Living Protracted

It has now been 11 years, two months, and five days since I took my last psychotropic medications, Prozac and Ativan. And I must confess that after all this time, recovery still feels impossibly out of reach. You see, I am part of a group of individuals whose lives have been radically altered by something few truly understand: severe protracted withdrawal, or long-term psych med injury, or what is now known as BIND—benzodiazepine-induced neurological dysfunction, though it extends beyond just benzos.

We are people who have been seriously ill for many years, even decades, and we have not only suffered physically and mentally, but socially. We’re shunned and ridiculed by the world, and even by our own withdrawal communities. Why? Because our recoveries are delayed, inconsistent, or in some cases, have regressed without a clear explanation—raising doubt, confusion, and suspicion about the truth of our experiences.

I don’t have concrete answers for why I remain so unwell after all this time, but theoretically it could be because I was abruptly taken off the Prozac and Ativan in hospital after a two-week admission. This time around, I had only been on the meds for a few months. Or perhaps it was because I became kindled (a phenomenon of increasing severity of withdrawal symptoms with each subsequent period of withdrawal) from 20 years of intermittent use and failed tapers. Or perhaps it was because of how long my acute phase lasted, which could only be indicative of the severity of the injury to my brain/nervous system. But the mystery deepens when I look around at others like me. Some were short-term users, some completed years-long tapers, some had completely different medication histories—and yet we all ended up in the same place: in protracted withdrawal, debilitated and bewildered.

There’s no denying the enormity of suffering this condition inflicts. I personally know individuals who’ve been housebound for over a decade, too sick to leave their homes, trapped in relentless symptoms: nerve pain, dystonia, crushing fatigue, sensitivities to sound, light, touch, even food. Neurological chaos. Mental anguish. The scope of it is so extreme, so prolonged, that many outside this experience struggle to believe it’s even real. This adds to the reasons why protracted withdrawal is often misattributed and misclassified.

Its prevalence is also underestimated. The official statistic of the percentage of people who become protracted from psychotropic medication withdrawal is 10-15%. This originated from Professor Heather Ashton’s studies in the 1980s, based off her clinical observations, and was later supported anecdotally by smaller studies. It is not a hard epidemiological statistic, more of a clinically informed estimate that has become a working reference point that desperately needs an update. Emerging anecdotal reports and lived-experience data increasingly suggest that the true percentage is substantially higher, potentially in the 40-60% range. Long-term, large-scale epidemiological studies are still lacking, and therefore the original 10-15% figure remains.

As I write this—from my bed, riddled with vertigo, headaches, nausea, irrational fear, pain, and suicidal ideation—I ask myself the question that haunts so many of us: Is fighting still worth it? Recently, when my father was in the ICU, the doctor told us that if he survived, his quality of life would be severely diminished, and that “it wouldn’t be a life worth living.” Those words have stayed with me, because in 11 years, two months, and five days, I have been unable to work, to travel, to go out for dinner, to attend life’s milestones. I couldn’t be by my father’s side when he took his last breath. I couldn’t attend his funeral. By that ICU doctor’s metric, I have not been living a life worth living—and the weight of that reality bears down on me every single day.

After all these years, the hope I once held for a full recovery has gradually faded from my heart. It hasn’t been a sudden letting go, but a slow, painful reckoning with a reality I never chose. What remains now is not hope for myself, but a different kind of hope—one that looks forward, beyond my own experience. I now hold hope that, one day, the medical community will finally acknowledge and understand the reality of protracted withdrawal/long-term psych med injury and BIND.

This condition has taken so much from so many of us—years of our lives, our identities, our relationships, and the chance to simply feel safe in our own bodies and minds. And yet, despite the suffering, we have remained unseen, dismissed, or misunderstood by the very systems meant to help us.

In my acute phase, as I paced relentlessly from akathisia, living off no sleep, unable to eat, hallucinating and riddled with nerve pain, I was told by the very psychiatrist who rapidly took me off the meds that I had now developed an anxiety disorder and simply needed a different antidepressant and better health coverage. The desperate concerns from me and my husband that the medication was responsible were laughed off. I never saw that psychiatrist again.

My deepest hope now is that future patients will not have to endure what I and many others have, but sadly, history is repeating itself. Right in this moment, someone’s drug-induced hell is being misclassified, denied and gaslit. Stories like mine being shared and taken seriously are the only hope we have for changes to the system. A system that will hopefully one day recognise the signs of protracted withdrawal and BIND, and offer much-needed compassion and informed care. Those who suffer will serve as a foundation for awareness, research, and change, even though we didn’t receive the support we so desperately needed, but perhaps, through greater understanding, those who come after us will.

I never set out to become the face or voice for long-term psych med injury. This isn’t how anyone would want their life to end up, but as the years passed and life continued without me, I realised I could no longer hide in silence. And I reluctantly speak out because of necessity—not just for myself, but for all of us who have been left behind, misdiagnosed, or misunderstood. So, I share my story because I believe our voices matter, and I hope that by me speaking out, it will give others the strength to do the same. It’s only when we raise our voices together—louder, stronger, more unified—that we become impossible to ignore. And in that noise, maybe, finally, change will come.