Onika L. Dainty

The Page Became My Place of Survival

After nearly 20 years of navigating the highs and lows of Bipolar I disorder, I thought I understood the facets, complexities, and myriad shades of my illness. Then a new diagnosis, schizoaffective disorder, bipolar type with borderline traits, seemed to erase everything I believed I had learned. Over the past year, putting pen to paper has helped me live inside the latest version of my story. It has taught me how to love, learn, and accept myself as I rewrite a past I no longer recognize, a present where I am still searching for where I belong, and a future full of unknown possibilities.

This is not just a story of medical labels. It is a lived, raw, year-long journey of unraveling, discovery, grief, and creative survival. There were times when reflecting on the new diagnosis left me paralyzed by self-doubt, self-loathing, and defeat. There were other moments when I had to be radically honest with myself and ask: What does re-diagnosis change? In between those moments, I shed tears of grief over a lost identity, felt guilt over mislabelled lived experiences I had shared with the world, and struggled with disbelief over how broken I felt existing in a broken system. I had once believed I was thriving, yet suddenly found myself barely surviving.

This blog shares how one year of journaling, storytelling, and reflection helped me move through the chaos of re-diagnosis and into deeper self-awareness. I hope my journey through madness encourages you to reflect on your own experience of diagnosis or re-diagnosis so you can move from chaos to calm and continue your journey toward healing, recovery, and wellness, no matter the missteps or barriers that try to defeat you.

Bipolar I Disorder: Twenty Years in a Frame That Almost Fit

At 17 years old, I was assessed by a child psychologist. After that assessment, I was told I was experiencing generalized anxiety disorder and depression. No one told me that my journey through madness had begun that afternoon in a Scarborough hospital, in the office of “Dr. Glass,” the name I gave him because of his cold and clinical demeanor.

No one mentioned that anxiety and depression can sometimes be precursors to bipolar disorder, or that for many women, onset may happen in their mid-20s, often shaped by stress, trauma, and other precipitating factors. So at 17, I walked out of Dr. Glass’s office with my first mental health diagnosis, completely unaware that my mental health journey was beginning. I did not know there would likely be other diagnoses, misdiagnoses, and eventually re-diagnosis on my path toward wellness, emotional stability, and better health.

When I received my former and longest-standing diagnosis of Bipolar I disorder, I was 24 years old, just out of university, experiencing my first psychotic episode, my first hospitalization, and my first real initiation into the world of psychotic and mood-related disorders. The severity of my manic psychosis led clinicians to conclude that I was on the schizophrenia spectrum and other psychotic disorders, while also meeting nearly all the criteria for a manic episode, which formed the basis of a Bipolar I diagnosis.

So after the second mental health assessment of my life, I was placed in a frame, like a picture on a wall, with very few medical professionals noticing that the bipolar frame around the landscape of my mental health was off, crooked, leaning slightly the wrong way. It took 20 years of manic-psychotic episodes, hospitalizations, assessments, and reassessments for the mental health system to realize I had been misdiagnosed with bipolar disorder. The frame almost fit, but it did not capture the complex landscape of my mind or the combination of mental illnesses I exhibited both in and out of psychosis.

It was not until my most recent assessment at Ontario Shores Centre for Mental Health Sciences, where I was observed in one of their Complex General Psychiatry units, that psychiatrists realized my condition was not a simple one. Though I am still considered to be on the spectrum, the symptoms they observed, including auditory hallucinations, delusions, paranoia, and disorganized speech, did not fully align with the Bipolar I diagnosis I had carried for two decades. Instead, the new frame was called schizoaffective disorder, bipolar type with borderline personality disorder traits.

I would not learn about my re-diagnosis until a year after my discharge from Ontario Shores, but in truth, the discovery brought relief because in my heart the Bipolar I diagnosis felt true, until it did not. It was like being handed a giant blank canvas, with my new diagnosis as the uncomfortable centrepiece surrounded by empty space. With the support of my medical team, my personal support system, psychoeducation, psychotherapy, and my own willingness to keep moving forward, I began letting go of the old frame and working with a new canvas. I was able to reshape my mental health identity, create a more complete picture, and release a former bipolar disorder diagnosis that had almost, but not quite, explained everything in my symptom profile. Now it was time to move forward with a diagnosis that fit my experiences, both past and present, and changed the mental health landscape through which I viewed myself and my future.

Schizoaffective Disorder: The Diagnosis That Changed Everything and Nothing

What Is Schizoaffective Disorder?

Schizoaffective disorder is a chronic mental health condition that combines symptoms of schizophrenia, such as hallucinations, delusions, or disorganized speech, with a major mood disorder, either depression or bipolar disorder. It involves both psychosis and severe mood symptoms, and it typically requires a combination of medication and psychotherapy for long-term management.

There are two main types of schizoaffective disorder. Bipolar type includes episodes of mania and sometimes depression. Depressive type includes only major depressive episodes. One of the key features that distinguishes schizoaffective disorder from other psychotic disorders is that psychotic symptoms must be present for at least two weeks without prominent mood symptoms.

