The 'demanding' patient?

For the service user there is only one thing worse than the sinking feeling you get when you realise that others are saying they hear what you say, but are looking upon you as ‘mad’; and that’s the moment when you express suicidal thoughts and the worker stops listening, at the same time as insisting on not leaving your side - until you stop sharing those thoughts!

In my twenty year ‘career’ as a psychiatric patient it has been impossible to separate my changing or persisting notion of ‘self’ or personality, and the problems I may have, from the real social experience of being part of the mental health care ‘system’. And some of my peers will go so far as to state that it was the experience of hospitalisation itself that caused what others subsequently labelled a mental illness.

All I ‘know’ as a client (diagnosed as Bipolar) is that over the years I have met other clients, who after getting to know them a little will mention that at some point they have been given the label of a Personality Disorder; that it almost always came after having been given other diagnostic labels; that in terms of discrimination and stigmatisation it is the ‘shitty-ist’ label you can give someone; and that throughout my life I have satisfied many of the criteria for various types of personality disorder, though no one has given me that label - yet! My experience of mental health care, has meant that when I ‘see’ what others call aspects of a personality disorder, it is almost always in the context of some form of confinement; of people forced to live and work together who would, given a free choice, choose not to be there - workers, clients and carers. But the explanations offered by others for those behaviours, displayed in the present moment by people who have often experienced mental health care for many years, centre around traumatising childhoods - a failure to emotionally attach, dodgy learning, and the fixing of an identity at a young age with little change thought possible, until in middle-age they appear better able to cope.

Being on a ward for twenty-four hours a day, means the influence of clients on each other is much greater than that of staff. You learn to communicate very rapidly because you have no choice. What remains incomprehensible speech and bizarre behaviour to staff, becomes more and more understandable amongst peers. What looks like nonsensical behaviour to the outsider who spends most of their time away from the ward begins to make sense to those within it. Equally amongst new workers, what might be called a ‘myth of inarticulacy’ grows up. There is no sense to the client’s world, when viewed by those who are confident that they are ‘normal’ and living in the ‘real world’, therefore the obligation remains with the client to fit-in by making themselves understandable - staff come to have a an ethnocentric outlook. And the only way out for the client is to start ‘performing’ for the staff, you learn what it takes to get what you want, you do your best to manipulate the situation you find yourself in - until in middle-age you get so good at it, it looks like improvement and a change in personality. The only problem is, by then you’re a mental health ‘junkie’ and have to resort to such methods as writing your way out of it!

She said she had been watching me since I’d come down from the secure ward three days before. Between supplying me with cigarettes, she told me how I’d changed and was getting better - no nurse was ever quiet that observant! She described me to myself and gave insight. That was sixteen years ago. We met on and off in all sorts of mental health type locations over the years. When she was agitated (she would have said anxious) she’d seek me out repeatedly - maybe half a dozen times an hour. And perhaps ten times in as many years, we had in essence the same conversation about depression, suicidal thoughts and actions. By the end she had been in ‘the system’ forty years, me a mere twenty - she was the consultant, I just the junior doctor! Others, sometimes found our talk ‘inappropriate’, how naive - we were the ones in the moment, in reality and staring life in the face.

She described herself as Bipolar, but had a reputation for being terribly demanding and dependant. To me what she was doing was forever testing everyone. All those decades of receiving care but never any long term relief, had left her profoundly distrustful of workers and sometimes other clients. Thirty-five years of lithium hadn’t done much - now her kidney’s were packing-up. There had been repeated suicide attempts from which she’d achieved only greater competence. But then so too had those around her, leading to a kind of ‘arms race’: ‘My husband’s put a lock on the medicine cabinet’. A cascade of questions:

‘You know what it’s like don’t you Nick’
‘Yes!’
‘You’ve been there haven’t you Nick’
‘Yes!’

Always testing, always eyeball to eyeball, but acutely observant too when I was trying to explain something to others about the way it was - me knowing I’d better get it right or she’d lose her trust in me. What all the experience and mistrust had meant was that she valued honesty above all else. Physically she looked terribly slow, mentally she was quick, subtly rewording again and again what might seem like the same question but wasn’t, she tried to trip you up, because she had learnt others could not to be trusted. The answer was to concentrate on the question, and respond straightaway with the honest answer, however inappropriate or absurd it might sound! Only then did she get consistency, reliability. You had to be focused on her, not caring if you looked crazy to those around you. Workers, trying always to be supportive and consistent in their care therefore came over as the opposite, because they weren’t actually listening to the precise question. She didn’t care what the response was as long as it was honest.

It had become our routine that I was the one who always finally walked away. The last time we met we were together with others for several hours; me frustrated, wanting the workers out the way. But our personal relationship had a good ending. Knowing I was leaving she stood up, came over and brought it all down to four words;

‘Will I be alright?’
‘I don’t know’

I turned and left. She didn’t mean will I get better, she meant will I get to where I want to go. As usual when trying to tell workers that something else should be done I get back ‘client confidentiality’ and ‘inappropriateness’ and told my view is just my own and no more valid than anyone else’s. A couple of days later she died. Almost a week later I am told she has killed herself, whilst workers around me have known for days. It was ever thus.

Depressive, manic, rapid cycling, avoidant, dependant, borderline, obsessive? Sure, all of them at various times, persistently and enduringly over forty odd years; learnt, played-out and inseparable from the relationships made with those who make up the mental health system.

… but this is getting to be too much of a reconstruction, with the benefit of hindsight - and as we know every act of remembering involves a degree of reinterpretation.

Clients may not be being ‘demanding’ but ‘testing’ - behaviour firmly grounded in their previous experience of workers rather than imagined consistencies in a ‘personality’ glimpsed by others. Equally a major problem may be workers, believing they are giving consistency of care, but not being quick enough to follow changing emotional states, ending up giving rapidly changing inconsistent responses!