If you’re struggling with your own mental health or a family member’s illness, you have to deal with extra appointments and supervision, finances and expenses, maybe even jail visits and court appearances, and more.

Most people have a personal support network, but for the unique problems a mental illness can present, a more educated, experienced, and patient ear is helpful but can be hard to find. Ones that understand the sensitivity and stigma associated with the illness and experiences can be even rarer.

One place those are freely available is at the Mental Health Support Group - Keweenaw Area, or “not-NAMI”, as the members sometimes call it. The group used to be a part of NAMI, the National Alliance on Mental Illness, and many of its members still are individual members under the Alger/Marquette NAMI group, but heightened requirements and lowered membership caused the Houghton group to give up its national affiliation in 2018. Determined to continue supporting each other, they reorganized as an independent support group.

Several regular group attendees agreed to interview with me, and I was able to attend part of one of their confidential meetings.

“NAMI is a wonderful organization,” Catherine Paavola said.

Paavola is a regular attendee at the MHSG-KA meetings, has a degree in school psychology, and is also a board member with Copper Country Community Mental Health. Her adult son was diagnosed with schizoaffective disorder with bipolar disorder in his mid-twenties and has struggled with the illness for more than a decade.

She said she prefers the term “brain illness” to mental illness.

“Nobody can tell me where their mental organ is,” Paavola said.

She said what the MHSG-KA offers is a place you can “actually pour your heart out…” without judgment, and without people tiring of hearing about the same recurring problem. Paavola said other maladies people usually either recover from or die from.

“Brain illnesses aren’t like that, they’re forever,” she said.

She said the support group can’t always offer help, but they can offer suggestions and encouragement.

“We pray for one another, you know,” she said. “But the most important thing is, we listen.”

One group participant agreed to speak with me but wished to remain anonymous to protect future employment opportunities in the face of stigma against their schizophrenia and obsessive-compulsive disorder diagnoses.

“I’m very fortunate, actually, to be fairly high-functional,” they said. “I hold down jobs, I manage my finances and other responsibilities, I engage in social situations.”

Other than the MHSG-KA, they also maintain a good support system of friends and, using coping techniques and medications, have learned to mostly manage as an individual.

Nonetheless, they see the value of support groups like MHSG-KA and even host other small, virtual groups in conjunction with the Schizophrenia Alliance.

One shortcoming of support groups in the pandemic was their reliance on streaming technology to overcome physical distancing requirements. Rural participants on unstable connections didn’t feel fully included.

“The video is in and out and the words are garbled…” Matt Olson said. “It’s better than nothing, but it’s not much better than nothing.”

Matt and Nola Olson have guardianship of their 20-year-old daughter, who’s been diagnosed with schizophrenia, anxiety, depression, obsessive-compulsive disorder as well as some other general health issues. She sat nearby listening as I spoke with her parents.

“I’m not going to say our daughter has the worst case, but it’s pretty severe,” Matt said.

They’re happy to have her at home and that she’s being cared for by people who love her, but they don’t feel they get the support they need to make it truly work well. One thing they find is particularly lacking is the availability of respite care for Nola, who cares for their daughter almost all day, every day while Matt works as a well digger to support the family.

“She’s still our daughter, we love her very much, but there’s a point where most people, their children are having lives of their own,” Matt said. “And we’re not there yet, and it creates a lot of stress.”

To care for someone with their daughter’s needs requires someone with considerable knowledge and training, and while members of MHSG-KA are supportive, most of them don’t have that experience, and not all of the Olsons’ extended family is understanding or supportive.

“My mom came around, and she does help us,” Matt said.

However, his mother is getting elderly and can’t help out for very long, or for overnight periods. Nola has recently been diagnosed with fibromyalgia, which her doctor believes is stress-induced.

The Olsons do like attending in-person MHSG-KA meetings when they’re available, saying it’s an “awesome time for sharing, for support.”

Another problem with the groups is trying to get the word out. Paavola said they’ve received little response, let alone support, from local healthcare offices, and the Olsons, who are interested in a schizophrenia-focused respite care group, don’t have a way of contacting other families who might want to join them.

CCCMH and other health organizations and state agencies might have that information but HIPAA law prevents them from being able to share it with group organizers without gathering permissions from each individual.

The “not-NAMI” group has recently resumed meeting monthly, in person, where they share round table discussions about themselves and their loved ones. You can contact the Mental Health Support Group - Keweenaw Area by emailing MHSGKA@aol.com.