I am in a quandary, a real quandary.
I knew that there were issues with being a Peer. I have read the articles and essays, listened to the conversations…people talking about co-optation and exploitation, the problems of state-sponsored “recovery” models. I understood that there were conflicts between the ethos of Peer work and systems that have words like “severe and persistent mental illness’ built into them as the nuts and bolts holding the whole toxic mess together. I figured out that, in some circles, it wasn’t alright to put Peer letters after my name and in other circles it was desirable. There are a lot of identity politics and ethical tangles to navigate in Peer work, depending on where a person works and what they are expected to do within their job. For the amount that Peers are paid, it is an incredibly demanding position to occupy.
In spite of all that, being a person who really appreciates the idea of transformation and who has a lot of hope for a sensible and compassionate systemic revisioning, I thought I could work as a Peer and feel good about my job. In a lot of ways, I do. As a matter of fact, I like my job…because I love the people I work with and I love what I am able to do within the recovery education model. I can teach classes on things like The Four Agreements and creative writing. I can talk to people about hope in ways that feel like conversations, because they are conversations.
“What does it feel like to you? To me, it’s this sort of warm and bright feeling. It feels sort of like gratitude, but a little different.”
So, why do I feel so hopeless about my job lately?
The organization I work for is supposedly “recovery-oriented,” and it’s true that they have been extremely supportive in many ways. However, it’s far from perfect and I have noticed that since the center began to do medication management, things are different. It’s been a busy time at work lately, with a stressful and noisy open house for Mental Health Awareness Month, which the hospital was invited to participate in, with pamphlets about their behavioral health unit. A couple of clinicians were out last week for a training on involuntary commitment procedures.
More and more, I realize that me working there a couple of days a week is not going to magically change the mental health system and that, for the most part, people just ignore me when I talk about having questions about the role of medication management in recovery education or express concerns about violations of self-determination in things like hospitalizations and Assertive Community Treatment. I am realizing that there is very limited organizational interest in being on the leading edge of recovery and empowerment and that the vast majority of people who work for the organization are just as invested in the medical model as the American Psychiatric Association itself.
All that being said, I feel like it is incredibly important for me to keep working there, because I might be the only person who shares essays on using mindfulness to live more peaceably with voices or ways to self-advocate with prescribers to figure out if medication is helpful or harmful. People need to know those perspectives exist. Those ideas, those practices, help people.
If I wasn’t there, people might not get to read so many poems or talk quite so freely about why they love Pink Floyd so much. They might not have anyone in their lives who is willing to just see them as they are, outside of history and diagnosis, and I don’t want to take that away from people, because I know that it is vital.
Nevertheless, this morning I woke up and wanted to stay home. I wanted to give my dog a bath and clean the house. I wanted to write and work in the yard. As I got ready for the day, I noticed that I was having one of those days where I need to shake my hands, where it feels like I have bees in my wrists, as if I need to stretch something out, work it loose. For me, physical agitation is often related to cognitive dissonance or other conflict within my life, but I am not troubled when I feel like I need to move some part of me, my hands, my neck, my torso, my knees. The movement feels good. It helps me to figure out what to do.
I know, however, that when I am stressed to the point of physical agitation, I typically need to chill out and stay away from noisy places with a lot of information or I am likely to end up crying and feeling exhausted. So, having to go to workplace that requires enormous amounts of conscientious regulation in communication and reaction is not really ideal on days when my hands won’t be still.
At 7:30 am, the line at the convenience store was long and the music was blaring. I saw on the front page of the paper that cases of horse abuse are going up because people can’t afford their horses and give them away to people who don’t know how to care for them. For some reason, that made me incredibly sad.
There was a traffic jam for the second day in a row and I had to slam on my brakes suddenly twice. The day was beautiful, all bright blue with low clouds. I wanted to go home and take pictures.
By the time I got to work, I felt like flinching every time a car drove by. I wanted to pace, but I was externally still fairly composed.
I was faced with a difficult decision. Should I go into work and tell my co-workers: “Hey, I need to sway a little while I do my paperwork and, yeah, my hands are doing this for a reason. It helps me to calm down…” or should I try to fake it with a tense smile glued onto my face in a semi-dissociative coping state that may appear variably tearful or slightly shut down?
I knew that if I could just move the parts of me that need moving, then maybe they would quiet down and it turned out not to be too much of a choice.
I explained the situation to my co-workers, with a bit of light humor, trying to be clear that I was okay. I called my physical agitation “something like stimming” so they’d maybe understand that I was responding to what my body needed to do to ease stress and regulate attention.
After a half hour of quietly doing my paperwork and rocking back and forth a little, taking some deep breaths, I was totally fine. I had a very calm, productive and appropriate day of peer support and yet I received an inquiry sent to my personal email stating that “the team said you weren’t doing well” and asking whether or not “I had plans to take care of myself this weekend.” There was no recognition that I already had taken care of myself and that there was nothing much wrong to begin with. I understand that people care about me, but I don’t think that clinicians get observed, discussed, and checked in on.
