Advocating for Mental Health
Updated: Feb 14, 2020
This week, I spent the day in the Vermont statehouse in Montpelier for Mental Health Advocacy Day. I get NAMI's (National Alliance on Mental Health) newsletter, though, I have to admit, often don't read it. But on Tuesday morning, I happened to open it and see that Advocacy Day was the next day. At first, I came up with excuses not to go - I have to work, I have therapy that afternoon, etc. - but quickly decided it was something I wanted to, and felt I should, be a part of. I consider myself a mental health advocate, in addition to being mentally ill, but I often speak out alone from behind my computer. I wanted to meet other mental health advocates, hear their stories, and connect with other people working in this space.
Over coffee and bagels I met a woman who works for Washington County (where I live) Mental Health Services. She asked who I was there with and I said myself, that I was there to listen and learn and offer my own experience.
I got to sit in on the VT Department of Mental Health Commissioner's testimony on DMH's 10-year plan to improve mental health services in the state in front of the Health Committee. The room was packed by various stakeholders who cared about making improvements to our mental health system. She talked about the need for a more holistic and integrated system that recognizes the importance of mental health care to our health care system, how it should not be viewed as separate or a special interest. She talked about the need for increased awareness, education, and training (particularly of hospital staff and law enforcement), the need for expanding Medicaid services and increasing affordable access to care.
In my opinion, we need to do all that and a lot more. We need to work to speak out and reduce stigma around mental health, which is no easy task. We need to not be ashamed to ask for help, and further, we need to get that help when we do ask. In Vermont, there's a real dearth of facilities, available inpatient beds, and options for those in a mental health crisis. Further, we lack funding and resources for preventative care before someone is in crisis mode. Worse, what services do exist have real barriers to accessing those services, from affordability to transportation. We're in a rural state and many folks need to drive hours to receive the care they need. This especially limits options for low-income Vermonters.
In so many ways, I'm very fortunate. I have a great mental health team behind me, I can afford the prescriptions I need, I can drive the four hours each week for services, and have a flexible job that allows me to spend two hours a week in therapy. But, even with insurance, I've had to pay out-of-pocket for psychoanalysis twice a week for the past two-and-a-half years. My husband and I made the decision to dip into our savings to cover these services, and my therapist even offered to reduce her already-reasonable rate, but it wasn't enough. A few weeks ago we had to switch from the service both my therapist and I felt was the best fit for me back to regular psychotherapy so insurance would cover it. This is the second period of time in my adult life that I've had to pay totally out-of-pocket for therapy, despite having insurance. For several months, we were doing psychoanalysis three times a week and I had to drive an hour at 6:00 a.m. to have therapy before work, which was a real emotional challenge (psychoanalysis can be draining, exposing, vulnerable, and I often cried. A lot.). I was on new medications which made me extremely drowsy, which I told my therapist several times. One morning, I could barely keep my eyes open on the road, which we discussed during my session, and on the way to work I fell asleep at the wheel, ramming into the guard rail on a bridge and totaling my car. Thankfully, no one was hurt. We adjusted my medications and cancelled our early morning sessions. It could have been so much worse.
When I was in a manic state and had been for more than a week, my psychiatrist (the third mental health professional I'd seen that day) wanted me to go to the ER, the only option for a mental health crisis. I begged her not to send me there, knew I'd sit there all day amidst the bright lights, the chaos of the ER, have to be around strangers and felt extreme anxiety just thinking about it. I knew there was nothing they could do for me and that triggering space would make things much worse. I convinced the psychiatrist to release me, give me something to help me sleep for the first time in over a week, and had my supportive husband take me home to rest in the peace of my own space. I had to advocate for myself and not everyone can do that. Not everyone has a husband to drive them home and care for them, or a safe space to heal.
In 2016, there was a tragedy in my community. A man driving the wrong way on the highway at 100 miles an hour hit a car, killing five teens. He had been to the ER for a mental health crisis three times that day. While it seems that the hospital staff did try to help, he was allowed to leave and five children lost their lives. What more could we have done to prevent this horrific accident? How can we turn away people who need help?
When I was thirteen and anorexic, I spent a week in a teen psychiatric ward two-and-a-half hours away because there were no options for me closer to home. If a week doesn't sound like a lot, I'll venture you probably haven't spent much time in a psychiatric ward, particularly one who, a guy I met on Mental Health Advocacy Day who'd spent time in the same facility, called "a real shithole" (I didn't disagree.). My goal became, not to get better, but to never go back to a place like that again. That experience terrified me from seeking help for years. If that's what help looked like, I thought, no thank you. My parents tried to be supportive, but they didn't know how. They did their best with little guidance or support. They didn't know about the resources that did exist or what to do.
My favorite part of Mental Health Advocacy Day was hearing other Vermonters' stories, which made me feel less alone. People bravely shared their experiences of being suicidal, of living with developmental disabilities and schizophrenia, of struggling with post-partum mental health issues, of having children in mental health crises needing to wait more than a month to get the treatment they needed. While these stories were emotional and heartbreaking, they were also inspiring. We were there, together, speaking up. We had a presence. There were hundreds of us saying "I'm here." Legislators listened. I wrote to my representative about how important mental health care is to me, and she promptly responded thanking me for sharing my story.
I was interviewed by local news on Mental Health Advocacy Day and was happy to offer my story to anyone who needed to hear it. I want people struggling with their mental health to know they're not alone. That's been the best part of learning to speak up and share my experience; so many people - friends, acquaintances, strangers - have reached out to thank me and to share their own experiences. When I was preparing to talk about my mental illness during my graduate lecture last year, I texted one of my best friends and told her how nervous I was to stand at a podium and say "I have bipolar disorder." She told me to remember that I wasn't just speaking for myself; I was speaking for everyone in that audience who felt they didn't have a voice. Some of those people came up to thank me and tell me "me too."
I want you to know that you have a voice, you have an important story to be told, and it needs to be heard. Over the past few years, a college acquaintance whom I didn't know particularly well but had first-year studies poetry with and was always friendly with, reached out on social media and talked about being suicidal, being admitted to a mental health facility. She wrote about needing support, hoping people would reach out. I did. I sent her messages telling her how much I always appreciated her kindness, her sense of humor, and her thoughtful comments on my poems. She thanked me in one post in which she tagged people who were helping her get through difficult stuff. I hope I'd helped ease some of her pain. This Christmas, she killed herself. Despite asking for help, sharing her struggles, the pain was too great. Though we weren't close, I was heartbroken when I heard the news. I wish I could have done more. I wish I could have been there to listen when she needed it most. I want you to know, my friends, acquaintances, and strangers, that I'm here if you ever need to reach out and I'm a really good listener.