In 2011, my family was struck with mental illness and I was in shock. I use the word “struck” because it truly felt that our family system was struck with a tornado or similar catastrophic event. I was unprepared for the crisis. I had always been able to figure everything out and find answers to help my loved ones but this time I was dumbfounded. Even the psychiatrist that knew our family member well was devastated by the situation.
We began the journey of brief hospitalizations and trips to the emergency room with no solutions. It seemed that the doctors just put a bandage on the situation and sent us home to deal with this heartbreaking situation alone.
I found out about NAMI from our financial planner’s assistant. We had to reach out for financial help because our insurance denied so much care. I discovered NAMI’s online resources and felt some minor relief. There were so many resources and I discovered that our family was not the only one suffering. It took me several months before I could work up the energy reach out for help in person. I was so fatigued from caretaking.
I signed up for the NAMI Family-to-Family course in 2012 and it was the beginning of my healing. I cannot describe the comfort I felt to sit in a room with other caregivers/family members who were suffering from the same stress, pain and heartache. Over the course of twelve weeks, I gained hope and began to feel empowered. Armed with knowledge about mental illnesses, medications, stigma and advocacy; I began the latest chapter of my life.
I transitioned from fitness instructor to behavioral health advocate. It was a slow process but it began with organizing Zumba fundraisers for NJ NAMI Walks. I reached out to my community to Stomp the Stigma of mental illness and spread the word about NAMI. People began to approach me to share their stories of mental illness in their families. I became more transparent and let go of my shame.
My family situation was still in chaos at times; however, I no longer felt like a victim. I attended the monthly NAMI family support meetings in my county. I was introduced to remarkable leaders in our community who advocate for change. I attended the annual NAMI state conventions. When I discovered how much the stigma affects the inadequate care that consumers with mental illness received, I became enraged. NAMI gave me opportunities to channel my anger in a productive way.
I applied to become a member of the NJ Behavioral Health Planning Council and the NJ Parity Coalition. I became more empowered and learned about legislative advocacy. Meanwhile, I kept losing insurance appeals for money we spent for my loved ones’ medical care. I had my own struggles with depression and substance abuse when I was younger and my parents did not have to go bankrupt to find medical care for me.
Slowly, I was given opportunities to speak in pubic about the inadequacies. I visited church groups and other community organizations. I finally agreed to be interviewed on the NAMI Mental Health Matters radio program. I spoke at a media event in the NJ Governor’s office, testified to the NJ Legislature, attended several Hill days and visited my members of Congress. I testified in Washington DC at The New Frontier of Mental Health and Addiction hosted by the Kennedy Forum. Most recently, I testified to the President’s Commission on Combating Drug Addiction and the Opioid Crisis about insurance denials and the lack of enforcement of the Mental Health Parity Law.
I am now the co-chair of the NJ Behavioral Health Planning Council. I am one of the few non-professional family advocates on the council and I am honored. I was designated a NJ Advocacy Leader for NCADD (National Council on Alcohol and Drug Dependence). None of these titles matter except that they open doors for my voice to be heard.
NAMI has helped me to gracefully accept the life I’ve been given, rather than the one I had planned. I will be forever grateful to NAMI and all the special people I have met on this journey.