Writing about me without me.

What is written about us in hospital records? Whose version is the truth? Can we find ways to co-create narratives about our lives?

I recently watched Madness Made Me, the short online film about Mary O’Hagan’s story. It got me thinking about the power of words and those who use them.

I have long been inspired by Mary O’Hagan. I still remember the first time I saw her speak at a conference, and her strength stretched out to me across the auditorium. I wanted to be like her. A survivor, speaking her words with intelligence and humour, unashamed and fighting for something better.

Mary was like a Super-Consumer-Action-Figure-Hero, living large.

The short film is based on Mary’s book by the same title, and it contrasts her personal journal with her official hospital records. The difference is stark and sad.

The contrast between personal experience and official records resonates with me because I have been writing my own memoir for over two years now. I cannot tell you how many times I have stopped to think that I, too, should access my psychiatric hospital records. While I want to tell my story from my own perspective, these records will have information in them that I should at least read. I have got the Freedom of Information forms from the hospital. I have even put my name in the first field.

And yet, I put off completing the forms.

To read or not to read?

Accessing psychiatric records is a scary thing. I know, without any doubt, that reading this big pile of paper, written about me but without me, will be a really hard thing to do.

To start with, the hospital can choose to redact parts of my files if they want to. That will make me angry. Like, really angry. To know that there is information about me that others have decided to keep from me. If this happens I know that I’ll feel the sting of judgement and paternalism and control.

I also know that reading my file will feel hurtful.

For all of the billions of dollars that are spent to investigate the science of mental health, in the real world mental health practice comes down to one human being’s subjective opinion of another. Given what so much of my hospital experience was like, I know that at least some of my notes will make me feel objectified, criticised and misunderstood. I know that I will disagree with conclusions in my file because I know that the treatments that were given, and sometimes forced upon me, never really worked, and sometimes made me worse. I know that some of the most important things just won’t be there at all.

I already know about one entry in my hospital files that is particularly outrageous.

Back in about 2002, during a session in an outpatient clinic, the clinician asked me about my delusional thinking. I didn’t know what she meant, and she pointed out an entry in my hospital record where I had told the consultant psychiatrist about my art exhibition of business cards, written in blood, and displayed in the foyer of the Australian Ballet. This clearly delusional idea of mine was partly why my medication had been increased.

It was hard to know whether to scream or guffaw.

That exhibition was no delusion, it was absolutely real. Sure, it was weird and creepy and probably didn’t indicate the sanest of minds, but it certainly wasn’t a delusion. I offered to bring in photographs of the exhibition to show her. I’m not delusional, I told her, but that doctor is a dickhead.

My apparently delusional art exhibition.

Ever since I have wondered how many times the so-called professionals have listened to strange stories about my life and just assumed they were delusions rather than facts. They never bothered to check, just wrote down their opinions as though they were facts.

That psychiatrist only had to make one phone call to the Australian Ballet and ask if they had a super weird exhibition in their foyer. I am quite sure the receptionist would have said, Yes! Can you get rid of it for us?

So, I can’t help but wonder how many more stories like this wait to be uncovered in my file. Assumptions and judgements that will piss me off.

I tell myself that I don’t really need to read these hurtful things. But I want to and I think I need to. My writing is an exploration of my own truth, and any decent explorer should collect all the data, even the truth of others, and weigh it up. It seems like good writing practice. I can choose to reject information that feels untrue.

But still, it will stick to me in some uncomfortable way. It feels like asking for trouble.

The problem with memory, memoir and madness.

The word ‘memoir’ originates with the Latin word memoria, meaning memory. But memory is a tricky subject, particularly when it comes to memoir.

In fact, memory is a bit tricky for most people. I once watched a television reunion programme where Stephen Fry and Hugh Laurie reflected on their years of work together. Each had completely different memories of the first time they met, including where it was and what they said. It was hysterical but so familiar.

So another reason I want to read my psychiatric files is to help fill gaps in my memory.

While much of my history in psychiatry is unforgettable, many of my memories are clumped together, like random threads tangled into the corner of a sewing basket. There are months of my life that are blank, and sometimes friends and family tell me stories of which I have no memory at all. This is always disconcerting and it can be hard to know whether to them believe them or not.

I know that I mix up some of my hospital admissions with each other. I can’t always remember how I ended up in hospital. I have my journals of course, but in my typically non-compliant and unconventional manner, I didn’t always date my entries. I have this hope that my hospital files will help to fill in some of the gaps, or at least partly unravel some of the individual threads of my history.

I suspect there are several reasons why I have these memory gaps—but ultimately they are only guesses. One reason could be the effect of the strong emotions associated with my madness, although the research about memory is a bit contradictory about whether strong emotions improve memory or make it harder to remember. It’s both, I guess.

Another reason is sure to be the effect of medication. I had long periods of being on very large doses of sedating drugs.

Being in my mid-forties probably doesn’t help either. Most days I feel like I am just waiting for another bit of my mind or body to wither up and drop off; each birthday brings with it a new chronic problem and associated, expensive medical specialist. I reckon some of my memories have just aged off, along with my joints.

Of course, we all lose some memories over the passage of time, particularly when we suppress rather than verbalise them. For my most shameful experiences, such as the abduction and rape, I did not talk to others for many years, so I didn’t get that opportunity to revisit the memories over and over through retelling. All I had were painful flashbacks of pivotal moments.

My memory was also affected by multiple sessions of Electro Convulsive Therapy (ECT), and while different people have helped me to reconstruct events, the memories themselves have not always returned.

