As a young woman, I believed the story I was told and internalized the language of the psychiatric system. The story it told, the song it sang, was that I was broken, that I had a disease, and that I had no other choice besides medication if I wanted to survive in the world I lived in—the white, patriarchal, imperialist, and commodity-obsessed culture I existed in. But the truth is that this story—a deceptive lullaby—put me so deep into the numbness of sleep, it nearly killed me.
These days, I find myself wondering what particular details of this story made it such a destructive force in my life? Some find this story helpful, even healing. So what made psychiatry’s attempt to “save me,” the language they used, very nearly destroy me instead?
Why did this story become the only thing standing between me and healing?
My goal over the last three years has been to come off all psychiatric medication. Throughout this journey I have always had the grounding intentions of finding my own definition of wellness, what it meant to thrive in my own truth—the truth of who I am—and to reclaim my right to choose my own path. I fought to reclaim my right to choose what kind of help I wanted, which I had lost—in gross as well as subtle ways—at 21 when I was hospitalized and labeled Bipolar.
And I found a path from feeling helpless to heal, to reclaiming the hope of recovery, from the label of disease to describing my difference as diversity, from violence and force to my right to choose—to empowerment and sovereignty over myself.
I fought to choose which of my perceptions and emotions I could or couldn’t face without medication. I also learned the ways the hardships of my past, and the grieving I had yet to do, impacted my ability to cope with these diversities. And I fought to find all this without someone else’s narrative of what was and was not normal being enforced on me. I wanted to choose the why of help, in what form it came, and how it came to me.
I knew, when I saw through the fault lines of the psychiatric song, that only I knew these things, and only I had the key to understanding myself.
The way my life had gone prior to my diagnosis—the culture and family I was born into, my gender identity, my sexuality, the era I lived in, and the nature of my diversity—made this journey what it was: a kind of hell, existing in constant tension with my authentic self. And I am not alone in this kind of existence.
But, looking back now, the most harmful lack, besides all the ways my truths were neglected, was the absence of a language, an absence of story, that could guide me towards a better life. There was a song, a story, that could have shown me how to make it easy, but it had been lost in my time, my culture. All I found was the deafening presence of a language filled with harm and eradication, a language that only knew words that could levy shame onto me.
In this article, I want to share the journey I took to find a new language, a new story, around my experiences and how that journey impacted my survival. I truly believe if I had not done what I did over the last few years, I would be an empty chair at my loved ones’ dinner tables.
The first thing I had to do, once I looked up from the darkness I was in and found my courage to live, was rebel against everything I thought I knew, nearly every thought I had about the world. I had to rebel against the words others around me used. I had to look at everything anew with great scrutiny—even the words I was meant to trust—sometimes especially the ones I was meant to trust—the ones repeated most often. I had to look at the entire language of psychiatry which had become how I spoke about myself and how others in my life spoke about me.
It was a rebellion in its essence and intention because I realized this language had everything to do with power. It was bent on oppressing what it meant to be a human being, naturally diverse (as all human beings are), in pain, and needing the freedom to grieve loss. To find my own freedom, I had to fight for it—to rebel. I had to fight with all my strength to make new, empowering songs live in me; fight to make each new story a reality I could rely on within me. I had to fight really hard, up against people and ideas that felt like real-life monsters in a recurring nightmare. Such prisons of story and song are some of the hardest prisons to escape.
I see language as cultural and personal architecture and I see it as generative of our realities day to day. I see art similarly. Language becomes perception and then transforms the spaces we walk in every day. It is generative in that it can create our lives, and even destroy them, and it certainly creates the institutional systems and paradigms of our culture. That’s why I often say how important artists are in the world, because we play with language in a revolutionary way; we change the story. We interrupt the natural progression of cultural ideas because we see where they’re headed. Artists scrutinize the logical conclusion of illogical intentions of society, whether they be political, economic, or social.
But, marketers of capitalist goods know this best: how to create a language like architecture within a consumer’s psyche. Psychologists, psychiatrists, and pharmaceutical companies also all know this idea very well. They all know the language we use to speak to ourselves and to each other can make them a billion—or break their bank if a different song catches on.
Sometimes I think about this dynamic of our world, our ailing culture, and think there are so many to blame that there really is no one to blame. Corrupt languages lead to corrupt hearts, and access to empowering, compassionate narratives is not at all abundant or easy to find. In fact, I think we’ve lost access to these narratives of compassion for suffering and grief in day-to-day life and in institutional structures for so long that even if we heard them now, many would not be able to hear them at all.
