Why My OCD Went Undiagnosed for 25 Years

Danielle Kosecki

Credit: Science Photo Library/Getty Images

InIn early 2012, my mental health eroded. I was going through a break up, had a cancer scare, and was unexpectedly laid off from a job I loved. The resulting depression wasn’t a surprise (I’d been on an antidepressant off and on for most of my adult life), but the skin picking was. Suddenly I had an unavoidable urge to scratch and pinch the center of my neck where it meets my collarbone.

Even after the depression subsided, I kept at it. So much so that three years later, a colleague asked what had happened to my neck. Embarrassed, I made a joke about it being from stress and then quickly changed the subject. But the interaction cemented what I already suspected: This behavior was not normal.

Worse, the skin picking wasn’t my only “tic;” it was just the newest and most obvious. I also air-typed random words — moving my fingers as if using a keyboard — and had to scratch the exact center of my palms, sternum, and belly button until they felt just right multiple times a day, every day. As far back as middle school, I can remember needing to repeatedly check that my alarm clock was set correctly. I began to worry that I might have obsessive-compulsive disorder (OCD), a mental health condition characterized by uncontrollable, recurring thoughts (obsessions) and/or behaviors (compulsions) that an individual feels the urge to repeat over and over.

In 2015, I finally mustered the courage to broach the subject with a psychiatrist during an unrelated appointment. She asked if I was spending more than an hour a day performing these tics and whether they significantly impaired my day-to-day life. I told her no, and that I was stressed and burned out, sure, but who in New York City wasn’t? By most measures I was doing okay: I was healthy, holding down a high-profile job, and had recently gotten married.

My symptoms were too mild to be classified as OCD, she explained, but increasing the dosage of my antidepressant might help (it didn’t). And that was it. She never mentioned my symptoms again — during that appointment or any subsequent visits.

But still, I wondered: If I didn’t have OCD, then why did I get these urges so frequently. And why wasn’t I able to ignore them? So this year, four years after seeing that doctor, I started researching subthreshold OCD, i.e. OCD symptoms that aren’t severe enough to crack the diagnostic threshold.

And that’s when I discovered that symptoms like mine are not only valid, they may hold the key to preventing what some researchers refer to as “full-blown” OCD.

As far as Dan Collins, 57, knows, he’s always had obsessive-compulsive tendencies. His late parents used to tell him stories about how, as a kid, he would be up at 3 a.m., crying, trying to redo a project or retype a paper because something was “off.” At the time, Collins says he thought, “well that’s just because I’m a perfectionist or because I’m just very detail-oriented.” But according to Collins, his mild symptoms started to snowball when in 1991, at age 29, he dialed a 900 number, hung up before anyone answered, and then mentally spiraled out of control.

“In my mind I had done something that I thought was morally wrong,” says Collins, referring to when he called the paid entertainment line and hung up. “All this rumination began, like, What else might I do? I’m going to become addicted to these numbers. I’m going to be calling them all the time. I’m going to have to move to Australia and live in the outback where I won’t have access to a phone. It sounds silly. But at the time, it was hell on earth because the thoughts wouldn’t stop. It’s like a song in your head that you can’t get out. Imagine hearing ‘deck the halls with boughs of holly’ over and over and over and over and over and over again.”

In 1991, when Collins was diagnosed with OCD and depression, the diagnostic criteria for OCD were especially strict. Both the revised third edition of the American Psychiatric Association’s 1987 Diagnostic and Statistical Manual of Mental Disorders (DSM-III-R) — considered psychiatry’s “bible” — and the DSM-IV published in 1994 stated that in order for a person to be diagnosed with OCD, the obsessions and/or compulsions should cause “marked distress” and exist for “at least one hour per day” or “significantly interfere with the person’s normal routine, occupational (or academic) functioning, or usual social activities or relationships.” In comparison, most other psychiatric disorders only require that the disorder cause suffering, or disturb a person’s social or occupational functioning.

“OCD patients can present themselves in a relatively healthy way compared to other psychiatric disorders,” writes psychiatrist Dr. Carla Hagestein-de Bruijn, director of Parnassia Group Academy in the Netherlands, in a 2010 study. “The current diagnostic criteria do not diagnose these subthreshold subjects, which carries the risk of withholding adequate treatment or reimbursement of treatment-related expenses.”

Hagestein-de Bruijn’s paper was not the only one advocating for reform. The same year, leading OCD researchers made a number of recommendations in a paper commissioned by an American Psychiatric Association (APA) working group charged with reviewing the scientific advances that would inform the DSM-V.

In the paper, lead study author Dr. James F. Leckman, professor of child psychiatry, psychiatry, psychology, and pediatrics at Yale University in New Haven, Connecticut, echoed Hagestein-de Bruijn’s concerns and also pointed out that there is no data supporting the requirement that obsessions and compulsions occur for one hour a day.

