written by Amy Petré Hill
“Come and hear, all you who fear God, and I will tell what God has done for me.” Psalm 66:16.
I remember the first time I shared my story of mental health recovery beyond my circle of family and friends: just thinking about it makes my palms itch and echoes of knots to form in my stomach. It was 2009, federal legislators were arguing fiercely about President Obama’s Patient Protection and Affordable Care Act (ACA), and I was working with faith-based health care access organizations to convince some fiscally conservative U.S. Representatives to vote for the bill. Someone asked me whether we should be fighting to ensure parity coverage for mental health challenges and substance abuse disorders in some employee insurance programs. This individual pondered, “These folks don’t usually work full-time jobs, so why not let this drop and make sure they will be covered under some other program for disabled people?” I opened my mouth to share statistics on the frequency of mental health challenges in the general population—one in four people will deal with a mental illness in their lifetime. But what came out of my mouth was my own story of struggle with mental illness and how vital my husband’s employee insurance of mental health services was to my recovery.
Like most people with a significant mental health challenge, I did not “look sick.” I had a nice apartment, a law degree, and was a trusted leader in my health care organization. Yet, just four years before, I experienced a period of excruciating mental illness. Immediately after completing a disability law legal fellowship and beginning a solo special education law practice, I underwent needed abdominal surgery. I successfully recuperated from the surgery, but my brain seemed to explode as soon as my body recovered.
I was afraid to sleep, as every time I closed my eyes I would experience horrible nightmares. During the day, I would find myself hiding in my locked bathroom, terrified of someone coming to hurt me even though I was safely at home. I could barely concentrate and experienced constant intrusive thoughts of throwing myself off the balcony of my high-rise apartment. What was happening to me? Using my brain had led to success and respect in the larger community. Who was I without a fully functioning brain and my job as an attorney? I had no idea. My husband, who was consistently loving and supportive throughout my mental health crisis, was unsure how to help me.
Looking back, I see I had suffered from unacknowledged trauma since childhood, but I had always managed to hide the symptoms from others and deny them to myself until my early 30s. Like many people who experience complex trauma, the effects did not hit me until years after the traumas occurred. Luckily, after a couple of misdiagnoses—a common occurrence for people with complex PTSD—I found a therapist who understood complex trauma and faithfully walked with me through the intense therapy and medication support I needed.
During this process, I closed my newly opened solo special education practice and mourned its loss. I knew I could not represent my clients with the focus they deserved, so I transferred my clients to special education law colleagues, saying only that I was “suffering from a serious illness and needed to focus on my health.” I am sure many thought I had something like cancer and some offered support, but I withdrew from colleagues, ashamed and blaming myself for not being strong enough to “deal with stuff that happened years ago.” Closing my law practice meant we lived on my husband’s income, and without his company’s generous insurance coverage of mental health conditions, I could not have afforded the needed mental health treatment.
By the time I shared my story with my fellow advocate, my symptoms had abated, I was well on the road to recovery, and I had developed a sense of self that was not completely tied to my work. I had reengaged with the Christian faith I walked away from as a teenager and come to recognize the constant, supportive presence of God that had helped me hold on during my darkest hours. I had started using my legal skills doing pro-bono special education work and advocating with faith-based environmental justice and health care access organizations. But until that day in 2009, I had not told my own story in support of legislation for people like me, people living with a serious mental illness.
Speaking honestly of my experiences with mental illness was transformative. The individual who heard my story became a champion for mental health parity in the ACA and I experienced how my story of mental illness and recovery could be a source of healing for other people and a powerful advocacy tool. We know from our experience of the New Testament that stories have tremendous power: our hearts are softened and opened by stories. Personal stories undermine the inaccurate images of people with mental illness portrayed in the media and bring the dry mental health statistics to life for other people. And our country is in desperate need of such stories right now.
As you read this, U.S. Senators are considering repealing the ACA and replacing it with a health care law that will roll back the requirement that health insurance plans cover mental health and substance use disorders at the same level as they cover other heath conditions. Further, it will undermine the recent expansion of Medicaid to individuals with mental health challenges and low incomes so they can access need mental health care and recovery in the community. To learn how your story can make a positive difference in our country, check out the NAMI National Priorities for 2017 website. Sharing your story can transform you and your community for the better.