I was a “revolving door patient,” trapped inside a cycle of admissions to psychiatric wards for nearly 20 years. The doctors attached numerous labels to my complex set of problems, including: Anorexia Nervosa, Borderline Personality Disorder, Depression, Schizophrenia, Organic Psychotic Disorder (Undefined): F06.9. I did not understand my diagnoses; I did not think I was unwell. In my (obscure, violent, unfathomable) mind, I was simply a bad person, with voices shouting obscenities at me: “DIE, DIE, DIE!”
I would paint and draw all day (and night) when incarcerated on these wards. My art became my sanctuary: a means of expression, a home for all my torment, which became lessened and easier to bear when I put it down on paper.
At one tribunal, when I was trying to fight for my right to make decisions about my life, one medic said: “She should be locked up for life!” Those words are carved into me. I will never forget.
Many years later, I found myself admitted to an eating disorders ward in Oxford, where I experienced a very different kind of treatment. The model of care was inclusive, holistic, and helped all the different parts of my illness. I was able to use my art to feed and sustain my recovery.
Following this admission, I developed skills and strategies to help me build a new, recovered life – against all odds. I was inspired and committed: proof that it is possible to recover from mental illness, no matter how long or severe. I decided that I needed to become a “peer support worker,” to offer hope and help other patients lost in the system to get out and get well.
This idea – to be a peer-support worker – quickly became my vocation. I was determined that this role would be the starting point of a highly meaningful, worthwhile career. I would finally make something good out of all the bad things I had experienced during my illness.
The following account is taken from the live notes I took whilst training to be a peer-support worker.
. . . .
During my training, I am placed in the acute ward of a local hospital. I work here, with the intention to pick up the role (peer support worker) by shadowing existing staff and spending time with patients. I am given lots of badges, keys, and an alarm bell with a tag I can pull when I find a patient (or myself) at crisis point.
The ward is chaos. Lots of noise. I empathise with many of the patients; this agitated environment recalls my own dark epoch of being locked up in acute wards.
The first task of the day is to attend “team meeting,” where the hallowed consultant swans in and talks about patients as blocks of symptoms and diagnoses. Patients require more medication (sedatives) or electroconvulsive therapy (ECT, electric shocks to the brain). The latest dramas in the ward are presented: absconding, assault, disclosures of sexual abuse.
I am soon exhausted by the intensity of demand faced in the acute ward. No one has a clue what I’m supposed to be doing, least of all me. Patients shout obscenities at me. Others deeply trouble me, with their perplexed, petrified catatonia, gazing into their own, dark abyss whilst they pinch their nose, as though olfactory hallucinations make it impossible to breathe.
I am helpless. I can’t help them: They are not aware of any other living being or anything “real” at all. I wonder if the patients’ reality is more real than the one that clinicians superimpose onto them.
I am asked to work with a patient, K., who has severe mental illness, is deaf, and also has learning difficulties. I try to communicate and help this patient get to the dining room, eat lunch. Impossible, impenetrable. I wonder how to apply the “recovery principles” that I am supposed to be activating from my peer-support worker training in this context.
I am baffled.
Making it up as I go along, I sit down and have lunch with K. She can hardly manage. It is difficult to connect, let alone engage with K. However, I make eye contact. She gestures toward me, asking for yoghurt. When I bring the yoghurt, she smiles. Upon tasting it, K. says it is “delish” (it sounds like). A brief moment of clarity. Soon this passes, and it is hard to find out what K. wants to do, or where she wants to go, after lunch. Even harder to stand up. I wonder what recovery means for a patient like K. Enjoying the taste of an apricot-flavoured yoghurt, and communicating this pleasure, is a sign of huge progress, for now.
I support K. to walk to the medication room, sit on the chair, take her medication, stand up, walk to her room, brush her teeth. These small tasks are crucial in her care. I use my lived experience to bridge the gap between the patient and the care system. In this way, I am able to meet the patients on a level playing field, on their own terms. Here, I support the patient to make their own recovery (whatever that means).
