For years, Purell was Amy Iannuzzi-Tingley’s “best friend.”
When she was at her worst, the West Mifflin native said, she was taking three “scalding hot” showers a day and washing her hands 50 times. And it was all driven by her obsession with germs.
Amy has obsessive-compulsive disorder. OCD is a mental illness characterized by anxiety and recurring thoughts, or obsessions, that trigger repeated behaviors, called compulsions. For much of her life, Amy’s germ-focused OCD forced her to wash her hands excessively and constantly worry about being contaminated by things around her.
Today, after years of therapy and taking medication, Amy, now 30, keeps a schedule no different than the average speech pathologist. She washes her hands only before cooking and after using the bathroom; she showers just once a day.
And perhaps most symbolic of her recovery, she no longer carries hand sanitizer in her purse.
OCD is one of the most common psychiatric illnesses, according to Robert Hudak, Amy’s doctor and the medical director of the OCD clinic at UPMC. Roughly 1 percent of American adults, or about 2 million people, have the disorder, according to the National Institute of Mental Health.
Amy’s journey hasn’t been an easy one, but it has inspired her to become an advocate for awareness about the disorder and the options for treating it.
Although she still takes medication, Amy is not in psychotherapy now, and hasn’t been for a few years. But her years of treatment have left her with the tools she needs to keep healthy, she said.
Every day, she makes sure she isn’t washing too much or avoiding things she thinks might be dirty. It’s a far cry from the days before her diagnosis and treatment.
Back then, she said, “I just did everything my OCD wanted me to do. I just washed and cleaned and avoided what I didn’t want to touch, and it took over my life.”
Amy’s OCD was not diagnosed by a medical professional until she was 18, but she knew long before then that she had the disorder. When she was about 11, she said, her behaviors were characteristic of OCD. She had started washing and showering more frequently, and it was a scary point in her life.
“I didn’t know what was going on at first,” she said. It wasn’t until she saw an episode of the Oprah Winfrey Show that she realized what she was suffering from.
The program featured people with OCD talking about their experiences. When she saw it, Amy said, she “immediately knew, ‘Oh, my God, this is what I have.’”
But Amy did not share her self-diagnosis with family or friends or seek medical help. She kept her OCD a secret through the rest of middle school and high school, hiding compulsive behaviors and making excuses for them when others noticed.
If someone saw her washing her hands at school, she would say she had gotten gum stuck on them from under a desk; if her mother noticed her changing her clothes, she would say she had gotten them dirty or sweaty.
She made it through high school this way. She earned good grades and participated in extracurricular activities, all without medical help.
“I thought I could handle it on my own, and I thought I wasn’t bad enough,” Amy said. “I told myself I didn’t need help — that I was fine.”
College was a different story. Amy knew it was time for a change when she moved into her freshman dorm room at the University of Dayton at 18. Her OCD overwhelmed her, and she withdrew after just five weeks.
“I would go to a class, and I couldn’t touch a test they gave me because I thought it would be contaminated,” Amy said. “That was the final straw.”
The road to treatment
Now, almost 12 years later, Amy considers herself recovered. She still has OCD — there is no cure for the disorder — but she has gone through treatment consisting of medication and cognitive behavioral therapy, known as exposure and response prevention, that she says has made all the difference.
After she withdrew from college in the fall of 2002, she was diagnosed with OCD, started taking medication and entered an intensive outpatient therapy program at UPMC.
For two months, Amy went to UPMC three days a week. She worked with therapists to expose herself to her fears — objects she thought were contaminated with germs. During her first therapy session, she held the key to the common floor bathroom in her hand, something she normally would have shunned.
The therapy was hard and “very uncomfortable,” she said, but through these exposures, she started to feel better.
“I slowly learned that being contaminated is not going to hurt me,” Amy said. “It was not as bad as I was making it out to be. Slowly, and of course over many sessions and more and more therapy, I started to feel empowered.”
The therapy, she thought, was really working.
Her therapist even had her throw her hand sanitizer away.
After just a few months, Amy returned to college, this time closer to home. She opted for a single dorm room instead of sharing with a roommate, but she still showered in a hall bathroom. “It was as dorm as dorm could be,” she said.
By the next fall, she was living in an apartment with friends.
Making such a quick turnaround felt “huge,” Amy said. “It was very empowering to see where I had come in a year, from leaving college to getting better with my OCD and catching back up in school. I just felt normal.”
In the years since, Amy returned to intensive therapy twice and met with a therapist less frequently, once every week or two, for several years. She also has taken regular medication, she currently uses three prescription drugs: Seroquel, Paxil and Cymbalta.
While she has moved away from Pittsburgh, she still sees her doctor at UPMC. Amy said she wasn’t satisfied with the care she received outside of the city. Dr. Hudak said many health professionals aren’t taught to diagnose or treat OCD properly.
“It’s very common for medical professionals to misdiagnose you,” Dr. Hudak said. “There are a lot of places in the United States — most places in the United States — where expert care isn’t there.”
Amy’s mother, Deborah Iannuzzi, said she decided to get involved with the Obsessive Compulsive Foundation of Western Pennsylvania, a non-profit education and support organization, because she felt that there weren’t enough therapists qualified to treat OCD in the area. She’s now the chapter’s secretary and previously served as its president.
Today, Amy serves as an advocate for awareness of available treatment options for OCD, and reaches out to others with the disorder. She started a support group in the Pittsburgh area for people with OCD and ran it for a year.
She has also given talks about going to college and having relationships while living with OCD (she has been married to her husband, Andrew, for eight years).
“For a long time there, I would not tell anybody that I had this problem. Now I’m not afraid to tell people,” Amy said. “I want to show [other people with OCD] that there is this therapy and there is hope that you will be normal again.”
Amy also wants to put a face to the disorder, which carries a stigma. She is reminded of it when she hears people throw the term around, saying, “Oh, that’s just my OCD” if they don’t like to touch something.
“I want people to know that this is a real problem, and we can’t just laugh at it,” Amy said. “I want people to understand that everyone has OCD tendencies, but that doesn’t mean you have the disorder. The disorder can be really debilitating.”
Amy hasn’t given a talk on OCD in a while, she said. She has been more focused on her career as a speech pathologist, working with children with autism near her home in Virginia. But she remains connected with the OCD community.
“I hope that if I can show people that [I’ve been successful], a little middle schooler [who is] like me can get help and won’t be afraid,” Amy said. “I always feel like if I save one kid from what I went through, it’s all worth it.”
For more information about the Obsessive Compulsive Foundation of Western Pennsylvania, visit: www.ocfwpa.org/health
Madeline R. Conway: firstname.lastname@example.org, 412-263-1714 or on Twitter @MadelineRConway