Setting NAMI Priorities: Serious Mental Illnesses? Trauma? Poverty? The “Worried Well?”

The National Alliance on Mental Illness bills itself as ” the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.”  As a lifetime member of NAMI, active supporter of NAMI, and frequent speaker at NAMI groups, I greatly admire and support that goal. But I’m also curious about what that mandate encompasses.

What are NAMI’s priorities when it comes to specific mental disorders?

A recent conversation with Fred Frese and two emails from readers are responsible for my curiosity.

Fred has schizophrenia, is one of the finest speakers I’ve ever heard, and has been a tireless advocate for decades. If memory serves me correct, he has attended every NAMI convention since it was founded in 1979. In recalling NAMI’s history, Fred said that many of the women who helped found NAMI were adamant about challenging the then-commonly held belief that schizophrenia was caused by overbearing mothers.

This helps explain why NAMI quickly embraced the theory that severe mental disorders are genetically based, biological illnesses. Some founders felt so passionately, Fred said, they refused to even discuss the idea that childhood trauma could cause a severe mental illness such as schizophrenia.

Let’s move now to the two emails that I received recently.

When I look at NAMI, I see an organization that is doing too many things, and probably duplicating the work of other non-profits.  Just by their website alone, I see articles on bullying, “fighting stigma” through a bike ride (really? is it a magic bike?), veterans with PTSD, and parenting an ADHD child.

 I thought NAMI was there to help the severely mentally ill (SMI), which I define as illnesses such as bipolar disorder and schizophrenia, and their families.  Am I mistaken?  Should I be looking to another organization instead?  Why doesn’t NAMI consider leaving the veterans and children’ issues to the other strong non-profits who are already addressing those important issues?   Then they could focus solely on the needs of the SMI and their families.

Selfishly, I wish NAMI would put SMI families’ needs first.  We are the ones on the front lines, and when we are educated about how to use our local resources, our family members will get the care they need and simultaneously, we will naturally be advocating, thereby reducing stigma.  Isn’t helping families in this regard more important than running bike rides to “fight stigma?”  Am I wrong that other sectors, like cancer or Autism, do a better job of avoiding duplication?  In those sectors I see one non-profit will focus on policy and advocacy, another on serving families and kids, another on serving adults, others fund medical research, etc.

And please, if there is another mental health organization out there that is truly dedicated to serving the SMI and their families, please tell me as I may just be uninformed.  I always thought NAMI was the “main” group out there, but I see a huge gap in terms of helping parents and siblings navigate the system now and plan for their loved one’s futures.

Both of my parents have mental illnesses. I have lived with serious, diagnosed mental illness for over 25 years – I’m 45. But I don’t see this as evidence for a genetic or other straightforward biological cause for my “issues”.  Victims of trauma – which both of my parents clearly are – tend to repeat what has been done to them – to their children. What if NAMI’s stubborn clinging to medications and the medical model has more to do with guilt than reality?

My problems started the day I was born – due to emotional and other abuse I was subjected to – and I am not the exception – but the rule. I suggest you look at the evidence base that early traumatization is the root cause of many “mental illnesses.” There are many I could cite – from the well known Adverse Childhood Events (ACE) study – to more recent evidence that up to 90% of people with “psychotic disorders” – had experienced serious trauma as children, whether they could remember it or not.

How happy NAMI parents must have been at the comparison to diabetes – but this is not diabetes. There are ways other than genetics that behavior and issues are passed down from generation to generation. This is even more true from mental health issues than for addictions, in my opinion.

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