Community discussions break down walls of stigma of mental illness in youths

Lisa Johnston | lisajohnston@archstl.org
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Taking a walk in Francis Park is how Eli Engel decompresses after school.

He talks with his mom, Tamara, about how his day went and how he's feeling. Checking in on his mental well-being is an important part of their routine.

The 17-year-old has an outgoing, fun personality. He likes writing rap lyrics under the pseudonym "Bulldog." His favorite subject is math, and he's a strict vegetarian, citing a need to protect all creation — even little ladybugs.

But the last several years have been tough on Eli, who has bipolar disorder.

Tamara Kenny was working on her master's degree in social work and mental health when she started noticing a difference in her son, who was an eighth-grader at the time. "There was a lot of rage that didn't make any sense. It didn't fit into his personality," said Kenny, advocacy director for Catholic Charities of St. Louis. Eli already had a diagnosis of autism and was seeing a psychiatrist. "So we had someone to go to, to just say, we're seeing very strange behavior that's not typical for him," Kenny said.

Eli often reflects on how he's feeling in the rap lyrics he writes. He relates how he's feeling to being with Jesus in heaven someday. Some days, he thinks the pain would go away if he were in heaven.

He's very direct when asked what he wants people to know about mental health. "You shouldn't treat people differently because they may have mental illness," likening it to someone who breaks his arm and needs time to heal. "We may be different, but we're not worse."

One in five children ages 13-18 live with a mental health condition, according to the National Alliance on Mental Illness. The average delay between the onset of mental health symptoms and intervention is eight to 10 years. Part of the challenge of treating children is breaking through the "invisible wall" — the stigma of mental illness — said Eli's father, Rick Engel.

Openly discussing the topic is one way to break through that wall. Along with several other parents, Tamara Kenny shared Eli's story at a community discussion on mental health, hosted last month at Incarnate Word Parish in Chesterfield. The discussion was sponsored by Independence Center, which provides community-based rehab for adults with severe and persistent mental illness. The hope is that the conversation expands to other community groups who want to host their own discussions.

Earlier intervention will lead to better outcomes for children as they enter into adulthood, said Kate Tansey of the United Way of Greater St. Louis, who helped organize the talk at Incarnate Word.

"We want to bust down the door on that stigma and fear," Tansey said. "We hope to start a chain reaction of conversations for parents and caregivers. Every story matters, but every story is different. The key is learning your story and paying attention to it."

Sue Schultz' daughter, Katie, was 5 when she began noticing symptoms of anxiety. It progressed slowly over several years, and by age 9, her family knew they needed to intervene. "She had gone through a period of not wanting to go to school and started getting stomach aches, shingles. It was all building up inside of her," Schultz said. In addition to seeing a therapist, Katie started taking an antidepressant medication.

During those years, Schultz learned techniques to approach her daughter when she was experiencing anxiety. "I would try to talk with her, not to her — that's a big difference," she said. "I would restate whatever she was saying to make sure I understood ... The biggest thing is I would acknowledge whatever she was saying as real to her. It may not be reality, but to her that's what's real. Children really need to have a parent to have their back. I would always say, if I don't know the answers, I'll find somebody who knows the answers."

Mental illness often becomes jumbled during the formative years of childhood. As children grow and mature, behavior changes over time. That's why it's sometimes confusing for parents to know if it's a discipline issue or if something bigger is going on.

"It's so easy for people to write it off," said Kenny. People might say, "well, he's a bad kid — it's a discipline problem and the parents aren't doing it right. But it's important for parents to trust themselves and not be ashamed to call the pediatrician and say, 'I don't know what's going on.' You can't just sit and wait, and you can't leap to conclusions. Because none of us really knows this stuff. We're not instructed as new parents about mental health. It's really important to trust your instincts — don't be afraid to do something." 

What does this mean for our community?

1 in 5 children ages 13-18 live with a mental health condition

The average delay between onset of symptoms and intervention is 8-10 years.

Sources: NAMI and Independence Center 

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