Silent hours unfolded as I devoured the words, a symphonic consciousness crescendoing as door after door of new awareness opened inside of me. It was May, 2010, and I was alone in a Vermont hotel room, as I’d let my parents know they should go on without me to meet my sister and her friends for dinner to celebrate the end of their junior year in college. Skipping a social event was nothing new to me by this point; in fact, my family had grown to expect it. The inevitable, “How have you been? What are you doing in life?” had become too much to bear in social situations, those words a stab in the gut, their sharp ferocity leaving me aching for hours afterwards. The only answers I had to offer were entirely tied into my identity as a person with mental illness— Bipolar disorder and Borderline personality disorder, specifically. Indeed, it had become all I was.
How have I been, you ask? You’d really like to know?
I have not been well. In fact, over the last ten years, I’ve been getting progressively worse, and these last four years in particular have sent me further down than I ever thought was humanly possible. In this time, I’ve thought about dying on an almost daily basis, the thoughts invading me with the force of a powerful army. For whatever unfortunate reason, I failed at trying to kill myself a year and a half ago, and I’ve been stuck in the same life ever since. To be honest, the only thing that’s kept me going are these thoughts of death, which I know is waiting patiently for me when I finally decide life is too much, and that my mental illness is too severe.
I’m currently on six psychiatric medications, each of which I’m told serves a very important purpose— Lithium for my mania, Lamictal for mood stabilization, Abilify for my mania and mixed episodes, Effexor for my depression, Ativan for my anxiety and to help me sleep, and Seroquel when I’m overwhelmed with thoughts of suicide and need to sedate myself quickly. They’ve never worked, ever, and I’ve been told that I’m very treatment resistant. Although they keep upping my doses, I’ve only gotten worse.
I don’t remember what it is like to not be medicated, to not have to pour the pills out into the palm of my hand every morning and every night and swallow them down, a residue of bitterness left at the back of my throat. I’ve been on them consistently for ten years, and on and off for three years before that, so I have had a relationship with them since the age of fourteen. I’d imagine I’d feel naked if I went anywhere without them. They have become my security blanket, although I’m no longer sure what they’re keeping me safe from.
So, you’d like to know what I’m doing in my life? Well, I went inpatient on a locked psychiatric unit in New York back in February of this year after coming really close to killing myself. I guess you could say I was glad I asked for help instead of going through with the suicide, so that I could give life another shot, although there are moments when I’m not so sure. That hospital discharged me to a substance abuse day program at the same Hospital on the Hill I went to back in 2008, up in the Boston area, after my suicide attempt. That program didn’t go so well, and I was kindly escorted by hospital security back to that locked unit, where I spent a little time.
Since leaving that unit, I’ve been spending my days— five days a week, usually from 9AM until 4PM— at the hospital’s Intensive Outpatient Program for Borderline personality disorder. I go to groups, individual therapy, and to the occasional meeting with my treatment team, which consists of seven doctors, social workers, and psychologists who meet about me first and then invite me join them afterwards so that they can tell me what I need, since I have no idea what that is, myself. It’s always hard to wait patiently on the sofa beneath the old mahogany paneled walls in the hallway of the Administration Building, staring at that closed door, knowing that they’re talking about me in there, but I’ve been told this program is the best in the country for treating Borderline personality disorder, so who am I to say anything?
I’ve been staying with my aunt and uncle in the suburbs of Boston since leaving the inpatient unit because I can’t handle living alone. I dread the nights, when I am faced with myself, my racing thoughts, and my profound self-hatred, and I watch hour upon hour of Law & Order or South Park on my laptop until my Ativan carries me into deep, dreamless sleep. Waking up every morning to shower, dress, and go to treatment is a challenging task, because I’m still not sure I really see a point to all of this, since I’ll have these issues for the rest of my life. Other than my fellow patients at treatment, and the people I see nightly at meetings I’m attending to help me stay sober, I have no friends, because it’s too exhausting to put the front up that I’m anywhere near being normal.
I’ve never really thought about working towards a career, as I stopped thinking I had it in me to be successful long ago; it also didn’t help that doctors have always told me to be sure to set “realistic expectations” for myself, given the severity of my Bipolar disorder. I’ve haven’t thought about getting into a healthy relationship with a guy because I stopped thinking I deserved it a long time ago, and when I look around at people my age who are getting married, having children, excelling at work, and settling into homes, I am utterly perplexed. I sometimes wonder if I’m really an alien among these healthy, happy, functioning human beings, as I am constantly disoriented and profoundly confused by this thing called life.
Is that a good enough answer to your question?
With that as my truth— this massive secret of who I really was— I couldn’t bear to pretend any more, to diligently weave fabrications with acute precision, vigilant about getting straight which story I told to whom, and when. The contrast between the person most of the outside world probably saw me as and the person known by my family and by the countless psychiatrists, psychologists, social workers, and mental health workers I’d come to know over the decade I’d spent in shrink’s offices, day programs, partial hospital programs, and locked psych wards, was too stark. Tonight, however, these concerns hadn’t even crossed my mind. Alone, hidden underneath my usual baggy sweatpants and hooded sweatshirt, I had stayed behind for a very different reason. I simply couldn’t stop reading.