I suppose this is what my job is. But I am given conflicting orders (or lack of orders, “just go and be with patients”), repeatedly told off for overstepping my mark, when no one knows what my “mark” is. Terrified I’m doing the wrong thing, but no one knows what “thing” I should be doing.
At best, I’m “untrained,” “a volunteer.”
I am upset that I must harden myself, tone down my sensitivity. How can I be a brick wall when patients call me a “C U Next Tuesday,” or fire words at me so aggressively. It’s not supposed to affect me, but I am only human, so of course it does.
Other staff members joke about “difficult patients,” running around the ward to avert the latest crisis, or breaking ligatures. Tallying, competing – how many have you released? They tell me they put up a façade, don’t reveal to patients their own lived experiences of mental distress. They do not break cover; keep cool, calm, and collected. Survival under pressure.
I can’t do that, since my role is to open my inner self, to connect with patients, to provide empathy and compassion through our mutual sufferings.
I am co-opted into encouraging a patient to agree to have ECT. This patient is very resistant (with good reason). The doctors are at their wits’ end; they don’t know what else to do with her. ECT is the last resort. I agree to speak to the patient, referring to my lived experience of having ECT. I find myself convincing the patient to have something that I would never recommend anyone ever to have. I had a terrible experience of ECT, but here I am telling a patient that it is a good idea. Ethically remorseless, fundamentally wrong.
Further heartbreaking moments. T. bangs against the staff room door, with her walking frame. Louder and louder! A staff member tells me in her urgent, commanding voice to “go out and calm her down!” Presuming she knows more than I do, so I obey. I step out of the staff room and try to talk with T. She takes a sharp inward breath, bellows, and attacks me with the frame.
I’m not used to people shouting at me, I’m not used to people saying such horrible things. I am scared, very unsure. What the hell am I supposed to do? T. repeats her booming, antagonistic mantra to me, at me, inside me. Piercing me.
Her uninterruptable, hostile monologue, on autocue (here toned down):
“Where is PC Tooth? When is he going to my flat? Do you know how bad I feel about this? I am so anxious. I’m supposed to be in your ‘care’? You don’t know what you are doing. You are not doing enough. Don’t you dare be so patronising! You are not doing a good job! What sort of ‘care’ is this? Where is PC Tooth? As Maria Carey would say: ‘That don’t impress me much.’”
T. has a point. But I am powerless to help her. Silenced, I don’t know what to do. The ward manager comes out and whisks me away. “Lorna,” she says. “Why are you out here? You are not trained to deal with patients like T.! Come back in the staff room at once!”
I am given a swift bollocking. Another blow. I try to inform the ward manager that I was told to go out and “deal with” T. Then there is an argument among staff about what I am or am not supposed to do, am or am not trained to do. It is like a cage-fighting contest. With me at the centre. Oh, dear. What do I do now?
Meanwhile, I am peering out of the window in the staff office. Another patient, S., walks up to the glass and stares at me. Their stare pierces me. I am taken back to a past I have tried to forget.
I am disturbed by the experience, by the catastrophic sense of shame recalled, made present – my present.
I want to walk away, but I’m trapped.
A part of me is broken. Must I be preventative? Must I harden my interior to protect myself? Harden myself from all these desperately unwell patients?
I’m quite sad about this; that’s the last thing I want to do. My sensitivity, my empathy, my insight, my people skills are my greatest assets. But in an environment like an acute ward, these assets are continually battered.
Within this system, the acute ward is a zoo. Patients are not treated like people, but like wild, incoherent, unusual, incomprehensible, strange, unknown, ludicrous, dirty animals – trapped behind bars against their will. People follow and stare at the animals, prod them, feed them, medicate them. The result is a stupefying mishmash of uproar, sedation, confusion, and chaos. This is a demeaning, horrifying situation. It shouldn’t be like this.
Working here is like fighting a boxing match in the jungle, blindfolded, with my legs and arms tied together. Opponents punch me repeatedly from numerous directions. I’m battered. I don’t know where I’m going, or what I’m supposed to be doing.
Am I going to win this fight? Can I find a way to take the blindfold off? Is it possible to see?
But I don’t want to fight, anyway. What am I doing here?
