maintain, between being vigilant and being, well, normal.
Into the Maze
It was at this point, in the spring of 1994, that I accepted an assignment to write an accessible collection of brief descriptions of common childhood ailments to be published in the form of a CD-Rom (remember those?). I was perhaps only a week into the project, however, when obsessive self-questioning began to sprout up with ever greater force and frequency.
Once again, my concerns grew out of a conscientious awareness of two very real concerns. First, I wasn’t a physician; shouldn’t there be a medical adviser to oversee and vet whatever I wrote? Second, wouldn’t there be legal ramifications if there was no medical adviser—or, at the very least, an upfront disclaimer that the information contained in the guide shouldn’t substitute for a medical opinion, or a visit to a physician?
“Good questions,” my editor said. “I’ll get back to you,” she promised. And did not. And did not, repeatedly, whenever I raised these questions, and raised them again.
And so the cycle began: in the absence of a medical adviser to vet what I was writing, I took it upon myself to double-check and recheck and then check again, every fact and sentence and word. My unstoppable worry was what if? What if someone reading this misunderstood? I would then be responsible if harm came to any child in that parent’s care. It would all be my fault. And how could I live with that responsibility, that shame, that guilt, of causing harm to a child, any child, perhaps many children, by choosing a wrong word, including erroneous advice, making any mistake at all? Because in an emergency, it really could be a matter of life and death.
On it went: the less my editor’s apparent concern, the greater mine. Where was the defining line between taking responsibility and being obsessive? With no answers to be found within my ever-spinning brain, and my editor not responding, I began calling my best buddy and fellow writer, Roberta, almost every day to ask her opinion—until she gently suggested I needed help.
She was right; I did need help. And I sought it—with yet another therapist, because the one who had no treatment for PTSD beyond seeing her had left New York, which gave way to yet another distorted thought about whether I was a jinx, a case so tough that all who saw me decided to get out of town as fast as they could?
Hoping for a better result, I began telling the new therapist about the intrusive thoughts that refused to go away, no matter how I talked back to them.
Me: I keep worrying that I may inadvertently cause harm to a child. I couldn’t live with myself if that happened. I wouldn’t want to live if that happened.
Psychotherapist: So how does that make you feel?
Me: Anxious. Terrible. I can’t get the thoughts to stop.
Psychotherapist: Let’s start over again. Let’s try to make sense of them. Why are you feeling guilty? Why would you think those things?
Me: I don’t know why. I just know I can’t stop thinking these thoughts. They won’t go away. I can’t sleep at night for thinking about it. I’ve lost my appetite for thinking about it. I’m losing weight. . . .
Psychotherapist (shaking her head): You’re just anxious. So anxious you’re making yourself physically ill. You’ve got to stop worrying so much.
But how? All my therapist seemed to be able to do was wonder aloud why I wasn’t making progress, why I was spinning wheels. In response to which I could only think, There must really be something wrong with me if despite these weekly sessions I kept getting worse, not better. In fact, I was increasingly entrapped by the thought that if I was causing harm through wrong information for the readers of this pediatric medicine guide, then I wasn’t worthy of taking care of my own child.
At that point, my psychotherapist went on vacation.
At our last session before her departure in mid-July, I pleaded, “But what if I have an emergency?” To which she replied, nonplussed, “I’ll be back in the country in mid-August and will resume office hours after Labor Day.” While my sessions with her hadn’t helped me get better, at least knowing there was one hour a week when I could spill out these terrible thoughts helped me get from one week to the next. Now, with no escape hatch, I went from a sense of dread to one of desperation.
Perhaps, I thought, if I simply acted happy, I’d be happy. So on our wedding anniversary, my husband and I celebrated by going to a theater matinee of Stephen Sondheim’s Passion. It was a beautiful, surprisingly cool early August afternoon and we decided to walk home, through Central Park. When we returned home, I sat down in my home office, and found myself shaking, trembling, crying, seemingly without reason.
“What’s wrong, Diane? I don’t understand! Snap out of it!” Peter said.“You don’t understand,” I replied. “As hard as I fight against it, I can’t snap out of it.”
To which he threw his hands in the air and walked out of the room, shaking his head, “That’s right. I don’t understand.”
And why would he be able to understand when I myself could not? And no one else could, either, even someone supposedly trained to understand? Could no one help me? A new thought took hold of me: maybe I should check myself into a hospital. Surely there must be some expert somewhere who knew what I was suffering from.
Laugh if you want (I do, though the laugh is certainly on me), but the thought of hospitalization brightened me considerably. See, I told myself, even when you’re at your most suicidal, you can always find a solution. Thus, I called my long-time physician, who, sensing my urgency, agreed to see me right away. He listened with empathy and compassion to my worried thoughts about inadvertently doing harm. He told me that as a physician, he himself took the responsibility to do no harm very seriously. He understood the burden of anxiety in needing to make the right diagnosis, prescribe the most effective medication. My own concerns were conscientious, he assured me, and although I was clearly overwrought, he added that I probably didn’t need to be hospitalized at the moment. Instead, he prescribed an antianxiety medication, Ativan, and the sleep medication Ambien. They helped me find some calm, even though my brain still raced the moment I awoke or the Avitan wore off.
But when I called the psychologist to whom he referred me and told her the nature of my obsessive thoughts, she replied, in a voice at once soothing and cloying, “Oh, you’ll be all right, you’re just taking this too seriously.”
No, I thought, don’t patronize me! You’re not taking it seriously enough!
Fortunately, I ran into a neighbor soon after who was a psychotherapist, and who recognized immediately upon seeing me that I was in distress. After listening to my story, she referred me to a psychiatrist and urged me to call. That’s how I met Dr. S., who listened to my whole story, and on my second visit, prescribed a starting dosage for Zoloft, an antidepressant known for helping quell ruminative thoughts. Her diagnosis was major depression, combined with anxiety and OCD ruminations. So there was not only a name for what was plaguing me—but also a treatment.