Sometimes being employed as a Peer feels like I am trapped within the very ideas that I am trying to recover from. I still exist in relation to other people’s understanding of my “lived experience” and what that means to them. I have realized that it doesn’t matter at all what I term my “lived experience” to be or how I characterize my wellness or what “recovery” might mean to me. As a Peer in a state-funded setting, I will always live in the shadow of the disease model. No matter how I see myself, people still see me as having “a mental illness.”
Because of my diagnosis and the fear-based assumptions that surround it, people continue to see any little variation in my communication, attitudes, or behaviors as being a “symptom” of my “illness.” They worry about me when I am happy. They are concerned about me when I am stressed. They sometimes think the things I need to do to take care of my unique human self are signs of “decompensation.” If I have great idea, it has nothing to do with the fact that I am intelligent and inspired. My very best ideas are seen as signs of grandiosity and utterly dismissed.
Non-peer coworkers can have a bad day. They can be absent-minded or talk out-of-turn or even cry at their desks, and they are seen as just humans. As a Peer, if I do any of these things, the words, actions, or emotions are seen as a part of my “disorder,” instead of just part of who I am and what is happening within my life at any particular time. It does not matter that I do not believe that I have a disorder. There is some cruel irony in that even my well-reasoned belief that I do not have a disorder could be seen as a product of my disorder.
Given that this being-seen-as-mentally-ill phenomenon is precisely what led to the vast majority of my struggles with other human beings and that my struggles with other human beings are a huge part of what I am recovering from, I fail to see how it is good for me to work within an environment where people may view my personhood as being the result of an undesirable disorder.
Where exactly is the line between service and martyrdom?
Which side am I on?
It’s a little bit of a damned if you do, damned if you don’t situation. Double-binds will drive a person mad.
“Yes, as a matter of fact, I am mad. I’m
fucking pissed off.”
I have a friend who self-identifies with the diagnosis of schizophrenia and whom I talk with sometimes about things like double bookkeeping and how to keep a manageable grasp on consensus reality.
“You just basically have to understand that, to them, your reality isn’t real. You have to remember that they don’t know what you’re talking about, even if you think they do. Believe me, they don’t.”
We talk about how to keep ourselves safe and how to avoid alarmist hassles, what might not be such a good idea to talk with our families about. We talk about how foolish it is to tell psychiatrists anything about aliens, messages, time travelers, the ghosts of dead relatives or how you feel like you have important work to do.
“Yeah, like, what do you think they’re gonna do if you tell them that stuff? They’re gonna throw your ass in the hospital and give you a shot.”
It’s not funny, but we laugh because the world is so ugly and stupid sometimes.
“Yeah, just keep it between you and the aliens, man.”
I have been thinking a lot lately about ideas pertaining to recovery as they apply to people like me, who still fall somewhat outside of the presumably “normal” range of human experience, interests, and behavior.
However, I cannot ever not be mad…because my core beliefs and affective experience of the world make me mad.
I am mad, for example, that I cannot talk about how I experience the world or what I think about without people thinking I’m “at risk of psychosis.”
That genuinely pisses me off.
Even some allies and supporters lower their voices when I say something that, to them, makes them think I’ve perhaps not had enough sleep.
“I hope you get to take care of yourself.”
“Let me know if you want to talk.”
I do, actually, want to talk. I want to talk about what it is like to be me and I want to talk about how I experience the world and the meaning I make of it. I want to talk about how I feel and what has happened to me and what I honestly hope for.
I would like to be able to talk about such things, as it is a basic human right to be able to communicate one’s experience of life, without having to preface a topic with phrases like, “This might sound delusional, but…”
There is a certain acid in my voice with the word “delusion” – because my world is REAL and, in many ways, it’s a lot MORE REAL than most versions of consensus reality.
I would like to be able to talk about my experiences and my life in places other than a therapist’s office. I would like to be able to have coffee with friends and calmly converse about what the recent geomagnetic storm did to our brain-minds and sensitivities, or share stories about synchronicities and ghosts. I would like to be able to pause in conversation, and to say, “The strangest thought just came into my mind…”
I want to people to take me seriously, because I deserve to be taken seriously. Yet, when I talk about some of the core elements of my human existence, people just smile politely and nod. Because I am extremely sensitive, I can almost feel them thinking that I sound a little crazy and then I wonder if they also might think I am a little paranoid.
hate that the constructs of psychiatry and sanity have made it so that people can’t even talk about their lives without getting seen as crazy. I rarely use the word hate. However, what psychiatry and the associated industries of normalcy have done to the human freedom to be human is cruel and ugly in ways that are deserving of the word hate.