As a person living with mental illness for over twenty years, my journey should have included more resources.
I was first hospitalized just before my twenty-first birthday.
I am often asked about my hospitalization – what led to it, the experience itself, what was it like in a psychiatric unit? While most of these questions I’m sure are well-meaning, there is always this flavour of voyeurism, of curiosity. Like I am, in some way, a spectacle.
But the simple answer is that I was taken by police from my university dorm into the emergency room of a local hospital. I waited almost forty-five minutes to be triaged, at which time, I knew the nurses were disgusted with me.
Similarly, I am often asked about my diagnoses – bipolar disorder particularly.
And of course, being a writer, my own source material is always rich pickings in a way that I find helpful for both myself and my readers.
But what I’m almost never asked about is what happened after I was released from the hospital. I had a diagnosis, sure. An inaccurate one at the time, which took well over a decade and undoing years of medical mismanagement (in my opinion) to fix. But when I was released that rainy April day, I had a prescription slip in my hand along with my discharge report, slowly becoming soaked in the rain. My body was acceptably, medically, physically healthy.
So, I could go back to my life, right?
I think back on how young I was, how confused and afraid. My first hospitalization shifted something very fundamental in me and I was never the same again. It was like the ground beneath me moved to a place that wasn’t steady. I wasn’t steady.
The thing is, in those days, weeks, and months after my first release, I was still as confused and afraid as I was before. Only my fear was compounded by the fact that I was so scared to tell anyone I’d been hospitalized on a psychiatric hold. Stigma was still a significant factor in my life and there was one simple question I know I needed to ask, but for many reasons, couldn’t:
It’s this part of the story that isn’t often told: the what now chapter. For someone like me, who was hospitalized over two decades ago, this wasn’t a question I even really knew to ask. It wasn’t like when I was released from the hospital I was handed a pamphlet or given a directive as to a treatment plan. I didn’t even have a family doctor, let alone a treating psychiatrist or therapist.
So, I was just released back out into the world, with no education, no knowledge about what was wrong with me. I just… went back to life.
Less than a year and a half later, I was back in the hospital. And what followed for years, was a repeat of the same thing: mental health crisis, hospitalization, stabilization, release, repeat. Each time, my thin sense of self chipping away, only to be replaced by this version of me that had been thrust under my nose: crazy, spoiled, deranged, unhinged, uncontrollable.
All of this without any indication as to what was actually wrong with me, let alone a plan for a future that included education and treatment.
This unfortunately, is common among folks with serious mental illness, like bipolar disorder or schizophrenia. Knowing I’m not alone in this should make me feel better, right?
But it doesn’t. It just makes me angry.
The period after psychiatric discharge is an extremely vulnerable time.
It took me years to realize that something was wrong with me, yes, but maybe that wasn’t my fault. So, because I’m a relentless researcher (that also comes with being a writer), I gathered as much information as I could on various psychiatric disorders, even returning to university in my thirties to study neuroscience and psychology. I was pretty cliche: studying psychology to understand myself better. But that’s exactly what happened.
What also happened was a trickling feeling that what I had experienced — lack of guidance, treatment, and information — shouldn’t have happened. I should have had a solid treatment plan. I should have had a therapist and psychiatrist, and I should have had a safe place to recover, working towards a better understanding of myself and my mental illness.
But that’s not what happened. And I realized that this was a common occurrence.
The period after psychiatric discharge is an extremely vulnerable time for youth facing mental health challenges. Poor discharge planning, treatment planning, and lack of support significantly increases the risk of readmission.
What’s even more difficult is how these hospitalizations impact youths’ sense of themselves and their place in the world. How they are able to interact with peers is altered with repeated life disruptions, such as hospitalizations, that levy a sense of otherness and isolation for youth at a precarious developmental time in their lives. For youth living with mental illness, these feelings are compounded by a continual undercurrent of stigma.
Sharing our stories can be transformative.
Why don’t more people do it?