Slowly, the pressure on my brain began to lift. For the first time in months, I could fall asleep on my own, without the aid of Ambien or a glass of wine. My obsessive thoughts began to decrease in frequency and intensity—small outbursts would dissipate rather than turn into raging duels in my brain that would last for hours. The faint slant of light from the outside was growing brighter. A sense of perspective returned. Instead of being crouched over on the stage of my life, I could now stand back in different parts of the theater to consider the different acts and passages with a different focus and broader viewpoints.
Only then, after the SSRI had had enough time to calm my thoughts, was talk therapy able to help me begin to take control of the various emotional threads of my life that had helped propel me so deep into the labyrinth of OCD. Just as one needs to reset a broken bone before physical therapy, I needed Zoloft to reset my brain before talk therapy could help me find my way out of my OCD labyrinth.
With the worst ruminative symptoms at bay, I could begin to address the dynamics in my life that had exacerbated my symptoms. What I hoped—and needed—to gain from talk therapy was the additional insight, motivation, and strategies to help me revisit old emotional issues and find new ways to change the self-defeating, self-doubting, self-critical talk that had was now loosening under the dual impact of Zoloft and my sessions with Dr. S.
Over the next weeks, she helped me distinguish between being meticulous and being obsessive. So when the editors agreed to put in an introductory clause freeing me (and the publishing company) from legal liability, I was able to recognize that although I felt vindicated, I’d gone overboard in my obsessive worrying, to the point of being obnoxious.
Similarly, therapy helped me disentangle the real fears of HIV with the overdue need for Peter and me to talk, to touch each other, to overcome our mutual fears of contagion and instead to learn, anew, ways to be together to comfort and love each other.
As for my fractures within, I reflected that my repeated checking of facts and fears of errors or of repetitions or of clichÃ©s had begun as self-protective coping mechanisms against my critical father and my internalized self-critic. But these strategies to escape the maze of the family had ultimately only led to a different type of trap.
No, I couldn’t control or prevent future tragedies through the act of ruminating about them. But how could I control my ruminations? In time, I trained myself to refrain from asking others (whether Peter or a friend) for reassurance about something I said or wrote. Engaging in meaningful distractions—playing the piano, watching a movie, becoming engrossed in a good book—also helped. But perhaps the most helpful thing was learning to label my ruminative eruptions as, well, eruptions. Zoloft allowed me that clarity—and with it, the mental strength to manage the frightful medical crisis of Peter’s last illness, and the ongoing grief after his death.
Learning a Lesson
Over time, my weekly appointments with Dr. S. first became monthly sessions and then “well-baby visits” every few months to check on my mood as well as my medication level. Assessing the efficacy of Zoloft was also part of these sessions through the years. And during the months of my husband’s last illness, and after his death, I resumed weekly visits, essential for helping sort through the many layers of grief, loss, and practical logistics confronting me.
In retrospect, I continue to wonder why it had been so difficult to get the help I needed. And it occurs to me now that each time I had sought help, it was in the months following a major loss or trauma. And each time, after hearing my story, the psychotherapist would focus on that alone and say, “Well, who wouldn’t be upset in that situation?”
So what strikes me now is how very complex a condition like OCD is. On the one hand, it’s a physiological phenomenon, whose biological roots needed to be addressed, but also it’s a kind of malign extension of the very mental qualities on which I prided myself: conscientiousness, responsibility, reliability, maybe even a certain perfectionism, which isn’t always bad. It also drew on the most painful aspects of my own personal family history. Mix all these ingredients and you concoct a brew that’s at once tasty and toxic, familiar and deadly.
And managing its symptoms is a constant battle, a lesson I learned anew in 2007. After 12 years of downing a daily dose of Zoloft first thing each morning, I decided to try to take myself off the medication, cold turkey. Why? Because I was happy. That must also mean I not only had the OCD thoughts under control, but that I was cured, I mistakenly thought. I was in love and had become engaged to Phil, the man who was soon to become my second husband. In this happily reconfigured present, who needed meds?
But my noble experiment in going off my meds resulted quickly in the conclusion that it was best that I go back on. Those distorted thoughts started coming back, at first creeping slowly back inside my brain in little ways that I could handle as before, then coming back in a way that was so uncomfortable and awful, both mentally and physically, that I knew that my chemical imbalance needed a chemical to rebalance it. And, after calling my psychiatrist and consulting with her, I went back on. The major lesson: monitoring myself, remembering and being aware of symptoms the first time around, made me pay attention to the recurrence of symptoms and thus prevent a major blowout.
Since then, I haven’t tried this experiment again.
What I’ve learned most of all, through the years, is the need to act as my own Ariadne, my own ball of thread, to help lead me back through the maze. Having learned to recognize when I’m off track, I don’t doubt myself when I seek help: from my psychiatrist and my family and friends. I also know I can turn to the relaxation techniques that work for me: especially playing the piano, taking walks through Central Park, going to the gym, spending time with Phil.
I’ve accepted the probability that I’ll remain on Zoloft or related antidepressants for the rest of my life. And I’m grateful that instead of OCD possessing me, trapping me within its maze, I can mostly now control it. Make no mistake—I know I haven’t escaped it completely. But these days I think of the maze more as a neighboring structure that lives outside of me, rather than one that invades and inhabits me. Similarly, the Minotaur may not be entirely tame, but it no longer stalks me so insistently. I know all too well from experience that when the stresses of work or life grow too strong, the Minotaur won’t be shy about trying to lure me back in. The difference is I now know I have a ball of many threads to lead me back out into life again.