OCD has ‘bullied her brain’ since she was 3. Now she’s using cycling to raise awareness.

This story is part of Made in Philly, a series about young residents shaping local communities.

At 3 years old, Sami Sorid had recurring thoughts of family members dying. In first grade, she couldn’t finish a test because she spent the entire time retracing her first sentence. By 9, she was washing her hands until they bled.

Today, at 19, Sorid continues to battle “the bully in her brain,” as she calls obsessive-compulsive disorder (OCD).

“It tries to force your brain to pay attention to things that aren’t really important,” said Sorid, of Mount Laurel, who is finishing her freshman year at the College of William and Mary. “It puts your mind in overdrive all day.”

OCD is often portrayed as a character quirk. Online quizzes prompt people to find out how OCD they are, and people make jokes equating the mental illness with a desire to be neat or organized, like Marie Kondo on the Netflix show Tidying Up.

But decades of research has shown that’s not what true OCD is. In reality, it’s the brain operating in a state of high anxiety.

“True OCD could not be more different than someone is who made happy by being neat and organized,” said Katherine Dahlsgaard, clinical director of the Anxiety Behaviors Clinic at Children’s Hospital of Philadelphia. “OCD is about doing compulsions to avoid something bad happening. ... It doesn’t make people happy.”

OCD affects about 50 million people worldwide. The disorder involves obsessions — terrifying thoughts of something that could happen — and compulsions — repetitive behaviors meant to alleviate the anxiety caused by obsessions.

For about half of all Americans with OCD, the disorder significantly interferes with their daily lives, according to the National Institute of Mental Health. Studies report that people with OCD have higher levels of social isolation and unemployment.

That’s not to say they can’t lead successful lives, Dahlsgaard said. There are effective therapies and medications that have helped countless people such as Sorid manage their symptoms. “But it’s not curable,” Dahlsgaard said.

Sorid often encounters people who say, “Don’t we all have a little OCD?” But that’s a misunderstanding of the disorder, she said. Some people might choose to check whether the door is locked or the oven is off before going to bed, but that doesn’t impair their daily quality of life. Forgoing those actions could cause overwhelming anxiety for someone with OCD.

To better educate people about mental illness, Sorid has launched a charity bike ride and walk in her hometown.

The event, called Move for Mental Health, was inspired by Sorid’s love of cycling. It was first held in 2017, and raised $6,000 for the Mental Health Association in Southwestern New Jersey.

This year, the event will be on June 2, and proceeds will go to King’s Crusade, a nonprofit focused on mental illness and addiction in Marlton.

“After the first ride, people came up and asked, ‘How can I help myself? How can I help someone else who is suffering?’” Sorid said. “That’s what I want people to get out of this event.”

The evidence for OCD is clear in brain scans.

Functional MRIs have shown that people with the disorder have greater activity in the orbitofrontal cortex, cingulate cortex, and caudate nucleus, along with other structures that affect how the brain learns, makes decisions, and processes emotion. These areas don’t respond to serotonin — a chemical that affects mood and helps different brain parts communicate — in the same way a brain without OCD does, researchers say. The structures also become less active after patients undergo therapy.

The missing piece is figuring out whether these neural differences cause OCD or are a consequence of it, Dahlsgaard said.

For now, scientists know there is some genetic component to OCD. Sorid’s grandfather had OCD and her mother does, as well. That helped them identify Sorid’s symptoms at an early age.

Early detection is important, experts say, because children with OCD are at greater risk for other disorders such as generalized anxiety, attention deficit hyperactivity disorder, and phobias.

About a third of adults with OCD experienced their first symptoms in childhood. For others, the disorder surfaces during young adulthood, often in college.

The good news, Dahlsgaard said, is that unlike many other mental illnesses, there are two reliably effective treatments for OCD.

Medication, typically selective serotonin reuptake inhibitors (SSRIs), has been shown to decrease symptoms in 40 percent to 60 percent of patients with OCD. A form of therapy called exposure and response prevention (ERP) works just as well and sometimes even better.

ERP involves gradually exposing patients to the triggers that cause anxiety, and showing them that their fears will not come true.

For Lauren Drake, a Pittsburgh native who was diagnosed with OCD at age 14, that meant learning to chew gum.

As a child, Drake thought gum was poisonous and anyone chewing it posed a danger. She knew it was illogical, but the fear felt instinctive — like fearing spiders even though you know they won’t harm you.

“I used to spend time in class watching people to see if they were chewing gum instead of paying attention,” said Drake, now a junior at the University of Pennsylvania.

If she did spot gum, Drake would have to fight the urge to get up and leave. “I would cry through classes because I wanted to stay and learn but I thought I was going to die,” she said.

At 15, she enrolled in an intensive ERP program that involved nine hours of therapy a week for three months.

The process began with Drake learning to sit in the same room as a cellophane-wrapped pack of gum. Slowly she worked up to folding paper cranes out of gum wrappers.

After two months, she was able to chew gum.

“It was horrible,” Drake recalled. “But also really great to feel like I accomplished that.”

Today, Drake carries a pack of gum in her bag. She’ll chew a piece every now and then to remind her brain it’s nothing to fear.

Sorid had ERP therapy as a child, and continues different forms of therapy and medication today. But she’s also found other ways to help manage her symptoms — such as cycling.

Sorid joined a cycling team in Mount Laurel when she was 14, making her the youngest member of the group by nearly 20 years. She heads out at 5 a.m. at least once a week to ride 25 to 40 miles with the team.

“I realized it was something that demanded my attention even more than my OCD,” Sorid said. “When I’m going down a hill, I’m not thinking about anything else.”

Cycling is also the perfect metaphor, Sorid has found, to help others understand what it’s like dealing with a mental illness.

“Sometimes when I’m going down the hills I feel scared because I don’t know what’s coming next,” she said. “But I always keep pedaling.”