Symptoms: Akathisia, brain zaps, emotional blunting, sexual dysfunction, cognitive impairment, insomnia, depersonalization/derealization, suicidal ideation, tinnitus, neuropathy, severe anxiety/panic, muscle/joint pain, dyskinesia, GI disturbances, blood pressure changes, high cholesterol
I was 21 when my life quietly shifted onto a path I never chose.
In 2011, I was hospitalised during a time of distress and vulnerability. I was young, overwhelmed, and searching for help. Although I was admitted voluntarily, the weight of medical authority felt absolute. I was told I had schizophrenia and that I needed to take antipsychotic medication. I remember the unspoken pressure more than anything. When you are that age, you trust. You comply. And I did.
I began taking antipsychotics without fully understanding what that would mean for the years ahead.
For over a decade, I lived under that diagnosis. I built my life around it, even as parts of me felt increasingly dulled and distant. The medications affected my body and mind in ways I couldn’t always articulate. There was a quiet disconnection, a blunting of self, as though I were watching my life rather than fully living it.
Three years ago, everything changed.
My psychiatrist looked at me and said words I never expected to hear: “I’m so sorry. I think you have OCD, not schizophrenia.”
In that moment, my past rearranged itself. The years of treatment, the medication, the identity I had carried, it all came into question. There was relief, yes. But also grief, confusion, and a deep sense of injustice.
Because by then, I was no longer someone who could simply stop the medication and move on.
I had been on antipsychotics for so long that coming off them has felt almost impossible.
For the past four years, I have been trying to reduce my dose of Latuda. Each attempt has come at a cost. Severe withdrawal effects have impacted my body in ways that are frightening and, at times, dangerous. In one doctor’s appointment, my blood pressure surged to 190/145. I experience persistent muscle pain, joint aches, and a profound sense of physical and emotional discomfort.
I have known akathisia before, from another medication, and I would not wish that inner torment on anyone.
These medications have altered more than just my mental state. I now live with metabolic syndrome and cognitive difficulties. I struggle with focus, memory, and clarity, things that once came naturally. I sometimes wonder how much these medications have contributed to other conditions I now face: Hashimoto’s disease, insulin resistance, high cholesterol, high blood pressure, endometriosis, and PCOS.
There are so many layers to this, and not all of them have answers.
What is hardest to explain is the loss of identity.
It is as if, over the years, pieces of who I was have been slowly eroded. The person I might have become feels distant, like a version of me that exists in another life. And yet, I still carry evidence of that potential.
At 18, I was awarded a university scholarship for teaching. At 31, I received another, the Persistence Scholarship for Early Childhood Education, recognising my determination to keep going despite adversity.
That word, persistence, has come to define me.
Because despite everything, I am still here, still trying.
I am now down to 30mg of Latuda, alongside fluvoxamine and agomelatine. Every reduction is a battle, but it is one I continue to fight because my goal remains the same: to come off these medications and reclaim as much of myself as I can.
I am not alone in this journey. My husband has stood beside me, and his family, his mother, a psychiatrist, and his father, a cardiologist, have witnessed firsthand the toll this has taken. Their presence has not erased the struggle, but it has made it visible.
And that matters.
Because so much of this experience is invisible.
It is the quiet suffering of side effects, the long-term consequences of decisions made in moments of vulnerability, and the complexity of navigating a system that does not always revisit its assumptions.
If there is one thing I would want others to understand, it is this:
A diagnosis can shape a life, but it is not always the truth.
And the cost of getting it wrong can be immeasurable.
I am still finding my way back to myself. Slowly, painfully, but with determination.
I hold onto hope that healing is still possible, that identity can be rebuilt, that clarity can return, and that one day, I will feel fully present in my own life again.