In my last column I wrote about the support the “periphery” could offer a person experiencing a mental health crisis.
Many people with lived experience got in touch to thank me for the piece, some from psych wards, but also to remind me that a lot, if not most people with severe mental health issues, are not only without a periphery but also without close family and friends.
I think this point, that readers were brave enough to share, is deeply sad and largely true. My own experience of having so much support made me a rarity in the mental health system.
But it’s not a common experience. Researchers have found that rates of stigma towards those living with serious mental disorders (mostly psychotic) are on the rise.
A 2018 study found that “individuals with serious mental illnesses, especially those with psychotic disorders, may be especially prone to loneliness”, with the experience “highly prevalent” among schizophrenics, who report feeling lonely at more than twice the rate of the general population.
“Highlighting its clinical importance, loneliness has been reported as a significant contributor to worse quality of life in schizophrenia and individuals with psychotic disorders cite loneliness as one of the most important challenges in their life, second only to financial concerns.”
In my earlier years I often wondered if I had a bipolar “smell” that repulsed people.
When readers reminded me of how many of them feel and are alone, my mind was pulled back to the ward and my first admission. There were between 15 to 20 patients on the locked ward, and besides me and one other young man with depression, nobody else received a single visitor in my first six-week stay. I am not counting visits from court, the police and lawyers.
As I have written, I had visitors and cakes and flowers and beautiful bath supplies and phone calls and takeaway sushi and a soft grey merino blanket for my bed.
Nobody else had anything literally anything, and it made my stomach clench with pity. How were they supposed to get better when their lives and recovery were so bereft?
As I began to get night leave, to eat dinner with my family, my ward friends would wait up for me. “What did you eat?” They would ask with hungry eyes. “Spaghetti and meatballs,” I’d reply.
“Anything to drink?”
“Yes … red wine.”
These details were picked over and cherished. As my leave passes increased, patients began coming to me with simple requests.
Could I please buy them a new pair of slippers? Theirs has worn through.
Could I get some chocolate, some shampoo, a few pairs of warm socks, and once, a five-pack of women’s undies?
My family took me to the mall so I could buy things for other people – some in their 40s, 50s, and 60s – that they never had the independence, money or ability to buy for themselves.
When I was manic, I would monopolise the public phone next to the nurse’s station, ringing friends and directing them to do bizarre things, such as drive to a series of Australian country towns and send postcards to my family purporting to be me, happy and well. This ruse would allow me to kill myself.
During my phone calls, some patients would hang around and listen, getting me to relay what was transpiring in real time. Sometimes I’d hold the receiver up and they’d put their ear to it, quietly listening to the voice gently suggesting my postcard scheme had a few holes in it. Sometimes they’d ask to talk to my friends or family, “just to say hello”.
Few others received phone calls on the ward, certainly not multiple times a day. Mostly it was me on the phone, planning my death but still connecting, connecting, connecting. Because I had many people who would answer my calls.
What do these memories mean? That I understand the majority of people with severe mental illness are heartbreakingly isolated, and as the 2018 study found, lonely. It was not my experience, but I know it is the experience of the majority and therefore extremely important to design adequate public healthcare and supports around. Many readers mentioned how helpful group therapy was and wished there was more of it.
The behaviour that comes with a severe condition is isolating by its very nature. How can it not be? Such a small proportion of the world’s population live with severe mental illness, so it’s very hard for the majority to relate.
If you believe you’re leading an expedition team to Antarctica and your staffy called Bonehead is the expedition leader and you must all immediately go shopping to get snowsuits, how can someone not find that alienating?
I don’t blame people at all for feeling baffled, scared even. If I hate experiencing it, I am sure you hate witnessing it too.
But my good fortune is that I have never been abandoned. The people who can love someone day in, day out with a severe mental disorder are exceptional. I don’t think it is a common trait, but I think that how these people live with and handle mental illness in a loved one should be emulated, applauded and studied.
Who is accepting and empathetic, what allows them to be so, and how can more of us be that way?
About three years after my last admission I returned to a different part of the hospital to interview doctors about breast cancer for work. As I stood out in the gardens following my interviews, I saw a white-haired woman shuffling across the pavement in close proximity to a nurse.
I still remember everything I was wearing that day, from my black loafers to my red coat, which tells me how deeply this meeting impacted me. I remember what she was wearing too. Grey tracksuit pants, a loose black top, no bra.
It was my friend, my dear friend from the ward, all those years ago. I approached her and introduced myself, but I have no idea if she remembered me, her eyes were unfocused and unsure. She had deteriorated a lot since I’d last seen her, while I looked neat and tidy, thriving by comparison. I hadn’t been back to the ward since my fourth admission.
For three years I had been out, rebuilding my life and slowly learning to live with manic depression. For three years my friend had remained in stasis; alone, unwell, locked-up.
Quickly, I asked her if she needed anything.
“Slippers,” she replied. “My slippers have worn out again.”
• Eleanor de Jong is the former New Zealand correspondent for the Guardian. She now lives and works in the Kimberley town of Derby, Western Australia
• In Australia, support is available at Beyond Blue on 1300 22 4636, Lifeline on 13 11 14, and at MensLine on 1300 789 978. In the UK, the charity Mind is available on 0300 123 3393 and ChildLine on 0800 1111. In the US, Mental Health America is available on 800-273-8255