The particularly difficult problem with ECT is that I can never know how severe its impact was in terms of how many memories I lost, because they are just gone. Finding these memories is like trying to work out what the last residents of your home stored in a cupboard, just by staring at the space. It doesn’t work. I still struggle to reconcile myself with what feels like a theft of myself.

Which words are true?

So accessing my hospital files feels sensible to help reconstruct some memories. But I am fearful that I may find challenges to some of what I believe to be true.

Last year I was confronted with this very challenge while reading an old journal that had remained closed for over a decade.

For many years now I have spoken about the damage that was done to me by receiving involuntary ECT. I have written about this, and talked about it in public. I have described my experience of ECT as a kind of mind rape, as a violation of my memories that even now has consequences. This still feels true.

And yet, one afternoon, as I flipped through these old journal pages of heart-breaking, scrawling entries, I found this entry that shows that I was given time to think about getting ECT:

And over the page I found that I had made a decision to get it:

And then I found an entry just after I had received the ECT. It explicitly says that I agreed to have this done to me:

WHAT!? I was shocked. Really shocked. I don’t remember agreeing to this. I don’t remember any such conversation. I don’t remember writing any of this in my journal. But of course, I probably wouldn’t remember what happened immediately around my first shock treatment. But here it was, in my own words. I agreed to get ECT. It was not involuntary.

Discovering that my memory was untrue was a huge blow. I began to question more of my memories. I felt like a fraud. And how could I trust myself? What right did I have to write or speak about my life now?

After the initial shock wore off, I talked to others about what I had found, and I began to see it differently.

I began to think about the nature of informed consent and how this really works, especially when we are in states of extreme distress. And nothing is really voluntary in a psychiatric ward (more about this another day).

When I think about how much I wanted to die at the time, I wonder whether I liked the idea of the risk of the anaesthetic, or the possibility of losing memories or myself. I may have seen it as a type of self-harm. I wonder how much I cared about anything, given my state of mind.

I wonder what it was that caused me to agree. I wonder if all the consequences were explained to me. I wonder if I understood any explanations. But I just don’t know. And even if, or when, I read my hospital record, I still won’t be able to know what I was thinking at the time. It’s just gone.

So I guess I worry that reading my files will lead to more discoveries like this.

It’s confronting stuff. But then, if my story is about the truth, then I must forge ahead and deal with whatever I find. And maybe conflicts between my memory and the records written about me will actually be useful, and interesting, and worth exploring. And truth is ultimately subjective anyway, no matter who tells it.

Imagine if no-one had to go through this.

When I became a mental health worker, my dislike and distrust of records continued.

Just the term case files made me shudder. Files about cases instead of about people. The only use of ‘case’ that I dislike more than case files is case manager. I often joke that it really means baggage handler. But really, who wants to be thought of as a case? And who wants to be managed? It’s awful. But I digress.

In my first few months as a community support worker I just didn’t put any notes into anyone’s files. It felt utterly disrespectful. I’d done some training, but I didn’t like the idea of recording my observations of people. And I certainly didn’t like writing about people without them. So I just didn’t do it.

You can guess what happened. A random internal audit by my manager, followed by a thoroughly unpleasant meeting.

I adored my manager. Still do. Her name was Krishna, and she was an absolute inspiration. So when she told me that she was disappointed in me, it was devastating. I had to cancel a week’s worth of appointments, go and sit in a separate office, and get all my files up to date. Krishna came in to check on me a few times a day, and along the way she gave me some helpful advice so that the records felt more respectful and in line with my values.

That was a tough week. I am sure this is a challenge that confronts many peer workers even today.

Years later I was managing a program myself: our new hearing voices network, called Voices Vic. When we began working with individual people, I got the opportunity, for the first time, to think about how we could keep records in a way that met our legal and professional obligations, while still being as respectful and transparent as possible.

I am proud of what we developed together in that team. We decided that no records would ever be secret: every entry was completed with the person. People could write their own entry along with the worker, or jointly create the file entry, or at least listen as the worker talked through what they were writing.

We decided that no-one would ever need to ask for access to their file because they would have their own file from the first day.

We created two files for each person in the first appointment: one for the person and one for us. Everything went into both files. We began to find that files could be so much more than just a legal record for the organisation and a memory prompt for the worker. They began to be a useful tool for the person and their recovery work.

People said they found it easier to remember their sessions because they had their file. They could add their own notes to it, and read it between sessions. It became like a personal journal, but co-created.

We had a fair bit of discussion about the challenges of co-created and completely shared files. There was some concern by one peer worker about what to do if they felt they needed to write something that the person may not like reading. But we agreed that it was pointless to write about something without there being a discussion as well. And there was always the space for the worker and the person to write that they disagreed about anything. Nothing about us with us was our motto, and it worked.

I like to think that one day psychiatric hospitals might have co-created records too. That we might get our own copies of records along the way, just like at Voices Vic, so that people like me don’t find themselves in situations like this. That we can add information to our records. That people no longer make decisions about us without us. But we’re a long way from that happening. Large hospital bureaucracies would shudder at the very thought of this. Hospital lawyers would probably have seizures (not the ECT type). Shame.

And, for me right now, the conundrum about accessing my hospital records remains.

The freedom of information application forms are still sitting in a wrinkled cardboard file off to the side of my desk, just like they have been for about two years now.

I’ll let you know how I go.

Want to implement co-created notes in your service?

Check out my flyer on co-created notes on the ‘resources’ page. Or download it here.

Original post published on 3 August 2015. Re-published on 27 April 2019.

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