The staff put up a facade to protect themselves. They hide their inner selves, to keep themselves safe. So when a difficult scenario occurs, the staff member can just raise the bar and not let it affect them.
But my job as a peer support worker is to share my experiences about my deeper self, to reveal, not to hide or mask. I have no façade or protection (definitively).
How do I protect myself, whilst also remaining open? Being a peer support worker leaves me extremely vulnerable in the acute ward environment.
These patients need individualised care; they need hope and a plan for recovery that is attainable and unique – according to each patient’s needs and wishes. The acute ward is characteristically chaotic; it’s where patients are “put” when they are severely unsafe. Trying to contain patients at the acute end of their illnesses is extremely difficult.
In my brief stint at the acute ward, I realise that the notion of the peer support worker in this context is deeply flawed. It’s a brilliant idea, and very much needed, for many reasons. But it is in effect a cheap and potentially exploitative “solution” by the UK’s National Health Service, which involves me being exposed and vulnerable to the very thing I must (for the sake of my life and health) keep away from: mental illness.
COVID-19 leaves the ward in an even more toxic situation. Patients are discharged too early, soon relapse, and are re-admitted. A number of patients and staff become infected. The pandemic pandemonium meets bedlam: It cannot get any worse.
. . . .
I left this placement with the acute sensation that there was somehow a gross fault in the system. I went on to another job as a peer support worker with the same team who had helped me find my recovery. This was meaningful work, but tarnished by the immense pressures that frontline healthcare workers face: a huge increase in demand, patients presenting with extreme severity of their illness versus insufficient staffing, money, and appropriate facilities. Impossible.
Meanwhile, as the lowly peer support worker, I was “the most junior member of staff.” I was overwhelmed by the size of the problems faced by healthcare in the UK. I was objectified as someone who had been very ill (if then recovered), who could “relate” to the patients. But I did not want my life to be about illness.
Soon enough, another job opportunity arose (in research), which I grabbed. So I left the NHS, with the sense that there was an awful lot more to do, before which I felt utterly powerless, inept.
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.
Goddamn what an excellent article, and perfect expose of the “peer” scam!
Psychiatry is a branch of law enforcement, not medicine. And “peers” serve the same role as “trustees” in the prison system (or “overseers” during slavery). You were turned into a pawn to do the system’s dirty work under the guise that you were to be helping others navigate the bullshit. However it can’t be “navigated,” it has to be abandoned. I’m glad you walked away — just hope that “research” isn’t “mental health” research, which is the same scam in different clothing.
Also Lorna — I would be totally remiss not to tell you about our recently passed comrade Stephen Gilbert, who worked for years as a “peer” at Arkansas State Hospital. He constantly exposed the bankruptcy of the “peer ” concept in the pages of MIA at night as he worked there by day, and also joined our budding anti-psychiatry organization and worked to defeat psychiatry till shortly before his death.
Please set some time aside to read some of what Stephen had to say. I am including this link to his MIA tribute: https://www.madinamerica.com/2019/12/tribute-to-stephen-gilbert/
More important, read some of what Stephen had to say personally in his voluminous MIA comment history. I suspect you’ll feel like he’s speaking directly to you at times:
Wearing my new emerald green migraine shades so forgive the typos and wincing rush to return to gothic darkness…but it sounds like you were thrown under a bus. The staff should have nurtured your passion to make a difference, not pulverized it. Consider the tradition of apprentices. An apprentice was helped to flourish and grow in confidence and this was made possible by the building up of a relationship to the wiser overseer. But what often happens nowadays is a stressed out team of many personalities all bickering and competing means you dizzily cannot form a relationship. The staff are blind to why you might need one since they dont feel they need one, but that is because THEY ALL KNOW EACHOTHER.
Before there can be an apprentice there has to be a master and there are none to be found here. As Dylan once sang, “I’ve got nothing Ma to live up to.”
Lorna, you’re the penultimate, the quintessential peer counselor. You truly embody a critical myriad of survival skills which have been taught to you in your own recovery, and which you’re trying desperately to pass on to others. I say, “Bravo,” and I wish you all the good luck in the world with this.
