Authentic Advocacy, Stigma & Shame

Erin E. Casey | Where I Stand, President & Founder

“Authentic advocacy starts with me.” I carefully outlined the hand lettered script I spent hours perfecting. I drew the cursive-like letters on top of a canvas I had painted earlier that week.

Authentic advocacy starts with me.

I was in residential treatment (again) and struggling to accept it. I felt defeated. In total it lasted about five months, but in those five months, I deteriorated at a rate that surprised even myself. Upon admitting to the program, I was struggling to participate fully. My second day there a peer asked, “Are you Erin from Where I Stand?” I was completely caught off guard. I forgot that people did read this blog. I forgot that lots of people I had never met knew who I was and I forgot that my mental illnesses, my recovery, and my advocacy were all meshed together.

I found myself desperately wanting to be the person my peer knew of me online (whoever the heck that was) but I was also really really struggling and at a loss as to even convince myself that there was a light at the end of any tunnel (or even that a tunnel existed at all).

I am Erin.

I am Erin, a person, with mental health disorders.

I am Erin, a person, in recovery.

I am Erin, a person, who does mental health advocacy work.

Which Erin was I that day? I couldn’t tell you. The reality is that I am always all three of those things. All of us that do this work are. Some of us are just in denial or pretend that we’re not, just like some people with mental health disorders (who are not are not open) pretend they don’t have a disorder (at least publically). Don’t get me wrong; I’m not saying that recovery is not possible. Recovery is possible, but so is relapsing, so is struggling, so is feeling pain, so are rough patches, so are the unforeseen things that we would have never in a million years imagined. We are complex human beings living in a world that makes little to no sense sometimes.

And if we don’t challenge ourselves to lean into the discomfort and acceptance of that then our advocacy work will always fall short of reaching the people it’s intended to reach; the people that share our experience, our true (unscripted) experience. It’s true depicting and presenting our mental illness narratives as quests that have been conquered is enticing. It’s easy to fall in love with a hero and let’s face it who doesn’t love a good comeback story? But it’s not authentic. It’s not for me, and it hasn’t seemed to ring true for the 30-some advocates I’ve met in the past six years. We all have our methods for masking our struggles, and we all have grappled with what, when, how and if we should share certain parts of ourselves.

Should I be open about the fact that I’m going back to therapy?

Should I talk about this new diagnosis?

I’ve never been open about my trauma, should I?

I relapsed. I don’t want to let all those people down.

These are common, and a reflection that stigma and shame affect even those of us that openly share our stories of mental illness. We still hide parts of ourselves in the shadows of our souls wondering “If they knew ________ would they still like me? Would I still get a job? Would anyone ever marry me? Will people think I failed?” Stigma shames us all.

My second day in treatment was not the first time I was recognized as Erin, a person, who does mental health advocacy work. I grappled with that a lot. My therapist would challenge me and ask: “Why do you do this advocacy work?”

Easy. I thought.

“Because I want people to know that having a mental illness doesn’t make you weak, it doesn’t make you a bad person; it doesn’t make you less than. I want people to know that it’s okay to ask for help, it’s strong to ask for help. I want people to know that you can be both successful and have mental health condition at the same time, rather than think it’s one or the other….” I went on and on and on.

“Then show your peers that.” She stared directly into my eyes.

Easier said than done. I thought.

The next day I painted a purple canvas and set it out to dry and opened my journal and began to write “Authentic advocacy starts with me…”

Today it hangs in my office, where I work for a large hospital system doing community mental health education & advocacy. I keep it there to remind me that authentic advocacy is not about the eloquent words that come out of your mouth or even really about the contents of a narrative that you tell — but even more powerful is the living narrative that people witness through you.

Authentic advocacy starts with me.

I strive every day to show people that it is possible to be a person with mental health disorders, a person in recovery and a person that does mental health advocacy work. What that looks like? Well, that depends on the day.

My name is Erin, and This is Where I Stand.