Why a mental health diagnosis is scary, but ultimately a relief

Date

Claire Capel-Stanley

A mental health diagnosis initially "felt like a sentence".

A mental health diagnosis initially "felt like a sentence". Photo: Stocksy

I'm a strong believer in the transformational power of words. Words can explain difficult subject matter, soothe hurt feelings, and heal wounds. But there's one type of word that I have strenuously avoided, and that is diagnosis. Specifically, I've avoided the diagnosis of my mental health condition, which until recently, I had mainly referred to as "that time I went crazy".

In 2013, following a lengthy period of depression, I experienced an episode of psychosis. I'm still at something of a loss to describe what this felt like. It started with mania, an all-consuming switch to high-speed, talking, moving and thinking so fast there was no time for the usual clutter of the everyday. After a few days, I had a major panic attack, and was sure I was dying. I completely forgot who I was, and ended up in a psychiatric hospital. I remember asking my friends to bring me clothes, things that were quintessentially "mine": favourite things to remember myself by.

But as I gradually came back to myself, I started to notice, with deep suspicion, that things around me had altered. Like Truman Burbank, I came to the realisation that I was the star of a reality TV show, and that my friends and family were all in on the act, colluding with the producers, to put me through gruelling tasks for an international audience.

This delusion lasted in varying degrees for several months, before it quietly lifted, and I recovered completely over the course of about a year. I was told I had experienced a stress-induced psychotic episode, fairly common among young people, but unlikely to recur.

Advertisement

Gradually, I shelved the whole experience and got on with my life. My friends knew what had happened - at time, of course, it was pretty difficult to hide - but in general I kept quiet about the whole thing, eventually laughing it off like a bad haircut or an ill-judged outfit choice. I tried to make that thing that was so incomprehensible barely real, even to myself. I suppose this was my version of saying pull yourself together.

It all began to feel like some sort of character-forming dream, until very recently. This year, I started to experience some of those same symptoms returning: the deep suspicion, paranoia, the sense that the world had dived into some hellish unreality from which there was no escape.

I saw a psychiatrist, and was diagnosed with major depressive disorder with psychotic features. It hardly rolls off the tongue. I thought it would make me feel better, but initially, it didn't. It felt like a sentence.

When I look back at my family history with mental illness, it is diagnosis itself that proves elusive. My sister and I have spent most of our lives caring for my mother, who has suffered from mental illness as long as I can remember, and there had never been a name for it.

We heard about various conditions, from fibro myalgia to chronic fatigue, to digestive disorders, arthritis and osteoporosis, which were trotted out to explain mum's constant ill health. Gradually, we realised that these conditions - while present - weren't all that was to blame for her insomnia, her rapid mood swings, her usual compulsions and most noticeably, her emaciated frame and strategies to avoid food.

Though we tried to find a doctor who could diagnose her, mum resisted. She declined quickly, and pretty soon she was below 37kg, barely conscious, and I was driving her to the emergency department. The most difficult part was the lack of that word which would explain her condition. I chose anorexia, but I delivered it tentatively, suggestively. I was not an expert, after all. It wasn't up to me to make the pronouncement. By this stage, we all feared that word.

My shyness didn't work. To my disbelief, I was told to take mum home to a nice dinner. It wasn't until I exploded with exasperation and fear in the emergency room, tears staining my face, that she was eventually admitted.

The lack of words for what, specifically, is wrong, is for me the most excruciating aspect of caring for someone with a mental illness, or for experiencing one. When doctors asked me if I have a history of mental illness in my family, I said yes but struggled to fill in those diagnoses, the words that matter.

All I know is that I come from a fairly long line of people who have "gone crazy". As a consequence, madness has always seemed to me much more like fate or destiny than a state of ill health. No wonder I absorbed my own experience with psychosis so readily. It only felt natural that there was some unnameable 19th-century destiny lurking deep within my psyche, waiting to undo me.

One in five of us, according to the Australian Bureau of Statistics, will be diagnosed with a mental illness in our lifetime. There are reasons the self-stigmatising language - crazy, mad, mental, shaky, scattered - clings on, despite the fact that so many Australians have intimate experience with mental illness. These have to do with the standard tools of diagnosis as much as stigma itself.

Mental illness is usually diagnosed through a set of questions based on the Diagnostic and Statistical Manual of Mental Disorders (DSM), which classifies the criteria for specific disorders. One of the major criticisms of the DSM model is that because diagnosis is reliant upon the patient's recollections, as well as the interpretations of the treating doctor, diagnosis can be highly subjective and varied. Though research into more objective biological diagnosis of some conditions is growing -  as a mental health worker once told me, diagnosis edges close to guesswork.

An atmosphere of mistrust around diagnosis still hangs low over contemporary treatments in mental health. With each iteration of the DSM, diagnoses are updated, reflecting new research but also changes in society and culture.

Homosexuality, for instance, was listed as a disorder until 1973. In the most recent edition, which was published in 2013, major depressive disorder can be diagnosed even in circumstances of grief, for example after the death of a loved one or child.

Perhaps this murkiness is why catch-all terms like crazy and mad cling on, obliterating medical language. When patients are misdiagnosed, or mistreated, they can be turned off medical support altogether. Perhaps they feel there is no name for their particular fate, nothing shared, common or communicable beyond that old, irrevocable "madness".

Diagnoses are practical on the condition that we accept them, use them, and understand that they sometimes change. If we want to end the stigma around mental illness, we also need to see diagnosis as a positive first step, not a lifelong, infallible sentence. I'm choosing to accept mine because I've seen the chaos that results from their rejection. If this means a choice between a wordy diagnosis subject to change and stigma, and a random, non-specific madness, I'd choose the former. Because I don't want my kids to end up crying in the emergency department, trying to name the magic word.