But unfortunately, therein lies the rub. Research shows that up to 25% of the general population experience obsessions and compulsions as defined by the DSM-IV, but only 2% to 3% meet the full diagnostic criteria for the disorder. So where do you draw the line? At what point do these idiosyncrasies become a disorder?

Researchers are still trying to figure that out. “We are not aware of any evidence-based suggestions for how to improve this criterion for OCD,” wrote Leckman. Instead, he and his co-authors recommended that the APA consider tweaking the criterion’s wording to be a bit more inclusive — like making the hour-a-day benchmark an example rather than a requirement — which the APA did when they published the DSM-V in 2013 (you can see the changes side by side here).

Has the new language led to an increase in diagnoses? It’s too soon to tell.

“It finally got to the point where I couldn’t do anything, I couldn’t do my job. I didn’t know if it was like a brain tumor or something so I was just trying to get help from anywhere I could.”

Like Collins, Taylor Villanueva’s obsessive-compulsive symptoms started early — possibly at age three, although her first memories of it are later.

“When I was, I think, six I would always have to start walking with my left foot and end walking with my right foot,” says Villanueva, who’s now 25. “And in school, I was always the last person to finish a test because I would have to check all my answers, but like in a certain way. And if I didn’t I would get really stressed out.”

Around five or six years old, Villanueva’s father accidentally left the family’s stove on before leaving the house. Since then she’s had to confirm that every stove she sees is off, even if it’s not hers. At first, it just made her nervous if she didn’t check. But then she started having terrible thoughts like: if I don’t check, then my home will catch on fire and my dog will die.

“It finally got to the point where I couldn’t do anything, I couldn’t do my job,” says Villanueva. “I didn’t know if it was like a brain tumor or something so I was just trying to get help from anywhere I could.”

Around age 23, Villanueva saw a few different therapists before she found one with OCD expertise who was able to confirm that the mild obsessions and compulsions Villanueva had experienced since she was a child had indeed developed into full-blown OCD (she was also diagnosed with severe anxiety and depression).

Villanueva’s experience is fairly common. According to a 30-year study, children who report obsessions and compulsions at age 11 are significantly more likely to meet the diagnostic criteria for OCD in adulthood 20 years later.

But there are also risks for people like me, whose symptoms stay subthreshold. Research shows that we suffer similar consequences as those with full-blown OCD — more distress, a lower quality of life, and a higher risk for related disorders like anxiety and depression — just to a lesser extent.

The higher risk of psychiatric conditions rings true. I developed an eating disorder in college and have dealt with anxiety and depression for my entire adult life. Knowing what I know now about OCD, I can’t help but wonder whether I could have avoided those conditions if, back in middle school, I recognized and dealt with the thing inside my brain that was making me repeatedly check my alarm clock.

Turns out, that’s what OCD researchers want to know, too.

It took Villanueva roughly 20 years to get diagnosed, Collins 21 or so, and for me it will probably take about 25. Unfortunately, that’s not unusual.

Most adults with OCD have been suffering for more than 10 years before effective treatment is initiated — one of the longest durations of untreated illness of any serious mental disorder. Multiple studies show that the longer a person endures OCD before getting treated, the more likely they are to suffer in the ways mentioned above and the less likely they are to respond positively to treatments like cognitive behavioral therapy (CBT) or prescription medication.

“Early intervention is critical,” says Dr. Eric Hollander, director of the Autism and Obsessive Compulsive Spectrum Program at Albert Einstein College of Medicine in New York City. Hollander was part of the research group that recommended new diagnostic language for the DSM-V and was also one of 25 OCD experts who published a consensus statement in April 2019, calling for a greater emphasis on early intervention in OCD care.

“If [someone] has had symptoms for, on average, 14 years, the problem is that the symptoms are going to be a lot more ingrained and they are going to be less responsive to treatment,” he says.

There are a number of reasons why it takes so long for OCD to be diagnosed: shame, stigma, not knowing (or believing) your symptoms represent illness, racism, and poor access to psychiatric professionals with OCD expertise. But a big one is the disorder’s average age of onset.

Research shows that 76% of all OCD cases surface during pre-adolescence at the average age of 11, with subthreshold symptoms starting as early as age two. Kids this young may not recognize or be able to articulate what they’re experiencing, and how long a person goes untreated is one of the strongest predictors of whether their OCD will persist over time.

“I am a staunch supporter of proactive prevention of OCD,” says Tamar E. Chansky, PhD, a psychologist and the author of Freeing Your Child from Obsessive-Compulsive Disorder. Chansky works with a lot of families of young children who are showing early signs of OCD and says her best-case scenario involves parents contacting her when their kids are four or five and just starting to show signs of OCD — lining up their toys, refusing to wear a shirt that gets soiled, or insisting on saying goodnight a certain way, for example.

