Why NY Times Patient Voices series reads like an infomercial

I joined NAMI yesterday for “the research.” Here’s what was in my in-box from NAMI this morning: The New York Times (NYT) Patient Voices series offers intimate glimpses into the lives of NAMI members living with schizophrenia or schizoaffective disorder.

This is not just a random NY Times story. It is by and about NAMI members, and, judging from the e-mail below, not just any NAMI members, but NAMI-trained speakers who spread the gospel according to NAMI. Right above this NY Times series is an advertising banner that proudly states “Ask the doctor if NEW 23 mg/day Aricept is for your loved one.” NAMI has been heavily criticized, by Senator Chuck Grassley for one, for receiving most of its funding from pharmaceutical companies. If you are familiar with the NAMIWalks program, clicking on the map for just about any state quickly reveals that pharma is a large contributor to this cause.

NAMI turned me off very quickly when I first started to look for help for my son. I felt that if I listened to what they say, my son would be a patient for life, in large part because it emphasized the need for medications every step of the way. It had a dreary view of mental illness that I didn’t want to buy into, not just for my “loved one” but for the sake of my own mental health. A lot of my complaints have to do with the fact that NAMI speaks words of sadness and impact, of stigma and of lives less lived. Schizophrenia to NAMI is something to be managed and endured through a thin veil of pervasive sadness. Yes, sad is how it appears to me.

Through compelling vignettes and an interactive website, visitors learn how these illnesses can impact every facet of a person’s life, from relationships and stigma to work and faith. Listen to their stories and then join the conversation on the NYT’s Well blog.

NAMI’s In Our Own Voice program (IOOV) brings these kinds of personal stories to life. IOOV is a national, public education program in which trained speakers share their stories of mental health recovery with students, law enforcement officials, educators, health care providers, faith community members and other audiences.*

Personal stories are uniquely powerful. They illustrate how one can manage his or her illness and live a full, rewarding life. They put a face to mental illness and remind us that mental illness affects all of our communities. They show us that recovery is possible and encourage others traveling along their own paths to wellness.

Speakers not only educate others, but also find great fulfillment in sharing their experiences. NAMI members have many inspiring stories to share through IOOV, NAMI.org and our many publications. If you have a story you’d like to share, please e-mail yourstory@nami.org.

With your help, we can continue to educate communities across the country about mental illness one story at a time.

*NAMI’s In Our Own Voice program was started with a grant from Eli Lilly and Company.