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| When the Diagnosis Changes: Living Through a Shift from Bipolar I to Schizoaffective Disorder |
After Twenty Years Everything Shifted
For almost two decades, I shaped my identity, routines, and survival around being someone with Bipolar I disorder. Then one day, after another hospitalization and a deeper evaluation, I was re-diagnosed with schizoaffective disorder, bipolar type, with borderline traits. The experience left me feeling off balance.
What shook me most was not only the discovery of the new diagnosis, but the lack of communication from my care team. In mental health care, there is often a strong focus on stabilization and symptom management, while psychoeducation and transparency are left behind.
In my case, the diagnosis change occurred during my residency at Ontario Shores Centre for Mental Health Sciences. I was still deeply in my illness when it was presented during a clinical case conference, delivered in medical language without explanation. No one took the time to help me understand what this shift meant for my treatment, medication plan, or future as someone now living with a different diagnosis.
A new diagnosis after living so long under a familiar label can feel like losing your footing. Yet it can also bring clarity, relief, and the opportunity to rebuild. It invites reflection on the past, intention for the present, and planning for the future with honesty rather than fear.
This blog is a deeply personal look at what it means to be re-diagnosed after years of living with Bipolar I disorder, how that shift impacted my sense of identity, and what I learned from beginning again with a new language for my mental health.
The Diagnosis That Defined Me for a While
For nearly twenty years, Bipolar disorder became my identity. It was the lens through which I understood my moods, my choices, and my challenges. At first, I resisted it. Later, after learning to manage my illness, I came to call it my superpower. I even tattooed the word Bipolar on my left forearm as an act of defiance in a world that misunderstood what living with this condition truly meant.
There was duality in that identity. During manic and psychotic episodes, I felt euphoric and fearless, as though past trauma could no longer touch me. I believed I was unstoppable. Yet those same episodes led to destructive decisions, strained relationships, and repeated hospitalizations marked by isolation, loss of autonomy, and deep emotional loneliness.
Still, familiarity offered comfort. After fourteen hospitalizations, I knew my bipolar cycle well. Anxiety and depression would arrive first, often triggered by trauma, stress, or insomnia. Hypomania followed with excessive energy, impulsive spending, and risky behaviors. Eventually, mania and psychosis would take over, ending in hospitalization. This cycle became my normal.
Looking back now, I can see there were signs that something did not fully fit the bipolar framework. There were symptoms that lingered outside mood episodes, pieces of my experience that never quite aligned with the diagnosis I carried as my identity.
The Day Everything Changed
I remember with startling clarity the day everything shifted. I had just begun a trauma informed treatment program through Ontario Shores and was required to complete weekly questionnaires through the hospital portal. For the first time, I was granted access to my medical records.
Out of curiosity, I began reviewing past psychiatric notes, assessments, and daily reports written during my residency. Then I opened a psychosocial assessment dated February 2, 2024.
It read:
Ms. Onika Dainty is a 41 year old woman with a diagnosis of schizoaffective disorder, bipolar type, with noted borderline traits.
I read it once. Then again.
My first thought was disbelief. Then anger followed. I was almost a year out of hospital and this was the first time I had seen this diagnosis. Questions flooded my mind. Why was I never told? How many people knew? How was I supposed to move forward if I did not understand what I was living with?
At that moment, what little trust I had in the mental health system fractured. I reached out to my support circle in tears, mourning the loss of an identity I had carried for twenty years.
My cousin and Grama Judie reminded me of something grounding. Nothing about me had changed. The diagnosis was words on paper. I was still Onika, still resilient, still equipped with tools that had carried me this far.
When I met with Dr. A, my outpatient psychiatrist, he acknowledged that he had been aware of the diagnostic shift. He explained the reasoning behind it. My prolonged psychosis outside mood episodes, treatment resistance, and complex symptom presentation during my residency had led clinicians to re-evaluate my diagnosis.
Suddenly, pieces that never fit before began to make sense.
Grieving, Reframing, and Relearning
It has been nearly a year since discovering my diagnosis of schizoaffective disorder, bipolar type, and I am still learning how to hold it. Processing a diagnosis change requires grief. I had to mourn the identity I built around Bipolar disorder, reframe familiar pain with new language, and unlearn the stigma attached to a condition I once feared.
In 2019, I publicly advocated for Bipolar awareness through national campaigns, interviews, and speaking engagements. I proudly told my story as a Caribbean Canadian woman living with a severe mood disorder. I often said Bipolar disorder was my superpower.
Learning that I had been misdiagnosed shattered me. I questioned how I could have built a platform, a voice, and a sense of purpose around something that was never entirely accurate. I felt like an imposter frozen in uncertainty.
Grief followed its familiar stages. Denial gave way to anger. Bargaining convinced me that schizoaffective bipolar type still meant I belonged in the bipolar category. Depression left me immobilized. Acceptance came slowly.
What I ultimately realized was this: the failure was not mine. The failure lay in a system that prioritizes crisis stabilization over patient education and informed consent.
Once acceptance arrived, I returned to what has always grounded me. Education. I studied the DSM 5, read everything related to schizoaffective disorder, and finally saw my lived experience reflected clearly. Symptoms that once confused me now had context. Knowledge gave me power and peace.
Final Thoughts
You Are Allowed to Evolve, Even in Diagnosis
After more than twenty years of living with severe mental illness, I carry invisible battle scars. I have learned painful lessons and received unexpected blessings. Perhaps I was not meant to learn of this diagnosis while still fragile and newly discharged. Perhaps I needed stability first in order to receive truth without collapse.
Today, I believe this diagnosis was not the end of my journey but an evolution of it. I was never broken, only misunderstood. When treatment finally aligned with the truth of my experience, my healing deepened.
My mental health diagnoses are part of my story, but they are not the entirety of who I am. Identity, like healing, is fluid. It changes as we grow, learn, and survive.
A new diagnosis does not erase your past, your progress, or the strength it took to reach baseline. It simply clarifies the path forward.
To my readers:
Have you ever had to let go of an identity in order to step closer to the truth of who you really are?
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