Purell, GermX and all those hand sanitizers that became vogue in the early 2000s were the last temptation of Sue Lyons.
For her, they were poison.
At the time, friends and family knew Lyons as a “neatnik” and a “clean freak.” But only a scarce few realized she battled a mental illness, a contamination obsessive compulsive disorder.
Her irrational fear of contamination — mostly of making others sick — had long ago forced her to quit a job as a registered nurse. Lyon’s OCD was the reason she’d clean the steering wheel in her car; wrap her used tissue inside a clean one before throwing it away; panic when she had to cook with eggs, pork or poultry, to the point she couldn’t even be in the kitchen to watch her then-teenage daughter prepare a meal with a new pasta-maker.
Lyons is better now, some 20 years later.
But not cured.
Her OCD behaviors were largely in remission. But life in a COVID-19 world the past eight months has been a challenge. She’s caught herself slipping back into a few of her old thoughts.
“There’s so much uncertainty over the virus, that it can be fertile ground for people with OCD,” said the Jackson Township woman, who’s run an OCD and scrupulosity (moral and religious obsessions) support group at Queen of Heaven Catholic Church in Green for two decades.
For years, Lyons had resisted the urge to buy hand sanitizers, because she was afraid it would become a compulsion. Now, she has them all over the house. Twice, she’s turned down communion at church for fear it was contaminated. While visiting her mom at the hospital, she used a cane to call an elevator. There was a tension-filled moment over a community pen in the doctor’s office.
Mostly, her precautions are appropriate for the times.
“But that little voice is always there,” she said.
Obsessive compulsive disorders are neurobiological, same as schizophrenia or even autism. The exact cause is unknown, though research has suggested there may be a genetic link.
Although contamination OCD is a common form, in multiple variations, other categories include scrupulosity, symmetry, health-related obsessions, religious obsessions and sexual thoughts.
Lyons actually overcame a scrupulosity disorder, as well as her contamination disorder. In a way, that gives her an advantage. She has insight into OCD and she understands the mechanics of exposure and response therapy, the gold standard in treatment, experts say.
Lyons has largely recognized her pandemic-era obsessive thoughts, which create anxiety — before she turned to compulsive behaviors for relief. Those more recently diagnosed, currently in therapy, or those who don’t realize they have contamination OCD may find it difficult to adapt these days.
“This is an interesting time,” said Jonah Lakin, a psychologist at the OCD Anxiety Center of Cleveland in Fairview Park. “Many behaviors they were told were excessive are now completely normal.”
Like fear of germs and excessive hand-washing.
“Some people with OCD are feeling vindicated,” Lakin said.
Even if contamination OCD can be debilitating. Compulsions and anxiety that come with it can interfere with daily life. It’s why Lyons, the support group leader, quit her job as a hospital nurse shortly after beginning a career 40 years ago, though she’s kept an active license to this day.
“If you really have OCD, it will be a source of torture,” Lakin explained.
Gabrielle Faggella, a clinical social worker in Fairlawn, agreed.
Faggella is president-elect of OCD Midwest, an affiliate of the International OCD Foundation, and she’s treated OCD clients for 20 years at her Palladium Counseling practice.
“In OCD, there’s a true sense of panic and desperation,” she said.
It’s a cycle that makes sufferers develop compulsions, such as washing their hands every five minutes to alleviate anxiety and provide a source of relief and comfort, even if short-lived.
People with obsessive compulsive personality traits don’t necessarily have OCD. The difference is that someone with OCD doesn’t like what’s happening and they want the thoughts and fear that create compulsions to stop, but they can’t figure out how to make it end.
Lakin and Faggella both said the most effective treatment for OCD is exposure and response therapy, ERP for short.
The premise is to expose people to the types of situations that stimulate their obsessions — but then help them prevent compulsive responses, in effect breaking the cycle.
The idea is not to hide from unpleasant thoughts, but to understand the accompanying intense anxiety is unwarranted.
An extreme example, Faggella said, would be an OCD patient who believes he must count backward from 1,000 every time he sees a plane in the sky, or else it will crash.
“Before (coronavirus), I’ve had patients who were explicitly not supposed to wash their hands when they came home from an outing,” Lakin said.
It was part of their treatment.
But that kind of treatment has been modified
“We were rubbing carpets, touching doorknobs and then touching our faces … licking fingers,” Lakin said. “Touching toilet seats. … We’re not doing any of that now in a public setting.”
However, he said he continues some of those techniques for clients treated remotely in their own homes.
“One of the overarching goals is to teach the client to better tolerate the stress,” said Faggella. “We’ve always lived in a world of uncertainty … so if the science changes and says we should wear masks in public, stay 6 feet apart and wash our hands, then that’s what we do.
The key is getting clients to stop there.
“The situation has changed,” Lakin said.
Health experts agree a 20-second hand-washing is sufficient.
“But someone with OCD may take those guidelines to an extreme,” Lakin said. “‘Why not 40 seconds, or even a minute is probably better,’ they might say. It’s just sort of that slippery slope.”
Faggella said some of her clients have actually taken comfort in coronavirus guidelines laid out by local and state health departments and federal agencies, such as the CDC.
“These are people, who even as little kids, they were loved by adults; they listened and were rule-followers,” she said.
OCD affects about 1 in 40 adults and 1 in 100 children in the U.S. And the World Health Organization has consistently ranked the disorder among the 10 most common causes of disability worldwide,
Lyons’ support group is the longest running of its kind in Ohio.
It meets on the second and fourth Tuesdays of most months, from 7 to 8:30 p.m. Prior to the pandemic, it was in-person at Queen of Heaven, but it’s now convened virtually via the internet.
“She is a godsend,” Faggella said.
The group’s goals are to provide information on OCD treatment; eliminating the stigma of mental illness; suicide prevention; providing a safe forum to talk freely; discussing the side effects of medications; and helping some understand their rights in the Americans with Disabilities Act.
Lakin said it typically takes years for someone with OCD to seek and find the proper therapy and treatment, which can sometimes include medications to help reduce the anxiety.
“People do not fully appreciate the intensity of the treatment. … It takes tremendous bravery,” he said.
Faggella said OCD is treatable, if not curable.
“In this 2020, I tell clients of all the mental illnesses … there is hope with OCD,” she said “We know how to treat it. It can be tormenting, but certainly there is light at the end of the tunnel.”
To find help or information, visit iocdf.org
For information on the local support group, contact Lyons at 330-499-0373 or email to: Ocscrupsupport@aol.com
Reach Tim at 330-580-8333 or
On Twitter: @tbotosREP