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.