Many years ago, soon after I got out of the mental health system I applied to see my hospital notes. They arrived, two inches thick, inside some tidy brown folders.

I was shocked. I knew that the psychiatrists’ main interest in me was my psychopathology. I knew they found me frustrating, because their treatments didn’t work and I kept coming back. I knew they were irritated when I questioned their expertise.  But what I don’t know until I read my notes is how little regard they had for me as a human being in a desperate existential struggle. I was to them, directionless, schizoid, disordered, immature, inadequate, inappropriate, histrionic, colourless, overactive, withdrawn, and psychotic. Inside the big brown folders, nothing was written about my suffering or despair. No-one wrote a positive word about me. No-one described me as competent or strong, or even as an ordinary human being who was a conglomerate of good, bad and indifferent qualities.  

I kept checking to see if they’d got the right name on the covers of the folders. The files were all about me but I couldn’t see me in them. Worse still, there was no process that gave me a right of reply or allowed me to add my version to them. I started feeling more and more alienated. 

Then it suddenly occurred to me that my right of reply was sitting in my box of journals under my bed. While the hospital staff were writing their version of my madness I would sometimes write mine while crouching in my bed or the hiding in the toilets. 

I dragged the box into the daylight, grabbed a pair of scissors and started to match my journal entries with the hospital notes by date. Over the next few hours I created a linear collage of my journals interspersed with their notes, lined up from one end of the room to the other. 

I was astonished at what I saw; two parallel accounts of my madness that could never meet, just like the sun and the moon can never shine brightly in the same sky. When the staff wrote about me they did it in the course of an ordinary day’s work. They wrote about what they saw on the outside through the thick lens of psychopathology. I wrote about what I felt on the inside, unfiltered by professionalism or pretensions of objectivity. 

With some deletions, a little bit of editing and a lot of typing, the collage was transformed into words on clean paper. I called it 'Two Accounts of Mental Distress' and it spanned a hospital admission for an episode of depression. Later, at conferences and training sessions I read it out loud, with someone else reading out the clinical notes. It became a chapter in a British book called 'Speaking Our Minds' about people's experiences of mental health services that was published in 1996, and in a 2009 British publication called ‘Mental Health Still Matters’. You can download the full paper here. Here is an extract from it. My journal entries are in italics. The psychiatrist and nursing notes are in plain text.

O

Today I wanted to die.  Everything was hurting.  My body was screaming.  I saw the doctor.  I wanted to collapse against the wall and cry out and show him how I feel about things but I said nothing.  Now I feel terrible.  Nothing seems good and nothing good seems possible.

I am stuck in this twilight mood where I go down like the setting sun into a lonely black hole where there is room for only one.

Flat, lacking motivation, sleep and appetite good.  Discussed aetiology. Cont.  Li Carb. 250 mg qid.  Levels next time.

O

I am lying face down behind a chair in the waiting room of the hospital.

I am a long piercing scream. All screaming on the inside of me and out of the pores of my skin. My screaming and my self are one. This is pure pain.

The doctor comes along and snaps at me to get up.  He tells a nurse to put me to bed. I have never ever been in so much shame.

Guilt swoops down on me and pecks my sense of being good to bits, as I lie here snared between my sheets like a whimpering animal.

I am full of red hot blame at myself for everything. I cannot bear being so thoroughly bad. I am carrying hell around inside me.

On arriving on the ward - spent the entire day curled up on the waiting room floor behind a chair.  Could not talk.  Impression of over dramatisation but with underlying gross psychological turmoil.  She is difficult to engage and to that effect I have admitted her for a period of two weeks in order to consolidate her working relationship with us.

O

I am locked in here alone in this black box. I used to hide its blackness with colourful decorations. On its walls I painted windows with pleasing views on them. Now I have been stripped right back to the bare boards of my mind.

My world has been emptied out, as if burglars broke into my mind and stole all my power. On their way out they pulled down my blinds. Now, I cannot see the world and the world cannot see me.

Poor eye contact, slow speech and movements.  Stated her head felt empty and fuzzy; vision disordered, things appearing very ugly.  Mentioned need to find meaning in her depression - not just a wasteful experience.

O

Download Two Accounts of Mental Distress here.