When I first entered the professional world working in the mental health system, I never shared my lived experience of recovering from schizophrenia for a few reasons.
First, I had spent so much time investing in my recovery that I wanted to focus on my career.
I also knew there was still a stigma about having a psychiatric diagnosis, and I wanted to see how pervasive it was among practicing clinicians. I hadn’t spent enough time working in the system yet to know how people felt about people with lived experience working as clinicians and being open about their diagnosis.
So, when I first began working for a non-profit organization as a mental health clinician, I never talked about my history or recovery. It was a difficult thing to hide. While mental illness is invisible, the people who carry their diagnosis are living, breathing people. As a living, breathing person having a diagnosis, working for a mental health agency in the same geographical area that I was in treatment for my mental health disorder, it became increasingly difficult to hide my history.
There came the point when I finally realized I couldn’t hide it anymore. That moment was when I truly got to know about peer support and supposedly not being embarrassed by my diagnosis. Learning about the history of the movement allowed me to begin thinking about my recovery as a source of pride and, in turn, using it to model recovery for my fellow peers in recovery. At that moment, I disclosed my diagnosis and history of mental health issues and joined the peer network in the agency.
A few months into my career as a peer professional, the leadership in the peer network began to unravel.
My peer supervisor was clearly becoming more and more unable to supervise, was increasingly agitated, and ultimately, was openly and visibly delusional. Her relapse opened my eyes to an entirely unspoken stigma that is still rampant in the mental health system today.
In a previous article written for MIA, I wrote that a peer should not be judged by their diagnosis or by an invisible set of “symptoms” from a “disorder.” For peers labeled with certain illnesses, I had observed specific behaviors in the workplace. These behaviors were very benign expressions of healthy human oddities (e.g., incongruent tone/expressiveness or even use of language which just didn’t fit during conversations and team meetings or supervision).
I want to clarify that I am describing something riskier to client safety than idiosyncratic. In the cases I am highlighting now, the peer behaviors were not benign, superficial displays. These displays were disruptive to the agency workflow and its operations. On a more critical level, the behaviors displayed at team meetings I had observed were wildly inappropriate. Name-calling, talking over staff and talking about team members who were not in the room. There were also supervisory recommendations that would have put clients and me in unsafe situations if carried out.
You would think someone at my mental health agency, someone with a good clinical background, would have intervened and connected my supervisor to treatment. At the very least, someone could have spoken openly to my supervisor about her shift in presentation and how it might present a problem about her ability to carry out her job responsibilities.
My peer supervisor had her supervisor, the director. During my supervisor’s relapsing tenure this time, I would listen to my supervisor rant about the endless emails coming in from her supervisor trying to either “sabotage” her program or make it difficult to complete her work.
It is my understanding that more conversations were held in private about my supervisor than with my supervisor. In the end, my supervisor was utterly unaware that our peers all detected a radical shift in her mental status.
Her ultimate termination and exit from the agency were looming. One day, I got to work early and saw my supervisor sitting in her office with a cardboard box and the director.
That was the last time I heard or saw my supervisor speak somewhat coherently until her hospitalization months later when she revealed she had stopped taking her psychotropic medication. Only months later, when I visited my former supervisor on the psychiatric unit, she began to make much more sense when speaking to me.
After she left, rumors began to spread about the peer supervisor who went “crazy,” behaved bizarrely, and in turn, this created problems and a bad name for the peer network. Not only did the situation develop issues, but these problems were a direct result of her mental health diagnosis.
All of this was highly disillusioning. I had just openly” come out” as a peer, and my supervisor, a so-called expert in recovery, fell victim to her mental health disorder.
Thinking back now, the peer network in the agency could have used this as a learning lesson for us peers. Peer supervision could have included a robust discussion around relapse and the ongoing need to be mindful of what can happen to each peer with particular vulnerabilities. The agency could have also used this to develop a protocol on how to handle such a situation. But instead, there was silence.
What happened next was even more disillusioning.
A few months later, the very same situation happened again. The new peer supervisor, who replaced the supervisor who relapsed, experienced a relapse of her own. Nobody said anything. Whenever one of our peers would ask for her, we were told the same thing: “It’s been quiet, nobody has said or knows anything about what’s happening, or how she is…”
While I wasn’t looking for my ailing supervisor’s exact psychiatric or mental status, I wanted to know why, in general terms, she wasn’t at work to get a better idea of where and when I would get guidance on my cases. The agency could have said she’s out “sick” without violating HIPAA or her privacy.
