By Yen Duong
Getting screamed at for something you didn’t do might ruin your day. But for people who have family members with mental illness, unanticipated outbursts can be just another part of everyday life that they have to cope with.
“I realized that taking [the screaming] personally wasn’t ever going to make anything any better,” said Don Tyson, president of the Charlotte chapter of the National Alliance on Mental Illness. “I started to depersonalize it and realize it was the illness that was raging at me and not my son.
“And I’d wait for those moments in time when my son would actually show up and the illness would fade into the background.”
Those types of personal revelations are par for the course in NAMI Family-to-Family classes, such as the one Tyson recently taught in a basement conference room of Mercy Hospital in Charlotte. For 12 weeks, 20 people met every Wednesday night to learn about mental illnesses and share their experiences as family members of people with diseases of the brain.
“It’s like a cross between an educational course and a support group,” said Kara Guerriero, who coordinates the courses for NAMI Charlotte. “You’re learning a lot in a really supportive environment and you’re developing relationships that can help carry you well past the course.”
‘I learned more here than I did going to social work school’
The curriculum, developed by NAMI psychologist Dr. Joyce Burland in 1991, includes content on topics such as the latest research about mental illnesses, self-care, coping skills for crises or relapses, and information about medications.
“I felt that I learned more here than I did going to social work school,” said retired social worker Cecilia Illing in a New Jersey accent as she sat next to her husband, Fred, on the last day of the course. The Illing’s 53-year-old daughter, who has bipolar disorder, recently stayed with Cecilia and Fred for six months so they could help watch their 15-year-old grandson while she figured out how to manage her disease.
“In social work school, you really don’t learn much about the family and what they have to do to survive the mental illness and to be able to help their loved ones,” she said.
The free course, which has been taken by over 300,000 people nationwide in almost three decades, improves family members’ ability to cope with and accept mental illness, according to a 2011 study. Role-playing exercises teach strategies such as reflective listening, in which family members emphasize their empathy and understanding by reflecting what their loved ones say back to them.
“Honestly, I was like, ‘This is dumb. I’m just repeating what they’re saying,’” said 36-year-old Nirmala David, whose sister was diagnosed with bipolar disorder 16 years ago. “And then when I started practicing it, you could see the body language changing in my sister. She was willing to be more open with me.”
David, who regularly flies to New York to visit her parents and sister, said that the class has helped both her relationship with her sister and her internal mindset about her sister’s illness.
“Society has deemed us to be problem solvers and fix situations. This is not something you can fix,” David said. “That exercise really helped pull you out of that ‘solution’ orientation. They’re hearing words of empathy [and] affirmation as opposed to solutioning and protesting and fixing.”
Support group and self-care
The course emphasizes self-care for caregivers. Vivian Wilson juggled coming to the class with raising her son, working as a nanny and parent coach and checking on her 79-year-old mother, who has anxiety and depression and lived with Wilson from 2008 to 2018.
“You can’t give of yourself over and over and over again and expect that you won’t need to be replenished after that giving,” said Wilson, who adopted her ten-year-old son from her brother, who has paranoid schizophrenia and cancer. “No one is going to do it for you, especially not a family member who is suffering from mental illness. We have to learn how to do it for ourselves so that we can better be able to continue to help them.”
Part of the challenge for family members comes from stigma despite the fact that mental illnesses are widespread. According to NAMI, one in five Americans are affected by mental illness.
“In my culture, there’s a big stigma with talking about mental illness,” said David, who is from India. “I’d love to see more people being more open to talk about it.”
The course offers a place for family members to talk about mental illness with each other and break that stigma outside the group, an “unexpected benefit” of the class, said 32-year-old Christina Carpenter, whose mother was diagnosed with bipolar disorder when she was a toddler.
“I think there’s some shame in saying, ‘Hey, my mom has bipolar disorder,’ whereas saying, ‘Hey, I’m taking this cool class on mental illness and trying to understand my mom better’ is easier to tell people,” Carpenter said. “Almost everybody knows somebody who is touched by mental illness, so they feel like then they can open up to me or ask me questions.”
Taught by those who know
The classes are taught by volunteers who themselves have taken the class and then completed a three-day training. Teachers foster a supportive environment by sharing their personal experiences and reflections. For instance, Tyler said that a sometimes-depressing challenge is that mental illness can take away the idea of a “plannable future.”
“Having a family member with a mental illness is a day-to-day thing,” said Tyson, who first took the course after his son was diagnosed with bipolar disorder. “You got to get through this day, and then wake up and get through the next day. And any ideas about what you’re going to get done two years from now or two months from now go right out the window.”
At their last session on May 29, before digging into a large potluck dinner which included pasta, salad, deviled eggs, pimiento cheese and a slew of desserts, the group read aloud their final handout, 10 mantras on how “to let go.”
“What I learned here was that it’s not my fault,” said Illing, the New Jersey grandmother. “That was a good feeling. It was a weight off my shoulders. I don’t worry like I used to; I don’t feel the guilt. I do what I can do.”
This course was the seventh one that Tyson had co-taught. Tyson and the rest of the NAMI Charlotte board, including Guerriero, volunteer their time to run the courses and several monthly support groups.
“The first day, the majority of people that came into that class [had] heads down, shoulders slumped forward, frowns on their faces, wondering ‘How the hell are we going to get through this?’” Tyson said. “When they left [on the final day], they were happy in that moment. And when you string those moments of happiness together, [you] discover that happiness is possible. And that’s something they didn’t have before.”
This article was originally published on Family members of people with mental illness find support, skills