A lived experience perspective on advocacy in mental health research

Having experienced traumas as a child, I always felt a sense of something having been removed or absent that was necessary for true wellness. Sort of like an unstable isotope where a proton or neutron has been removed — even if it manages to hold together, there is something lurking just beneath the surface that indicates the system is on the verge of collapse. Ironically, I was not very self-aware when I started having problems of the psychotic variety. I wouldn’t say I fully accepted and came to terms with having schizoaffective disorder until after I had had several breaks and done substantial damage to my personal and professional life. Of course, when I recognized my own illness in its totality, I jumped without hesitation into treatment, advocacy and community support and have never looked back, or faltered in my acceptance and desire to work with and through my disorder.

Credit: Rachel Barnum

Honestly, it was not great at first given I was highly contentious and in denial of the fact that I had an enduring problem on my hands, not just one little weird psychotic fluke after another. As the proverb goes, you can take a horse to water, but you cannot make them drink the water — even if they show up to every appointment and take the medication as directed. That is why I really embrace a substance abuse model of recovery for mental health. Instead of an authoritarian approach to treatment — in which the person is prescribed a rigid path to recovery guided by a narrow definition of what a successful recovery is — this model aims to reach each person’s full potential by empowering and supporting their own self-directed path to recovery.

In my opinion, one has to really be aware and accepting of one’s condition to make substantial enduring progress in treatment. That being said, at this time I find treatment highly effective and am very engaged and involved in my own care.

Honestly, I felt very lost after my psychotic break in law school, despite it being a real turning point in my treatment and relation to my disorder. Now that I was sick, and I knew it, what would the future look like? I started googling: ‘Are there even any schizophrenic lawyers out there?’, ‘Do they manage to pass the bar and character and fitness exams?’, ‘How do they manage in their profession?’, ‘Are they successful?’ and ‘Are they happy?’

On a lucky whim, I contacted Elyn Saks. Elyn is a recognized scholar in mental health law who has been open about her struggles with schizophrenia and even published her memoirs in 2007 (a book for which she garnered several honors). I emailed her saying “I’m so confused and troubled; what is it like on the other side of things?” And she was kind enough to email back and to even do a call with me. That is where the idea to be an advocate originated. She suggested I might find advocacy fulfilling and an important part of my recovery journey, and that is exactly what it has been.

I also reached out to Elizabeth Pratt, who also has firsthand experience with mental health challenges and is an active advocate at the National Alliance on Mental Illness (NAMI). She also suggested that advocacy can be very empowering both for myself and others; I just had to forgo the opportunity to be anonymous as a mentally ill person. But to me there was no dispute: solidarity always runs deeper than secrecy, and if I could help even one person, I would. Advocacy has definitely helped me to remain steadfast in my acceptance and recovery and to have hope that the future is more potent than any struggle I might experience now.

“Advocacy has definitely helped me to remain steadfast in my acceptance and recovery”

I think medicine has a longstanding history of placing more value on the person with the power to diagnose on the basis of their medical training knowledge and skill than on the person with the condition. And although due deference is warranted, no one knows the inside of one’s head like the inhabitant. Although the input of a person who is undergoing a mental health problem might need to be sorted through and edited for clarity, they offer information about the problem that no one else can.

I would say that you should definitely consider participating in research as you have a unique perspective that is needed to improve understanding of certain conditions, therapies and medications. That being said, you have to be your own best advocate and only opt into studies that you feel properly respect you and your voice and do not damage your well-being.

I participated in a research study with the University of Washington, and I felt so heard and understood even by just the way questions were phrased. It let me know someone had really thought through what my experience might be like even if they could not understand it completely. I think with such a basis of mutual respect you can only help the research community to gain the information and develop the tools to better interact with and treat people with lived experiences.