In the past few years, the vast majority of the books I’d read were of the young adult genre, and the only times I’d read at all were during stays on psych wards, my debilitated concentration coming together just enough to make a meager attempt here and there at breaking up the monotony of being on a locked ward. My hands hadn’t held a piece of non-fiction since college, other than a failed attempt at Malcolm Gladwell’s The Tipping Point while on the Short Term Unit of the Hospital on the Hill in 2008. I simply couldn’t absorb the words, my eyes going back to the beginning of each paragraph three times before I could move on to the next. And here I was, caressing the red dustcover, while my eyes, hungry fiends after years of starvation, digested each and every word of this book I’d accidentally discovered earlier that afternoon.
I’d been wandering around downtown, baffled by the normality and carefree happiness that was everywhere— families excited for summer and proud of their accomplished college grads, yellow labs in bandanas panting in the heat, children in matching Patagonia shorts. When I chose to go out in public, which rarely happened anymore, I couldn’t help but analyze the humanity I’d become so separated from, studying it as if through a glass observation window, fantasizing that one day I’d get so good at pretending I’d maybe have a shot at becoming like everyone else.
At the sight of a bookstore on the next block, my heart flittered; rooms of books were one of the few spaces that provided a temporary sense of relief and escape. I’d trace the spines of soft covers with the tips of my fingers, pulling them out here and there to push my thumb through their pages and inhale the sharp smell of crisp new paper, and imagine myself reading them at home in a comfy chair by a fire, a warm blanket on my lap, a cup of tea at my side. This scene hadn’t existed beyond the confines of my mind in a long time, and I wasn’t sure it ever would, but just the thought of it was enough to let me sigh a deep sigh.
Perusing the shelves, I came to the newly released books, which lay flat on an unfinished cedar display shelf, their covers shining bright under fluorescent lights. As my eyes scanned the images, I locked eyes with a face looking back at me. His eyes peeked out from just above the author’s name, and I was sure I saw pain in them. The top of his bald head was separated by dotted lines, which carved the skin up into designated sections, each labeled with one word. My jaw dropped as I read them. I knew them well, better than most, probably, and some of them I said aloud to myself every day.
Tegretol, Lamictal, Prozac, Klonopin, Wellbutrin, Risperdal, Zyprexa, Xanax, Lithium, Ritalin.
Pharmaceutical drug names for medications that treat mental illness, two of which I had.
What is this book? I thought to myself, heart pounding, as time slowed to a halt around me. Everything on my visual periphery fell away, until the book was the only thing left in my line of sight. I felt a powerful sense that this was predetermined, that this was meant to happen. I hadn’t felt something like this in a long time.
These words— these accumulations of letters arranged strategically by marketing divisions of pharmaceutical companies— marked the destiny of this man, whose eyes were searching for mine, and I realized in a profound moment that I was looking at myself. I now understood the ache I saw, for I had it too, and eight of these ten drugs— two of them in my blood stream in that very moment— had been shaping my own fate since the age of fourteen. I had no idea what the book was about, but without a thought, I had it in my hand, got into the check out line, paid, and went straight back to the hotel.
A few weeks earlier, I’d mustered up any inner confidence I could find to raise the issue of coming off my psychiatric medications with my psychopharmacologist, Ben, who was one of the doctors on my treatment team. Although he initially pushed back, he was willing to listen to me. I told him that since getting sober, my life on the outside had gotten a little more manageable and that I sensed a slight forward momentum, something I hadn’t felt in as long as I could remember. Although I still had no idea of who I was and loathed the person I saw in the mirror, there was something inside of me that had ignited, something deep in my gut that told me if I was ever to have a shot at putting together the scattered pieces of who I was, I had to come off of my medications. I was tired of wondering, “Is it me, or my meds?” any time I thought a thought, or felt a feeling. I was tired of feeling like I was turning my agency over to these inanimate pills that had ruled my life for over a decade. I was tired of the side effects, of the lethargy during the day and the insomnia at night, of the sense that I was separated from the world around me and completely disconnected from any sense of my self.
I simply couldn’t go on this way any longer, and had become ready to begin what I was sure would be the most difficult journey I would ever face. I was ready to discover who I really was, beneath the stacks of prescription sheets that had been ripped off and handed to me and the tens of thousands of tiny capsules and pills that had dissolved into my bloodstream over all those years and shaped me into the person I had become— a zombie, and a total stranger to myself.
Just weeks after this conversation with Ben, who had told me gently that we could reassess the topic in a month’s time, I was holding a book that carried a message I had been completely unaware of until that very moment. I had accidentally discovered Anatomy of an Epidemic, and it was about to transform the way I saw myself, my Bipolar disorder, my relationship to psychiatry, and my future.
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.
