By James Kinneen
Hometown Weekly Reporter
“I have often written in not so charitable terms ‘where’s my blanking casserole?’ If, God forbid, someone’s family member breaks an arm, has cancer, or is in a car accident, then what happens? Everyone who knows them brings over a casserole and says, ‘what can I do to help you?’ But with mental health, they stay away.”
This was how Newton-Wellesley NAMI board member Steffi Karp described the complete lack of support most families who are dealing with mental illness receive from the community. Worse, while neighbors might want to stay away for whatever reason, Karp noted that teachers, clergy members and even doctors are slow to tell both people personally dealing with mental illness and their family members that there are places they can receive support. Specifically, that they can receive help through NAMI, an organization whose meetings and initiatives are frequently publicized in the pages of Hometown Weekly.
“NAMI is the National Alliance on Mental Illness. I often refer to it as the United Way for mental health. We have a lot of support groups not only for people with mental illness, but for family members. I’ve been at meetings where there are friends of someone with mental illness, who they felt they needed support because mental illness takes over a community, and it certainly takes over a family. One of my pet peeves is that a lot of professionals - and that goes from educators to clergy to mental health professionals - when they come across a child of any age or a family that has mental health issues in it, which mind you is one in five Americans, rarely do they say: ‘This is larger than you are. You will need a support group.'”
Karp speaks from personal experience. She noted that at Mass General Hospital, she had a family member tested for a mental health issue, only to be handed a folder with test results and sent out the door, without the mere mention of any support group. Why? There’s still a stigma around mental illness. Karp noted that the stigma behind mental illness is so strong that she compares it to a recent story about Pakistan, where COVID deaths were being attributed to something other than a virus, as the belief is that a pious enough life will protect one from COVID-19.
“If people pretend something doesn’t exist, it gets larger and larger. A lot of what we hear in NAMI support groups is about dual diagnosis, which is somebody that has one illness - say, schizophrenia - and then they get involved in drugs, so now there are addiction issues, also. It’s very difficult, but when people don’t talk about something, it just gets worse and worse and worse. It’s just like COVID. If you don’t test for it, it just is going to get worse.”
While COVID has driven NAMI meetings online, there is a still a set curriculum that is followed at the meetings. This curriculum emphasizes family-to-family contact, showing individuals that there are others just like them, through no fault of their own, going through the same struggles.
“It’s a prescribed curriculum. There are support groups and a multipart education program. A lot of family members bond while going through a weekly course with others whose kids are going through mental health issues. That’s called 'family to family,' and it’s a very important part. There are also ongoing support groups where everyone goes around first speaking about what the values of NAMI are: what goes on in this room stays in this room, this is a judgement-free zone, that kind of thing. And then people have a certain number of minutes to talk about what has been going on in their lives all week. At NAMI meetings, people meet someone else, because as I mentioned, the first round is rules and values, the second round is people speaking about their situation, and then at the end each of those, people check in saying 'today I’m a two,' which means people really need attention, where someone else might say, 'I’m okay, I am just here to help others. I'm a seven.' That way, the third go-round is for the people who are really in a tough situation, so the other parents are listening in and can either offer suggestions based on their own experience, or just be sounding boards. Sometimes, you just need someone to listen to you. And sometimes, you need people to say 'have you ever tried this approach, this program or this doctor?'”
Outside of basic support, NAMI meetings have a more functional role: a community testing ground for methods, doctors and sometimes medications. Often, NAMI families will consult with each other about what worked or didn’t work for their affected person, as a lack of funding and a for-profit medical system have left mental illness issues poorly treated.
“The state has a Department of Mental Health, but - and I’m sure this will come as a surprise to you - it’s underfunded and bureaucratic. Schools are told to deal with this, but schools don’t deal with this. As I mentioned earlier, it would be so much more helpful if all the teachers were to know something about mental health so that when a family member comes to them and says 'my child is doing this that or the other thing,' they say not only ‘I’m glad you felt you could talk to me,’ but also, ‘do you know there are support groups and that you’re not alone?’ Nobody at NAMI asks for proof of diagnosis because, for one thing, diagnoses change all over the place. There’s a lot of bad medicine out there and a majority of psychotropic drugs are prescribed by PCPs, as opposed to somebody going to a psychiatrist and going though a battery of tests. In what other situation do you have that? If, heaven forbid, you had some kind of rare cancer, you wouldn’t go to your PCP and say 'do you think you could give me some chemo?' You’re up against a bad business model of people in the medical profession, on the business side, saying 'sell this to your patient.'”
Especially now with lockdowns and the coronavirus crisis in general leading to increased issues with mental illness, Karp continually came back to one idea: for both the mentally ill and their family members, you need to know you are not alone, and that NAMI is here to help you.
“Anyone who has any mental health questions can call during the business day and get advice for whatever their issues are regarding mental health. And teachers, clergy, physicians and psychologists should know: let every family you deal with know they’re not alone, because just knowing you’re not alone can make a huge difference in despair.”