Props for therapy of patients with OCD include fake hands, tarot cards and a knife. (Photo by Sarah Ladd/Kentucky Lantern)

This story discusses suicide and self harm. If you or someone you know is contemplating suicide, please call or text the National Suicide Prevention Lifeline at 988.?

The signs that Alexa Quinter had obsessive compulsive disorder even as a child were there, but she wasn’t diagnosed until well into her 20s.?

After witnessing an attempted suicide as a kid, Quinter became obsessed with self-harm.?

“My 8-year-old brain couldn’t comprehend why someone would want to do that to themselves,” she said of the devastating experience.?

She developed obsessions surrounding health and religion as well. But it was the self-harm thoughts that let her know she had the condition.?

“The first time I noticed that something was wrong I remember I was sitting at … a dinner table with some extended family and there was … a steak knife on the table. And I was really scared that I was going to pick it up and … cut myself with it,” the Louisville woman, 34, told the Kentucky Lantern. “And I was more scared of the thought of doing it than actually … wanting to do it.”?

Quinter is now in recovery, but she said the COVID-19 pandemic made her condition worse and even caused her to relapse. In addition to self-harm OCD, she deals with health-related obsessions.

During the pandemic, she worried a lot about the virus. She didn’t want to leave her home and even suffered from agoraphobia, which the Mayo Clinic describes as “a type of anxiety disorder in which you fear and avoid places or situations that might cause you to panic and make you feel trapped, helpless or embarrassed.”?

“My health anxiety flared up again” during the pandemic, Quinter said, “to where I felt like I was dying all the time.”?

Experts say the pandemic had a somewhat surprising effect on the condition overall. Some patients who are obsessed with germs or contamination felt validated by the larger society. Others who hadn’t yet received an OCD diagnosis developed symptoms during the pandemic, though, as cases overall trended upward.?

Treating contamination-related OCDs during COVID-19 was especially complicated. Exposure to the feared thing – a deadly virus – wasn’t possible, some experts said. Patients needed to work through their fears internally instead.?

What is Obsessive Compulsive Disorder?

Obsessive Compulsive Disorder, or OCD, is “a pattern of obsessions and compulsions,” explained Dr. Street Russell, a licensed clinical psychologist who specializes in OCD treatment and the associate director of the Louisville OCD Clinic.?

“Obsessions are recurring, uncomfortable thoughts,” explained Russell. “So, an individual might be concerned or distressed about something. They fear something, even if it’s irrational, and they can’t get rid of it. They try all the typical things to neutralize it but won’t go away.”?

What follows are behaviors, thoughts and/or rituals that the person uses to get rid of the uncomfortable thoughts. Quinter, for example, felt that if she didn’t stand in a certain spot, breathe a certain way or touch something a certain number of times, her mom would die or some other tragic thing would happen.?

Those compulsions may work “for a little while, until the effects sort of wear off,” Russell explained. “And the brain is actually, then, reinforced to bring those thoughts up again, and bring them back even more intensely than it did before. And so they end up in this cycle of obsessing and performing compulsive behavior rituals to try to neutralize it, but the brain’s not taking it.”

OCD is under-diagnosed, misdiagnosed and often misunderstood, experts told the Kentucky Lantern. For example, OCD may appear as a general anxiety disorder, the treatment for which will not work on OCD sufferers. That can result in mistrust of therapy and frustration.??

There are plenty of misconceptions about the disorder, including the idea that it mainly takes the form of cleanliness or tidiness.?

Dr. Chelsea Mitchell, the associate director at the Kentucky Center for Anxiety and Related Disorders (KY CARDS), said that while some cases of OCD are symmetry-oriented, “it’s actually not as common compared to other themes that we’ve experienced in our clinic.”?

And it doesn’t help that popular and interpersonal culture have generalized OCD, experts say. Comments like “I’m so OCD” when referring to cleanliness or organization are harmful to people who actually live with the condition, they added.?

“It really doesn’t look a whole lot like what they put on TV,” Russell said. “Maybe it gets interesting to watch people who struggle with hand washing and they straighten up pillows a lot. And that’s maybe an easier character to portray in TV series and films. But it really only accounts to anywhere between 15% and 20% of people with OCD.”?

The remaining patients “feel like there’s stigmatization with the disorder, just simply because people don’t know about it, and they don’t understand what it is.”?

Dr. Jonathan Bauman, a licensed clinical psychologist at KY CARDS, said that these portrayals essentially minimize the condition. They are “very harmful for the people who are experiencing these things. And it brings a lot of, I think, shame and embarrassment about it as well,” he said.?

“This is a crippling disorder that … a lot of people suffer from,” added Quinter. “This is not your synonym for ‘organized.’”?

So, where does OCD even come from?

OCD is partially genetic, according to Russell, though it does not “cleanly” pass through families.?

“Folks are predisposed to having it, genetically,” he said. “But … the collection of life experiences and stress and other factors can then trigger that predisposition and they develop the disorder.”?

Additionally, he said, the strep virus has been known to trigger cases of OCD in a “rare subset” of patients. Johns Hopkins reports that “genetics, brain abnormalities, and the environment are thought to play a role” in OCD diagnoses.?