“In and of themselves, those could be ordinary things that kids do,” says Chanksy. “And there absolutely are things that kids grow out of. The distinguishing characteristic is distress versus a sense of mastery or pride in these patterns. If within a few weeks your child’s getting more intense about this, more upset about it, or has more things like this that are now on their to-do list, that’s a child growing into the OCD or the anxiety, not growing out of it.”

No long-term studies have examined whether effective early intervention reduces long-term disability from OCD or improves a child’s ability to meet developmental milestones (a study like this is unlikely because adequate treatment would have to be withheld from some of the subjects), but experts believe arguments in favor of early intervention are strong.

Villanueva, for one, thinks it could have helped her. “When I got to my worst,” she says, “I would always get mad at my parents and tell them that I wish they figured it out when I was younger and kept it from getting really bad.”

Currently, when someone seeks help for OCD, there’s no standard level of care. Depending on who they see, they might not even be properly evaluated for the disorder.

“In general, there’s not much screening done in primary care practices or by non-specialists,” says Hollander. “Even psychiatrists and psychologists may not systematically screen for OCD and it’s probably more the case in those individuals with subclinical symptoms.”

To help combat this, many experts, including Hollander, support developing a staging model, aka stepped care, for OCD. Proposed models vary, but in general, this treatment approach starts people with the most effective and least expensive and time-consuming treatment (like attending a one-time CBT workshop) and only moves them onto more intensive options (like starting therapy) if their symptoms fail to improve.

Staging models are already applied to other psychiatric conditions, like schizophrenia — but they have yet to be proven out for OCD. Initial research, though, is promising, with one study showing that stepped OCD care can significantly reduce treatment costs without sacrificing efficacy or patient satisfaction.

But there are risks as well. Using a stepped approach could delay the most optimal treatment for an individual. Conversely, because not all at-risk people will go on to develop OCD, using this approach could also create “false positives” that lead to unnecessary treatments and stress, especially among children.

If applied early, however, there may be a way around the latter: Therapists can teach parents how to handle their children’s behavior and how to reinforce different ways of thinking. “Often by catching it early, the kids may not even need to come into a therapist’s office,” says Chansky. “A recent study found that training parents how to respond differently to anxiety symptoms can be as effective as the child being treated directly. This shows promise for OCD as well, given how involved parents usually are in their child’s rituals”

But before stepped care is ready for primetime, researchers will have to determine how to classify people onto the different steps and which treatments are most effective at each level. “One of the problems in a lot of the treatment guidelines is that they are based on data that may or may not have been accumulated from randomized clinical trials where most of the patients in the real world — people with comorbid conditions and medical problems — are excluded,” says Hollander. As a result, clinicians don’t really know how most treatments affect the typical person with OCD.

Hollander is currently planning a five-center study that will begin to tease out those answers. “Our study will [help] us better understand, what’s the best treatment to start with? Who’s going to have an early response? If they don’t see full remission, which treatment would be the next best?” says Hollander. Right now, “clinicians don’t have adequate information to be able to make some of these decisions.”

Changes could be on the horizon for OCD.

In addition to the diagnostic tweaks made in the DSM-V, OCD was also — controversially — moved out of the Anxiety Disorders category and into its own diagnostic class — Obsessive-Compulsive and Related Disorders — to “help clinicians better identify and treat individuals suffering from these disorders,” among other things, according to the APA.

“I think that’s important because it highlights that OCD is a significant issue that occurs in a much bigger percentage of the population,” says Hollander. “One of the problems is that there has been relatively little to no funding from the National Institutes of Health and other federal agencies because it used to be thought that this was a rare disorder. I would hope that making this change, there will be more funding going into this area.”

The APA, to its credit, is ready to review that research if and when it’s available: At the end of 2016, the association announced that proposed changes to the DSM-V can now be submitted on the APA website, making the DSM-V a “living document.”

As far as my suspected OCD goes, I’m not going to wait for another diagnostic update. I’m currently being screened for admittance into a clinical trial that’s testing a new fast-acting drug and am searching for a therapist with the expertise to diagnose and treat me.

Learning about OCD has made me much more aware of how key aspects of the disorder — rigid thinking, perfectionism, an inflated sense of personal responsibility — have informed my past and continue to dictate how I function in the world today. Regardless of whether or not I get an official diagnosis, I’m happy this exploration inspired me to start piecing together the story of my personal mental health history. It’s empowering to know I’m prepared to advocate for myself in any future appointments.

If you’re experiencing obsessions and/or compulsions and are wondering whether they warrant treatment, don’t wait years to see a specialist. Let Hollander’s advice guide you: If it causes distress or interferes with functioning, ask for help. A good clinician will go over the risks and benefits of any treatment so you can make an informed decision together.