Those who control the language in our lives have power they do not wish to lose, making breaking free from their words feel like a Mt. Everest of a task. The art of constructing stories can be a deeply profound intelligence of gain and greed—or it can be a revolutionary path to freedom.
The cultural systems that we live within, including the mental health care systems and structures, exist as they do because of the stories we choose to tell each other and ourselves—the words we use, the truths those in power bend to their singular aims, and the stories we choose to believe, for whatever reason. And, in the end, what we do not trust about our own stories—our own languages—which are so beautifully diverse, powerful and grounded in our basic knowledge of ourselves, opens the gate for those who gain from oppressing others.
Three words became the foundation of the new architecture of language in my mind, an architecture of empowerment—a cathedral of language towards my own worth.
Recovery, choice and diversity.
Nothing I am going to say about these three words and their impact on me has not been said by other psychiatric survivors, human rights activists, mad liberators, or in study after study. Even the WHO has said as much. But still, there is a void between the truth of this being said and it being heard—without the reactive insecurity of the psychiatric industry, and the resistance to relinquishing any power the current paradigm wields (or the financial gain it offers those who toe the medical model line)—so it gets said over and over again. And honestly, it feels like such an exhausting repetition and an extremely painful helplessness.
“Broken” vs “Recovery”
I started to see so clearly that the story I was told about the “chemical imbalance” in my brain not only was never proven, but—whether there was a seed of truth in it or not—it served most effectively to instill self-blame. Not only for what had happened to me prior to psychiatry, but for the harm that was done to me by psychiatry. “Permanently Broken” meant that I was asked to ignore what was wrong with the world around me and accept that the problem lay within me. This was so effective that I didn’t speak about my psychiatric or family trauma until I was 40 years old. I believed the medical model, and that created silence around everything else that caused my pain.
How can such a model of healing so completely and immediately circumvent, deny, and block—with a sea wall miles high—the actual path we’ve always known leads to real emotional healing? That path has never been to stay silent, ignorant of your truths, and most definitely never involved learning to disdain and try to eradicate them. This has never been how human beings heal from sorrow and suffering. Never.
So, how did I make such a mistake? Fall for something so against our species and my own intuition about the nature of healing? How did I replace the truth with the destroyer of it? At 21, I saw no way out of the confusion that tortured me and I took the only thing that was offered. And, having been encouraged in so many other ways to accept harm as a young woman, even to turn the harms of others against me into self-blame, it was the path of least resistance to believe. The hardest thing to wake from is the trance of a good story, and the medical model is a compelling tale.
For so long I thought this “permanent brokenness” was my fault. Until one day I googled “trauma from mental hospitalizations” and found the Icarus Project (as it was named then). Now it is called Fireweed Collective. My language finally began to include the words “recovery is possible.” Even from what is called Bipolar. Having had spent years suicidal, I was finally able to recognize that I was harmed by psychiatry, which also opened the door to explore the impact of marijuana and alcohol use and an emotionally turbulent childhood.
Slowly, a new language emerged from this root change in the words I used, revealing to me that the word “broken” was between me and the word “beautiful.” For some it is not and I have respect for how each of us find empowerment. But for me, I was so tired of feeling so broken. I didn’t want to keep feeling broken.
“Broken” stopped me from being able to see that there was some way to become free from my pain, even within any limitations that were natural within me. Each of us, I believe, deals with some constellation of limitations—that is human—and I saw how much ability is culturally defined, how the human rights of the disabled and different are slickly denied with languages of “brokenness.”
The trick for me became starting to look at what was broken around me—the economic, cultural, healthcare, educational, and family systems—and how these dysfunctional “broken” things projected their brokenness onto me. I realized I was a kind of patsy. For all these failures of those too frightened to take accountability, I paid the price. And as a white woman, I knew, too, that I got off easy.
And in essence I ripped the fault from my own body and placed it on the table to investigate it. In this process I learned a new way to speak about who I was and what happened to me.
As soon as I started learning a language that included the word “recovery” at the root, I could see the humanity of suffering as I did, perceiving as I did the “normalcy” of pain and extreme reactions to it. I began to see that there was a different way to live, a path to healing. I started seeing clearly that what had happened to me in psychiatric care, down to the words they used, added up to abuse—to violence.
