If I let them hear what I have to say…

“But no one knows me no one ever will
if I don’t say something, if I just lie still
Would I be that monster, scare them all away
If I let them hear what I have to say
I can’t keep quiet…”

My choir sang this song by MILCK and AG, and I love it. The website about the song says it has been adopted by choirs of “Gentle Rebels who bravely express themselves on behalf of the Misfits, the Survivors, and the Dreamers. Towards the end, it goes “Let it out now… There’ll be someone who understands.”

I’m not good at keeping quiet, and that’s why. I want the other misfits, survivors and dreamers to hear me and understand, they are not alone.

So I’m constantly coming out about being bi (and yes, it is a constant journey, the heteronormative closet is a maze). I’m also out about other parts of my identity that are sometimes hard to talk about. Like being mad.

Well, I was, until I started working in mental health, and it got unexpectedly complicated.

I used to be completely out. Well, just as most people seeing me out with my kids assume I’m straight, people also see me functioning reasonably well and assume a clean bill of sanity. But from when I started using mental health services in my late teens, I started talking openly about my experiences. As an 18-year-old I had some involvement in the Like Minds, Like Mine campaign, and I have seen the change since then as people have spoken more publicly about their experiences, and the burden of stigma has worn away a bit. However, it hasn’t worn away evenly. Some diagnoses attract much more of it. It’s also a different view across diverse cultures.

So, I was open about my struggles, and then when I was in a period of several years of wellness I continued to talk about my journey and the diagnoses I was given along the way. Then after a lot of soul searching, I decided I wanted to work in mental health. I thought I had strengths I would bring, and my past personal experience of mental distress would give me insight and empathy. My first job was as a support worker in an NGO, and the job ad framed having lived experience as a strength, and I referred to my experience in my cover letter.

I was a bit surprised once I took my first steps into a new career to realise that I had accumulated quite a bit of self-stigma, and I just hadn’t been in a situation that brought it to the surface. For my next job applications, there certainly wasn’t any indication that my experience would be seen as a strength, and in facts some of the HR/Occupational health processes seemed to imply it was a liability. Then layers began to be added. The supervisor who believed that it would be dangerous to let clients see my arms bare (with the crisscross of faint, years old scars). The person in a senior leadership position who cautioned me against talking openly about myself because of the potential negative impact on my career. I spent nearly a year in a workplace where it was very clear that it was not safe for my past to found out. I kept quiet, and I wore long sleeves even on the days when the heating was in overdrive.

But I can’t keep quiet.

I don’t want to be part of the system of stigma and silence. I was lucky enough to get a new job in a workplace that is a lot more supportive. Even then I wasn’t open from the beginning. I’d started to experience anxiety. I didn’t have role models to turn to. Everyone seemed nice, but would they really think I was OK if they knew? Slowly I took tentative steps. And as I opened up, other people shared more of themselves with me. I wasn’t alone! Having experienced my own mental health struggles didn’t mean I was too messed up to cross the threshold to the staff area. It was a huge relief. And then I had a few conversations where people shared things that they had not felt able to talk to anyone at work about, and they felt safe and supported sharing with me. That made all the anxiety about speaking out worth it.

But still, something has held me back from some specific parts of my story: Stigma. It’s still hanging around. It has become a lot easier to talk about depression, and anxiety, and lots of people can relate to those experiences to some degree. But bipolar? Borderline Personality Disorder? Psychosis? Eating disorders? Suddenly people get uncomfortable. Those conversations are hard enough to have in society generally (and I know, because I have had some of them) but my feeling is that it would be even harder in the work lunch room.

This week I had an experience that made me feel glad that I had only shared a small part of my story. I briefly felt angry about the comments that made me feel like that. Then the “I’m not good enough” well worn tracks in my brain played out again, along with the waves of shame. Then I just felt weary, and hurt, and sad, and I cried.

It should not be like this. We know that there is good evidence for peer support being helpful, but there is no framework for people who are not in peer roles/organisations. To me it’s a no brainer that one of the ways you make a service more responsive to a population (e.g. Maori, LGBTIQ people) is increasing accessibility and safety for people in that group to work in the service. Why would it be any different for people who have used mental health services?

The moments when the shame and stigma and anxiety get triggered are hard, and sometimes it feels too much. At those times, my brain starts to convince me that I really am too messed up. Every moment as a therapist that doesn’t run smoothly becomes evidence that I am fundamentally flawed. And then the moments when I get tearful around others, part of me starts to worry that other people will see right through me. They will see how messed up I am, and they will think that I shouldn’t be in their workplace.

When I hear attitudes that perpetuate stigma, it gives those negative thoughts more power.

It won’t always be like this. I’m hopeful that we will continue to wear away at the stigma. I got to go to a service users in academia symposium, and I felt so free there. I thought to myself, “this is what it would be like if I went to a queer event for the first time in my 30s!” My community of misfits and people I can be open with is slowly growing, even if we’re not ready to march under our own banner. One day I might feel that freedom in other places. But I’m impatient.

“they may see that monster, they may run away
But I have to do this, do it anyway…

Must be someone who’ll understand…

I can’t keep quiet.”

 

Photo credit MutantSpace