However, given the bizarre, flat, confused, and vacant answers, we peers got about our supervisor’s ongoing absence, our minds began to speculate on any number of circumstances preventing her from coming into work. None of this reflected well on any of our peers or the agency. In terms of the agency’s effort to teach healthy practices in the workplace to retain peers, more education was necessary.
What’s even more ironic is that some of us knew this person from other agency programs before taking over the vacant peer position. You would think we would have a vested interest in her health. I later discovered that very few people reached out to this person in crisis, and ultimately, after her job too was terminated, there were again no learning lessons. Instead, there was a whole lot of taboo, stigma, and shame surrounding her mysterious departure.
While there are privacy issues with medical information, many of us personally knew our supervisor in the community. At the very least, perhaps a member of the peer network could have stopped by my supervisor’s apartment or knocked on her door. My supervisor’s apartment was only a few blocks from the agency’s community center. Given her apartment’s relative proximity to the community center, peers knew my supervisor’s habits and could offer input if her behaviors were different lately.
There was no discussion about the more significant implications of these seemingly reoccurring and understandable occurrences of relapse when you have a mental health disorder.
I recommend all disillusioned peers and all people working in the mental health system with a diagnosis: Have enough insight into your diagnosis to know when you are relapsing. Model health, wellness, and openness around your lived experience so if you do relapse, people can feel comfortable having an open discussion around it.
While all of us are victims of injustice, prejudice, and at risk of victimization, until we come out and fight against the taboo and tucked-away nature of mental health disorders, even peers will always feel awkward about the realities of their health publicly. In the end, back then, I was no better than the rest of the agency.
I may not have contributed to the displays and increasingly tense environment in the peer leadership. Still, I passively observed someone who is now a good friend actively decline in her connection to the world.
Today, our peers cut through any red tape in social graces or awkward feelings between us when looking at our mental health. After all, checking in on a friend or peer entails prioritizing health and attending to wellness before the politics of intra-agency affairs.
In the end, my peer’s health is more important than putting on airs and pretending everything is alright when we know this isn’t the case.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
He needs supervisors on nutrients, where they feel so good they aren’t thinking of suddenly stopping and letting their thoughts turn into jello.
Maybe the supervisor’s office was inundated with toxic mold. Dr. Mary Ackerley’s “Brain on Fire” work is worth a look. Also see Susannah Callahan’s story on her misdiagnosis as psychotic when she actually suffered with anti NDMA autoimmune encephalitis.
All who wander are not lost.
Some present psychotic to a system enamored with its own egocentric shamanism.
Neuroinflammation is no joke. Neuroleptics only complicate the problem.
Root cause mental health care could genuinely help people recover from real disease states.
It is easier, and perhaps incredibly lucrative, to assign diagnoses and corresponding pharmaceuticals.
Brain inflammation and corresponding neurobehavioural damage it causes are no joke. Why do we perpetuate it? Why not treat the underlying cause?
What about hormones? Lupus? Nutritional deficiencies? Diabetes? Teratomas? Traumatic brain injury? Emotional abuse/PTSD? Epilepsy? Methylation defects? TIAs? Hypoxia? Long haul CV? Lyme disease? Poisoning? Hypercuperemia? STDs? Thyroid disease? Frontotemporal dementia? McLeod syndrome? Biotoxin exposure?
Many people are being corralled into an inappropriate and even dangerous treatment plan. Just looking at someone and flinging diagnoses is played out in a world full of good research, real lab values, and skilled compassionate clinicians.
Assigning psychiatric diagnoses without appropriate medical, neurological and biophysical assessment is dangerous. It is also malpractice.
We owe people more than this gaslighting, humiliating, damaging system has to offer.
Calling someone crazy instead of accurately diagnosing them is morally bankrupt.
First do no harm.
Change is gonna come…
You’ve got my vote.
“Root cause mental health care could genuinely help people recover from real disease states.”
Welcome to the choir!
To be clear, I think a lot of people are targeted for having very normal and predictable responses to overwhelming stressors. But I am also convinced that an awful lot of people with genuine physical disease states are being misdiagnosed with DSM labels and mistreated with psychiatric drugs which I don’t believe have helped almost anyone over the long term while many continue to get sicker until the underlying cause is impossible to ignore. The medical community doesn’t even have the humility to make an effort to correct the medical record, they just add “Comorbid physical illness” or call it, as in my case, “mood disorder due to a general medical condition”.
I would also add that assigning psychiatric diagnoses is always wrong because the DSM is not rooted in empirical evidence. The diagnoses are voted on by committee. Psychiatric diagnoses are not discovered, they are created to medically explain socially taboo behaviors and expressions.