In summer of 2021, I had the opportunity to interview folks who had, at some point in their youth, been hospitalized for mental health reasons. It was a series of reported pieces I was investigating and writing for my local newspaper, West End Phoenix. The title of the series was aptly named, “When we return.”
Going into the project, I was incredibly excited. I was so keen to unearth these stories—stories that I knew would mirror my own in a lot of ways—while peeling away the layers of the holes in the mental health system and how, despite the strides we’ve made, so many youths are still being failed.
I knew this was going to be the biggest challenge I’d faced yet in my journalism and writing career. But what the challenge actually was turned out to be completely different than what I thought it would be.
People simply weren’t willing to talk. I was surprised because here I was, someone who was nothing short of an open book and very public about my mental health journey, and yet, it seemed like other folks weren’t comfortable talking publicly—many of whom didn’t want to talk at all—about their experience.
When I was finally able to find some folks, the stories were eerily parallel to mine: complete life disruption, confusion, isolation, and othering. Their experiences after being released were something similar to slipping into fog, unable to navigate their way to something tangible that could help them with their mental illness journey.
What was most prominent and what resonated the most with my experience was that following those feelings of confusion, isolation, and uncertainty these folks had had, rehospitalizations were extremely common. Many of these people had been in and out of hospitals for the majority of their young lives, and into their adult years they were feeling the repercussions of their lives being so disrupted.
It is, unfortunately, a ubiquitous story.
Young people need a safe place to land to nurture hope.
So, what is the solution? I simply don’t know, and nor is it my responsibility to provide one. What I do know is that when I was released from the hospital over twenty years ago, I needed a soft place to land. I needed comfort, privacy, security, and a gentle hand to guide me through understanding mental illness, treatments, and therapies.
I still feel some grief for the young person I used to be. I wonder, now years past, what would have happened to me if I did have a safe place to not just recover, but to learn about myself, my illness, and most importantly, meet other people like me who lived with serious mental illnesses. What would my trajectory have been?
It’s difficult to think about what could have been, and a part of me is angry that I didn’t have options. Another part of me is still angry that for many, there’s still a scarcity of resources. What happens to these youths? Where do they go?
Are they able to find a sense of hope and find their way through the deepest, darkest days of their lives?
If youths living with mental illness have a safe place to explore who they are as a person living with mental illness, perhaps they might one day become adults who, in turn, can tell their own stories, helping other young people find their own way through.
Twenty years have given me some distance from those first traumatic experiences in the mental health system. It took me a long time to find my footing–which was and for the most part, still is anchored in finely-honed anger and frustration at the continuing lack of resources and ongoing stigma, despite a lot of (what I see as performative) gestures towards inclusivity. It’s this fuel that has kept me going, forging through article after article, essay after essay, interviews with folks living in the trenches of mental illness and lost in the healthcare system, constantly finding new ways to articulate this ongoing issue so more people will understand and feel compelled to take action. Or simply, just to listen when someone needs an ear.
I still live with the ups and downs of my own mental illnesses, but what helps me is knowing that if I do speak up, if I do continue to write, that changes might continue to happen. Words can be galvanizing.
And at the end of the day, when I’m alone or I’m struggling, sometimes I’ll go back and read what I wrote and hear the voice of that young person I was, lost and afraid, and know that if I tell my story, just one more time someone else will speak up too.
Eli’s Place will be a rural, residential treatment program for young adults with serious mental illness. To learn more about our mission and our proven-effective model click here.
K.J. Aiello | Friend of Eli’s Place
K. J. Aiello is a Toronto-based writer and author. Their work has been published in The Globe and Mail, The Walrus, Chatelaine, and Toronto Life, among others. Their debut book, THE MONSTER AND THE MIRROR, will be released in Fall 2024 with ECW Press. Learn more about K.J.’s award-winning work and their upcoming book here.
@kjaiello_writer | contact@kjaiello.ca | www.kjaiello.ca
Photo credit: Darius Bashar