I’ve discovered that one of the most important survival skills of all to have, is the capability for taking reasonable risks in my life. Mind you I said reasonable ones, not wild reckless ones. Before I enrolled in our state’s Division of Vocational Rehabilitation following my hospitalizations, I was at a pitiful loss in my awareness of the need for being able to take risks. DVR enabled me to take them and after this, I came to see how you can actually even make a philosophy of life out of your newfound ability to stick your neck out.
Early on in your article you talk about how, other than your learned knowledge of recovery principles, you were at a loss as to how to help people on the acute psychosis ward. Thusly, you were forced to, “wing it,” when working with people.
Congratulations, Lorna. That’s exactly what I’m talking about up above.
I suspect you didn’t have any of those alleged diagnoses you got when you were a patient, but maybe some kind of cerebral allergy that might have been relieved by the special diet you were put on in England, in which junk food levels were low or nonexistent. You can probably see similar things in some of the patients you sit for. Look for them, as it will give you something to do and also give you the outside chance to do things for the food sensitive “psychiatric” patients. In the meantime, stay away from caffeine, as it’s likely to increase your emotional lability (in addition to the institutional junk food).
I should also mention how unstable blood sugar can also induce “mental” symptoms that probably won’t be caught by many therapists- also a reason to avoid refined carbs, sweets, caffeine and the like, sometimes hard to do in Britain with its regular 4PM tea and sugary cookies’ ritual (aka carbs, sucrose and caffeine).
The way I see it is this.
There is a “mental ward”. Within those walls are people, and as you say, people who are treated like caged animals.
My shadenfreude is this. I know for a fact that even the people that work there, and dole out the drugs, are prisoners. They will have to come back tomorrow, and for 40 years until retirement. So it is very difficult to tell a shrink from a patient.
It is good you recognized your survival skills. The other worker bees rely more on the money aspect.
This article highlights the problem with the mental health system co-opting the peer movement and creating the position of ‘peer support workers’ –
The problem is not the make-up of the peer support role or the peer movement itself – the problem is the mental health system tokenizing this role and throwing peer supporters in dangerous situations like the one stated in the article with clinical-based peer support training (but in the article context I don’t know what their training was like) and no support or supervision from peers and not clinical people.
With real support and training based in the “peer” movement, peer supporters can work in “acute” hositpal settings and should definitely be present there
“But in the article context I don’t know what their training was like”. Think monkey see, monkey do and you’ll be right on the money (monkey?).
Yes. OH frequently has vented this to me in our correspondence.
Good to see you back Rachel, hopefully certain people will have more respect for you this time around. Not sure what you’re saying I have bee “venting” about. But I just noticed this (with which I heartily disagree):
With real support and training based in the “peer” movement, peer supporters can work in “acute” hositpal settings and should definitely be present there
No, those who realize that psychiatry is a criminal enterprise should refuse to lend it legitimacy with their presence. And the “hospitals” should be razed.
Yes agree with “No, those who realize that psychiatry is a criminal enterprise should refuse to lend it legitimacy with their presence. And the “hospitals” should be razed.”
Just like every system built on torture and death, psychiatry is inherently flawed/evil
What I mean is while things are the way they are (psychiatry trying to and in some places successfully co-opting “peers”)I think its important for “peers” to be present everywhere, and try to fight the system from within, although the longer I do that the more frustrated I get. But it won’t work if the “peer support” training and supervisor is through the medical/clinical model.
Once there is any kind of “training” required to be a “peer” it sets up a power relationship of “expert” (or “baby expert’) vs. “regular person.” Which negates the meaning of “peer.” There are no experts that can teach us to be human; we all live in a sea of alienation and need to help each other reclaim our humanity.
There is no “peer movement.” “Peerdom” was created to function as an adjunct of psychiatry and perpetuate the psychiatric mentality, and as such disempowers those it purports to help. It also encourages survivors to aspire to be baby shrinks, rather than throwing the whole system out with the bath water. Look up the word “peer.” If someone is your peer they shouldn’t need to constantly point that out to you, or be paid for being such — why aren’t YOU getting paid too?