Maybe the “peer” supervisor position was getting really bad support from their supervisor. That’s a lot of stress to endure with no support
Mental Health problems are not only going to happen to “peer” staff – all employees should be thought of the same – just because you have a “peer” position does not mean that you are more susceptible succumbing to the stress of the job (a job which is often overworked and under appreciated) – just that the spotlight is on the “peer” staff because everyone knows about their MH issues – and a “peer” coworker struggling at work is not necessarily because of their MH issue, and it does disservice to the other “peer” staff to immediately think they’re struggling because of their MH issue
The whole idea that people can be divided into the “mentally ill” and the “normal” is brought into sharp relief by your analysis. A “normal” person who gets intimidated by his/her boss and starts feeling anxious and avoids him/her is considered to be “under stress.” A “mentally ill” person with the exact same reactions to the exact same situation is considered to be “having symptoms” or “decompensating.” It is nothing but rank prejudice and discrimination, not dissimilar in structure to white people engaging in violent acts being considered “lone wolves” or “troubled men” when black people doing the exact same thing are considered “thugs” and Muslim people doing the same thing are considered “terrorists.” This is perhaps the most important reason that “mental health” labels in general are ultimately destructive, even if a particular person doesn’t mind or appreciates their particular label. These labels are more or less arbitrary, and enable folks to engage in systematic discrimination without consequence against people who have them. In fact, these labels make such discrimination virtually invisible to most people who observe it happening. Instead of seeing it as condescending disrespect, the discriminators can frame it as “helpful concern” and the observers allow that framing unless they are quite enlightened.
yeah – I’ve seen in and experienced this myself through the various jobs I’ve had as “peer supporter” – and the funny thing I’ve noticed is how the “peer supporter” staff had that ability for introspection way more so than the clinical staff, gee maybe because we’ve actually done the hard work of introspection…
anyway, that’s why I do not share details of my story of crap-diagnosis history with my coworkers because its hard enough to be known as the “peer supporter” and seen as less “professional”, less important because I don’t have those silly letters after my name, knowing my history/diagnoses will only change the way they see me and I know they’ll just start assessing me
This is the problem with peer support. Ultimately, the people running it all are the people licking the industry’s boots. and those people should be avoided at all costs.
When I briefly dabbled in peer support, each and every one of the following things happened: one of the peer supervisors was a bully who relentlessly pushed around a depressed client to make her feel unwelcome. The reason being that this client was not on disability and therefore determined to not need help that much. The director was actively using drugs, and causing many NA sponsored to relapse and/or OD. One of my colleagues was a drug dealer who flunked many members who were in drug court out of drug court.
Dear Max, I was so pleased to read a blog by a real schizophrenic person who knows well that intolerable suffering. A person who is trying his level best to put his experiences to good use in the way he chooses. A person who is like all of us in stumbling around and coming from a place of heart. A person who has survived the most cruel of unjust illnesses. A person who speaks from his own wisdom and not anyone elses. I found your article a pleasure to read and all the petty politics you outlined, that go on tediously in any network the world over, were beautifully illuminated. As for peers falling to bits on the job, I would only say that the broken often turn out to be the most effective healers. The broken have dissolved their egotism. Which is why in many cultures of the globe, holy men and hermit women and nature communicating healers like shamans will often offer to undergo risky journeys that break them down…
for the sake of bringing herbal knowledge back the tribe.
Thankyou for being a light in the darkness of all the people you are diligently trying to be there for. With more and more cut backs and scrapping of care funds, the future issue will not be good care versus bad care…but no care anywhere whatsoever….for anyone. Some may think that is fine. But not everyone is resilient or surrounded by supportive families. And as you know, schizophrenia can be hell on Earth. Why should someone going through that hell have nobody? Not everyone is a socialite. Some folks are soft or timid by nature and have no friends whatsoever. Why should they have no care? They need care today, not five years from now. They need their life saved today.
So thankyou for being you. Keep being you. You are doing grand.
Thanks Max for sharing on this tricky topic! I will bring your article up at one of our upcoming peer support specialist group supervision meetings.
I do agree with what someone said, that confusion, stress, getting in an unhelpful state of mind, whatever you want to call it, can of course happen to people who haven’t been previously diagnosed with anything as well as those who have. And I also don’t think it’s right to think that those who have had these kinds of problems in the past – leading to the “peer” designation – are necessarily at high risk of slipping back into trouble. But trouble can happen, and when it does, it helps to have thought ahead of time about how to handle it in a healthy way.
Perhaps to be terminated from the ones who labeled you is a good thing.