Katie Kellar was 12 when the dark, unspeakable thoughts that would recur and torment her for years first intruded.
She developed rituals to keep the thoughts at bay: She counted to five before getting out of bed; if someone touched one hand she had them touch the other to preserve symmetry, and she used hand sanitizer frequently.
“I had no idea why I would do these things,” says Katie, now 16, sitting alongside her mother, Patty Kellar, at their favorite Starbucks at Highland Park Village. “I tried to get control, to get rid of the thoughts. It was scary. I would go into a panic.”
Katie suffered from obsessive-compulsive disorder, a neuropsychiatric disorder defined by recurring unwelcome thoughts and repetitive behaviors, according to the Obsessive Compulsive Foundation Inc., a nonprofit mental health organization based in New Haven, Conn.
OCD is the fourth most common neuropsychiatric illness in the United States, with one in 40 adults and one in 200 children suffering from OCD at some point in their lives. That adds up to at least 5 million people experiencing the symptoms at any one time, the organization says.
It’s also a disorder for which too few people get the help they need, says Peggy McMahon, a psychologist in Plano specializing in OCD and anxiety disorders, who recently helped found a local nonprofit group to help people with OCD.
“A lot of people don’t know what it is,” she says. They might have symptoms that pop up on the Yale-Brown Obsessive-Compulsive Scale — frequent hand washing, excessive cleaning, counting, straightening and checking what they’ve done over and over. But they will pass it off as, “Oh, I’m just stressed.”
Although stress is a factor, it’s not the cause, McMahon explains. As with a learning disability, “something in your brain is not functioning correctly,” she says. She likens OCD to having a faulty alarm system.
“An alarm center is supposed to go off when there is a real danger, like smoke in your home. With OCD, the alarm center keeps going off when it shouldn’t — telling you to lock a door when you’ve already locked it, or to wash off germs when you’re already clean.”
The sooner the brain is retrained, the more effective the treatment, she says.
That’s why McMahon teamed up with other professionals and affected families to form OCD Texas last year. The goals of the nonprofit organization, an affiliate of the International OCD Foundation, are to spread awareness and provide resources so people know when they need help and where to get it. They held a public meeting in Richardson in February and plan their next one in Houston on June 11.
Lisa Buchanan of Plano was a keynote speaker in February, talking about her self-published OCD Hope Book for Parents of Children With OCD (available by emailing ocdparenthelp@yahoo.com) and the support group Parents of Children with OCD for adults and teens.
Buchanan says she wishes OCD Texas had been around when she discovered her son Conner had the disorder.
She says she had no idea what to do the first time she found Conner at age 8, “curled up in a ball, saying, ‘Mommy, make it stop.’”
Bewildered, Buchanan worried, “Is he going to end up in a straitjacket in a mental facility? I jumped onto the Internet and read stories of despair. There was not a lot of hope and there was not a lot of information.”
After she found and started working with McMahon, she learned about the cognitive-behavior therapy and medication that would help Conner, by adjusting the balance of serotonin in his system.
Serotonin, a neurotransmitter that regulates mood, appetite and sleep, plays a role in memory and learning and contributes to feelings of well-being. Cognitive-behavior therapy uses a technique called exposure and response prevention, in which the patient is exposed to feared objects or ideas and is discouraged from carrying out a compulsive response.
When Conner isn’t able to get a thought out of his head, they take turns stating his fear until he is desensitized to it.
She reminds him that he is not his OCD and that Conner’s brain needs to fight the OCD brain when it starts telling him to worry about things he doesn’t need to worry about.
“The OCD brain is a liar that is always trying to trick him,” she says.
During the conference, Buchanan showed a slide of a picture Conner drew of his OCD at the start of therapy. It looked like a great, fierce dragon. Then she showed a slide of how Conner, now a relaxed 15-year-old with an easy smile, sees it now. It’s still a dragon, but much smaller.
Together, she says, they learned that his OCD might never go away, but that they can keep it from growing.
Katie says she knows now that the reason her OCD worsened from age 12 to 15 was because she kept it a secret.
“I thought I could control it,” she says.
She also thought her family would recoil from her if they knew.
But her family was eager to help. Her parents quickly found doctors to provide her with medication and therapy. As with Buchanan, they learned techniques to support their child.
“I was surprised and I was glad,” Katie says.
Katie enjoys working with children and aspires to be a first-grade teacher. She expresses pride that she recently ate a cookie from an open plate during baby-sitting and regularly comes home afterward without feeling compelled to bathe and “disinfect” herself.
“I’m doing a lot better,” she says.
“I used to smile and pretend I was happy and everyone assumed I was happy, but I was dying inside. Now I don’t have those thoughts and I don’t get upset. I just want to tell everyone that no matter what thought you’re having, nothing is too bad to tell. You will be surprised at the response you get. There’s help.”
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OCD symptoms
Typical obsessions are dirt, germs and contamination, fear of acting on violent or aggressive impulses, feeling overly responsible for the safety of others, and an inordinate concern with order, arrangement or symmetry.
Typical compulsions are repetitive behaviors such as excessive washing, cleaning, checking, touching, counting, arranging, ordering or hoarding.
Typical treatments are medication and cognitive-behavior therapy (in which the patient is deliberately and voluntarily exposed to feared objects or ideas and then is discouraged or prevented from carrying out the usual compulsive response).
Source: Obsessive Compulsive Foundation Inc.
Where to get help
OCD Texas, a nonprofit support and advocacy organization: public.ocdtexas.org
The International OCD Foundation, an international nonprofit group: www.ocfoundation.org
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