“Disease” vs “Diversity”
Another word that started changing for me was the label of “disease” to describe my experiences, which included voices, altered states, and extreme depressions. “Disease” is a word that lives perhaps on the second floor of the architecture of psychiatric language. A bit less basic to understanding oneself than the more emotionally laden word “broken” that breathes self-blame and self-loathing into all the walls.
It was when I started moving towards “diversity” instead of “disease” that I became free to ask myself, “Can I be me in this world without medication?” Really wonder if that could happen. Can I see beauty instead of disease in my experiences and find other ways to manage what others deemed inadmissible?
And I found that with this intention, my symptoms became more and more manageable, changeable, and influenceable. I was no longer afraid of them, no longer helpless to change them, merely because the language of permanent dysfunction, permanent damage no longer made sense. What started to make more sense was that because of the pain, neglect and trauma I had experienced, I had a hard time coping, but could learn how to heal.
“Difference is not disease” became my motto and I sought out ways I could learn to adapt to my diversity without medication, which meant several things. Practical things like earplugs when I was overwhelmed by sound; peer support; speaking my truth; as well as other soul-sustaining things like seeking out the stories of others, the successes of others, the poetry, art, and myths of the past that held the experiences of altered states and suffering with honor instead of disdain, that let sorrow teach instead of terrorize, let altered states have meaning beyond science and disease, far, far beyond it. Absolutely beyond its reach.
And with my own art practice, I began to write my own song, create my own language—rewrite the story.
“Powerless” to “Choice”
So many missing pieces of care lead to the acuteness of my altered states at 21 (and the year and a half before that, and then the 20 years after). The missing piece of language, the more positive stories from elders, the missing wisdom and validation, the missing pieces of all the things that happened to me that were shrouded in silence and shame all added up to powerlessness to choose or to change.
In another world, another culture, another life, I may have gotten the language, the stories, and the support I needed to deal with voices hearing and altered states before I collapsed into the isolation, chaos, and confusion that led me to psychiatry. Perhaps I could have lived without psychiatric medication. But as I write this today, it seems not in this life, not in this culture, not in this world. Although, that may change as I further build the architecture of support and wisdom in my life.
About three years after I began my journey coming off psychiatric medication, the honest to god cruelest and most dangerous missing piece was not having medical support as I did this. When I realized the withdrawal, which means the dependence my body had acquired to a chemical I no longer needed, became too much for me to bear, having been diagnosed with disabling chronic vestibular migraines and chronic fatigue syndrome—I was confronted with the fact that I had to, in order to survive, go back on a small amount of Vraylar for a bit. It took me an entire year to get down to being off it, and a month and a half to realize the withdrawal was killing me and ruining my life.
I had always said my goal was wellness, and I was no longer well enough to even get well.
But, the most important thing about this part of my journey in changing the language of my life was that in this moment I regained the power to choose, regained the meaning of sovereignty over my own mind and body. And in the end, it became a realization that I had to use my oppressors’ tool, my abusers’ weapon, to cope with the harm they had done to me. For months I had been working with removing the baggage of harm that came with those pills, and somehow the night I decided to take them again I had turned harm into healing. It felt like a necessary choice, even if I knew what it meant and all the risks that I knew came with it. I made that choice. I put that pill into my body and no one forced or coerced me. That was my key to healing.
I was a survivor of the violence of psychiatry, and I had to accept that my body itself was not the same. I even had to accept that I had to take a small amount of a ‘cure’ that almost killed me, just to survive the withdrawal again when I’m stronger. Or perhaps I’ll need to stay on them—the damage done might be too great. I always knew that I was not returning to the Karin before psychiatry. I was returning to a Karin mangled by involuntary and irresponsible psychiatric care and that was something I might have to accept.
That it was my choice was what made it healing. I deserved life. I had fought so hard for it. And only I could figure out how to feel good about the choice I made, feel happy about using my oppressors’ tool to survive my oppressors’ harm. And that was my choice. I couldn’t sing my song at all if I could not forgive, if I let resentment kill the bird within. All that would have been left was the prison of a song that was not mine.
When I looked up from the darkness three years ago and found the courage to live my authentic truth, I waged a rebellion against the song of psychiatry. I had to do everything I had done, the hell of withdrawal, the lost relationships and the tension with my world, to get to that moment where I transmuted harm into healing, and I don’t regret one moment of it. Discovering all of this at 42 feels like I’m quite late for my appointment with life, but I will do whatever it takes to live what’s left with heart and with courage.
There is no change in the world, or inside ourselves, unless the story changes, the song takes on a different melody. And the only way to change a story is to change the language.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.