Unlike bipolar disorder, schizoaffective disorder often involves persistent psychosis or delusions outside of mood episodes, which can lead to significant functional impairment. There is no known cure, but the condition can be managed through medication, including antipsychotics and mood stabilizers, as well as psychotherapy and ongoing support.

A Newly Diagnosed Woman’s Reflection: The Emotional Impact of Schizoaffective Disorder

Going from bipolar to schizoaffective in what felt like mere seconds, the day I discovered the new diagnosis while reading my social worker’s assessment notes from February 4, 2024 in my medical records, was more than a shock. It was life-shattering. I went from being a 42-year-old woman with a 20-year history of Bipolar I disorder to someone recently re-diagnosed with schizoaffective disorder, bipolar type with borderline traits.

As I read the notes and tried to interpret their meaning, I could feel my mind pressing against my skull, my ears ringing, and my palms turning clammy with sweat. It was as if my world stood still, yet the ground beneath my feet had become unstable. With every word, my mind screamed in disbelief as the sound of my tears filled the still silence of my living room. For the first time since my mental health journey began, I felt truly alone.

Shame, confusion, betrayal, and fear washed over me like summer rain. But there was something else hidden in the recesses of my mind, fighting to come through, an emotion demanding acknowledgement through the shock and grief: reluctant relief. For 20 years, I had lived in a space of the unknown. Unknown symptoms that did not fit the bipolar profile. Chaotic psychotic episodes experienced without any real explanation. A diagnosis psychiatrists believed was the key to treatment and management. And beneath it all, the constant questions: What is wrong with me? Why does a diagnosis I have carried for two decades feel wrong with every episode I have? The answer, painfully, was because it was.

When I was 24 years old, a doctor labelled me based on one episode and a handful of DSM criteria, and ever since that day I was never entirely comfortable in my bipolar identity. I simply did my best to make it work. Relief quickly turned into grief over losing an old narrative, and anxiety over embracing a new one. I had fully embraced bipolar disorder, but could I now embrace schizoaffective disorder, especially when it came with equally complex elements of bipolar type and borderline traits? Could I begin a new journey of self-discovery, a new journey toward women’s mental health, healing, and recovery, and leave the baggage of old labels behind? Only time, along with self-compassion, self-love, and deep self-reflection, could begin to answer the many questions that came with my new diagnosis.

Writing: My Mirror, My Map, and My Medicine

After discovering my misdiagnosis and new diagnosis of schizoaffective disorder, I felt lost, so I did the only thing I knew how to do to find my way again: I began to write. I had been writing through mental illness, through all the ups and downs and every moment in between, from the very beginning of my journey. I have journals and hand-crafted notebooks, some gifts from people who love and understand my struggle, others just loose-leaf pages requested behind the walls of psychiatric units and filled with psychosis-driven thoughts. Writing daily became a ritual, one that has always helped me find my way back to myself and back to sanity. Journaling for mental health clarity has always brought me comfort in the chaotic world psychosis creates around me.

When I journal through the various stages of illness, depression, hypomania, mania, and psychosis, it becomes a record of my mental growth and progress. When I finally reach the light at the end of an often very dark tunnel, I have the opportunity to look back and reflect on the different voices that come through me as I move from illness back to baseline and wellness. The patterns in my language, the themes and tones of my daily writing, even my penmanship, all serve as indicators of my thought process and illness progression in ways therapy simply cannot always catch in a one-hour daily or weekly session.

There is therapeutic value in storytelling, even when it is done in madness, while healing from symptoms that make you lose yourself. When I write, no matter the stage, I have always been able to find my way back to baseline, back to wellness, and back to me. Writing has become my map, my mirror, and a form of medicine. It has supported my resilience, strengthened my self-awareness, and given me a structure and routine to return to when everything else feels uncertain.

Final Thoughts

One Year Later: What I Know Now That I Didn’t Then

Living with schizoaffective disorder has been an education. My new diagnosis has presented many challenges, especially the resistance I still feel when I share it with others. I still have a habit of cutting myself off before I speak of the type and the traits because I am still discovering what they mean within my symptom profile. What I have accepted is that schizoaffective disorder is not just a label. It is an invitation to see myself and reflect on my experiences more fully. Though I felt broken a year ago when I discovered my re-diagnosis, today I feel more honest and more authentic in my experiences and in my journey through madness toward wellness. My mental health recovery has been shaped in large part by writing, which has taught me that I do not need to be “stable” to be whole.

Reflecting through writing has strengthened my resilience, self-compassion, self-acceptance, self-love, and ultimately my self-awareness. This past year was not just about surviving a re-diagnosis. It was about reclaiming my voice, one word at a time. Writing did not cure me. It witnessed me. And sometimes that is what healing looks like.

To my readers, take this question with you on your own journey toward healing and women’s wellness, as I have carried it with me over the past year and beyond:

What if madness isn’t the end, but the beginning in disguise?