The International OCD Foundation website states, “Research shows that OCD does run in families, and that genes likely play a role in the development of the disorder” though they “appear to be only partly responsible for causing the disorder. … No one really knows what other factors might be involved, perhaps an illness or even ordinary life stresses that may induce the activity of genes associated with the symptoms of OCD.”?

What does treatment for OCD look like?

Treatment can include a combination of medication and exposure and response therapy, Russell said. He keeps an assortment of props in his office to use in exposure therapy — fake hands, religious texts, a knife, a spray bottle of water, tarot cards, and more. These are used to expose patients to something they fear or obsess over.?

For example, he may have a patient with contamination concerns shake a fake hand in therapy. “Even touching it with a fake hand brings up all the distress and so we’ll start there,” he said.?

If a patient is afraid of garbage, he may bring garbage into the office and have them practice touching it with the fake hands.??

The trick is to make sure that in being exposed to a feared thing or idea the patient does not end up reinforced to engage in compulsive behavior.?

After exposure, patients “have to then learn skills and be trained on how to confront the fear, but then to also resist those urges that they have to do the repetitive compulsion thereafter, which is really tough,” Russell said. “Most people with OCD have an intense fear of uncertainty.”?

He added: “Sometimes, the fear actually does come to fruition in some way. And so people will get sick or people will…accidentally hurt someone’s feelings. And so part of the therapy then is to also learn how to confront that and be with that distress, have that uncertainty there, but to perhaps move forward and orient your life through your value system instead.”?

This process can take longer if a patient’s obsession is with something taboo, such as intruding thoughts of being a pedophile even though they’re not.?

“OCD has nothing to do with what’s rational,” Russell added, “so we’re not trying to disprove something like we might with a phobia.”?

For Quinter, this kind of therapy took the form of her therapist pretending to be Satan when helping her work through her religion-based OCD.?

“One of my obsessions was that everybody is dead and we’re in hell and this is hell,” Quinter explained.?

So, in therapy she pretended that was true. She sat with the discomfort of expecting the temperature around her to rise. She also listened to chanting monks, which she said her therapist told her was a demonic choir.?

The therapist “basically raises your anxiety … through the roof and you’re in just full-on panic mode. And then he has you sit there with that anxiety,” she explained. “And it just becomes less and less over time because you realize that there’s no real threat. So, it’s not desensitizing in the sense of like, ‘oh, you’re just not ever going to be triggered by this or never fear this again,’ but it just helps you to be present with your fear and realize that there’s no threat.”?

Experts said how long treatment takes varies by case, though many hit recovery within a few months.?

What did COVID-19 do to OCD?

COVID-19 has had an impact on the OCD cases that Russell saw, but not in the way many may think.?

“Everyone expected that folks with OCD who have … contamination concerns and … worries about germs and spreading germs, that those would be the folks who would really struggle during the pandemic,” he said. “And anecdotally, for this clinic, I mean, we didn’t notice that.”?

On the contrary, he said, those folks felt validated by society over their concerns. Masking and hand washing to avoid germs or illness was normalized. However, more people in general came forward to seek treatment during that period.?

“To wash and to check things for germs was praised,” said Russell. “And so I think that most people with contamination OCD didn’t experience, really, much of a surge or worsening in symptoms. We did notice that there were a lot of newer cases of OCD.”?

Some people with harm and symmetry obsessions did see worsening of symptoms during the pandemic.?

“We definitely saw a significant spike in referrals once COVID hit, particularly with kids,” Mitchell, with KY CARDS, said.?

“The pandemic was such a high stressor for everyone, or for so many, that that’s what kind of tipped a lot of people over the edge to … go into the clinical range where they needed … a higher level of care,” Bauman with KY CARDS added.

“They weren’t able to just … get by with how they had … been functioning before that.”?

Does Kentucky have gaps when it comes to treating OCD?

Quinter said at no point in her treatment did she need care she couldn’t receive in-state. However, she acknowledged being “very privileged” to afford the care.?

Sessions cost anywhere from $100 to $300 per hour at the Louisville OCD Clinic, according to its website. The clinic says it doesn’t “participate in any health insurance or managed care company plans, including Medicare” but does offer an income-based sliding fee program.?

Mitchell said there also tends to be less insurance reimbursement for telehealth treatment, which provides more accessibility. Rather than drive hours to the physical clinic “telehealth allows us to be … virtually in their home.”?

“We can be in their home and help them walk through an exposure,” she added. “So I’ve seen a lot more progression there.”?

Additionally, Mitchell said, insurance companies sometimes want to cut patients off before they’ve had enough sessions to hit recovery.?

“OCD has the habit of jumping around and switching themes,” Bauman added. A patient may work through their harm OCD and then another type will emerge. Especially if a patient’s OCD is taboo in some way, treatment can take longer than insurance companies would like.?

Quinter said there also needs to be more general education and public awareness about OCD.

“I think that a lot of people probably suffer in silence because some of the intrusions that we have are very violent. They’re very graphic,” she said. “There’s a lot of shame surrounding OCD because of those things, especially if you have something as traumatic as like the pedophilia type of OCD.”?

In the future, she said, “I would just hope that there would be more education and that it would be talked about as much as anxiety or depression.”?