Well, if one is a real peer and knows what they’re doing, they’d be likely to be treated with fear and suspicion until they’re canned by their overseeing professionals, no matter what the degree of improvement was ever found in their subjects. I remember the underlying terror in my superiors’ eyes when they discovered I was likely responsible for a couple of their subjects graduating from an alcohol/drug treatment program when they weren’t supposed to (well, I probably was the perpetrator) after they’re “diagnoses” were that the pair were hopeless cases and bound to stay that way. Although they wanted to know how I did it, I became so peeved I didn’t tell them I simply used niacinamide, 3g/day for both of them (I worked PM shifts, so it was easy to secretly treat them). I was also worried they’d try to keep me from getting unemployment because I was “medicating” residents.
Lorna, thank you for sharing this beautifully written, honest piece. It is always invaluable when we shine a light on the reality of inpatient hospital stays.
Oldhead, let me interject here for a second if I may. Peer counseling is not something concocted by the National Institute of Mental Health exclusively for the purpose of coopting the mental patients’ movement.
In Judi Chamberlin’s book, On Our Own, she talks about encountering a patient-run self-help group in Vancouver, British Columbia, (Canada,) with which she credits her recovery. The clever way in which Judi crafted this passage in the book shines a light on the multi-dimensional empowerment which results when one patient comes to the aid of another. This is what makes that book so compelling, and turns it into a manifesto.
Was this self help group run by a shrink overseer? Or nurses?
He’s talking about the Vancouver Emotional Emergencies Center, which both Judi and Ted Chabasinski were involved with. There were no shrinks to my knowledge. Of course Ted could shed more light on this than I.
Judi was a friend of mine, and I was there when she was writing On Our Own. She never meant for her use of the word “peer” to be co-opted by psychiatry the way it has. The so-called “peer movement” is a new iteration of the “mental health consumer movement,” which was the first effort to co-opt the anti-psychiatry/mental patients liberation movement. In her younger (and more radical) days Judi spoke often of “consciousness raising,” not “peer counseling.”
Unfortunately Judi did get somewhat entangled with the reactionary “Alternatives” conferences and other system-friendly enterprises as she got older — a tendency we all need to recognize in ourselves as we age, and try to nip in the bud. Bonnie Burstow was the first to bring my attention to this, which I disputed at the time. But to refer to things that are natural, good and healthy as “alternatives to psychiatry” gives psychiatry way too much legitimacy, i.e. as the standard against which everything else should be measured, rather than something to avoid at all costs.
Oldhead as you know, I’m always compelled to give you the credit you deserve for your superb marksmanship.
On the surface, quibbling over semantics is just a waste of time. It really doesn’t matter whether we say, “peer counseling,” or, “consciousness raising.” But in the end what we say really does make a difference after all. You’re correct, Oldhead, when you point out that the term, “peer counseling,” is more closely associated with N.I.M.H.’s effort to coopt the mental patients’ movement. As such, it truly is an obfuscation.
For one, consciousness-raising does not require training, even if the group has a facilitator. It doesn’t even require a group. But c-r was not considered a solution, or “alternative therapy.”
Lorna glad you got out thank you for telling your experiences.
Oldhead, you’re the, “Karl Rove,” of antipsychiatry!
If that’s a compliment could you find a better comparison? but thanks, I guess…
You said: “But in the end what we say really does make a difference after all.”
I know you are trying to praise Oldhead, but I sincerely hope he does not take a comparison to Karl Rove as some type of compliment.
I guess I’ve been caught with my pants down. I wasn’t sure whether or not you all would know who Karl Rove is.
Oh, I think they know very well who Karl Rove is. I just don’t think they consider him a person they’d like to be compared to. More somebody they’d wish to NOT be like at all.
Yes Steve. that is like comparing Oldhead to Joseph Goebbels. And that would most certainly NOT be a flattering comparison.
Richard Lewis, you don’t have to approve or disapprove of what I say to somebody else. My previous post wasn’t addressed to you in the first place. I, personally, would be thoroughly honored if somebody compared me to Karl Rove.