What a powerful story! I identify with so much of what you have written – who are we without all these medications? There was a time when I didn’t take any medications at all and somehow I muddled through my life. And now that I have the knowledge I do about my illness and the coping skills I’ve learned, I know I could make it without meds, or at least do my very best to try to do so, and that’s what I want. I’m dragging my psychiatrist along by the neck because he doesn’t want to let go of the idea that my illness is so “brittle” and that I can’t make it without meds, but I’m going to get there and you’ve really inspired me. Thank you! I’m your friend in the grand scheme of things, so remember that.
All the best,
My friend, thank you for the comment and the support! I think it’s awesome you’re reaching a point of readiness to come off your meds, and that you’re not letting your psychiatrist’s resistance hold you back. Research shows that a doctor’s support is not required to successfully come off. To learn more about this check out the UK’s MIND study on coming off psychiatric drugs. Here’s a link: http://www.theicarusproject.net/files/MINDComingOffStudy.pdf. Speaking for myself, my withdrawal was successful for reasons entirely separate from psychiatry… This part of my story, of course, has not yet been written about here. 🙂
I’m curious to learn more about your conceptualization of and relationship to your “illness”. I believed I had a “mental illness” for many years, and that something was biologically wrong with me. Because biomedicine has tremendous power over society, it is easy to become enchanted by its language and tricked into believing that it is somehow more valid and more real than basic human language. Speaking for myself, I used to think I needed a medical explanation of what I was going through in order for it to be seen as legitimate, powerful, and real.
Of course, this was reaffirmed by the many psychiatrists, and often psychologists and other mental health providers, who all helped perpetuate this belief that my emotional struggles were symptomatic of disease– simply because the Diagnostic and Statistical Manual (DSM) said it was so– and that only medications and effective psychotherapy could successfully treat this life-long condition if I wanted a shot at effectively ‘managing’ my life.
Today, based on everything I’ve learned through educating myself with resources and with the guidance of the many inspiring people in this civil rights movement, I know that none of this was ever or is currently accurate information. I no longer see emotions or thoughts as symptoms of physical “illness”, and I say this with confidence because there is no such evidence in existence today proving the biological nature of extreme emotional and cognitive states.
I see everything I went through as fundamentally human, not pathological, and I see each and every person who has ever been labeled “mentally ill” in just the same way– as human beings, with their own unique emotional and cognitive experiences of their own unique realities. I do not believe that any person, let alone any institution, has the right to decide what is ‘normal’ emotional existence and what is not.
Have you ever read Joanna Moncrief’s “The Myth of the Chemical Cure”? I suggest it as a great starting place if you’re interested in educating yourself about the validity (or lack thereof) of biomedical psychiatry. And, please feel free to email me privately if you’d like to continue the conversation ([email protected]). My transition from thinking about myself in terms of words like “illness”, “symptoms”, “disease”, “imbalanced”, etc. etc. did not happen overnight, nor was it easy. I can say today that I am completely free from the institution of psychiatry– the medications, the psychiatric labels, the psychiatric “treatment”– and I am more contented and connected to myself than I’ve ever been before.
Be well, and good luck on your journey,
Wow. Oh wow. Isn’t it astounding to think that these hospitals and doctors and treatment centers are on this very day giving another bright, beautiful young girl a lifelong sentence of bipolar with borderline personality disorder?
I was a Sophomore in college when I got my bipolar with borderline personality disorder. I was diagnosed at McLean; I went from no drug history to a three drug regimen overnight. My parents were informed I had a lifelong illness with no known cure. My dad was convinced; my mom had severe reservations. I don’t know what I thought, didn’t the doctors know better than me? It did not seem to matter to me what I thought. So that plus the drugs were my constant enduring reality for my twenties. Sound familiar?
After a certain amount of time passed which I cannot pin down in quantitative terms, I know longer thought about health or wellness. I was in my routine and living my “normal”.
My mom encouraged me to go on a religious pilgrimage to India in January of 2011 with other Catholics. The first week would be a week-long silent retreat at the Divine Retreat Centre (the largest Catholic retreat center in the world) in Potta. The next two weeks would be spent traveling five different cities around India visiting various churches and shrines of Saints in addition to regular tourist fare.
I didn’t want to go (why spend so much time around holy types who tell you Jesus can heal your ills?). My psychiatrist was my umbilical cord, so like a good patient I asked her what I should do. She said, “I support you in your decision, either way.” I didn’t think I would go. (It didn’t matter that the visa, the plane, the trip had been long paid for… I didn’t feel like it.) I had ordered a supplement through the mail upon my shrink’s recommendation a week prior to leaving. A strange thing came in the mail with the supplement: a complimentary full-size bar of soap. It was a brand I didn’t recognize, “Pears”, so I looked on the box for where it was from, and what do you know? Made in India.
This, a bar of soap, convinced me to take a pilgrimage to India. My doc told me to double my Abilify dose to help me along the way (in addition, of course, to the Klonopin, Adderall, Prozac, Metformin, Synthroid, Cortef, hormone pills, and many, many supplements).
In India, a day after the week-long retreat we were introduced to a layman named Anthony. He did not speak much English. He spoke the native dialect of Kerala, Malayalam. He was a working-class older man, married with grown kids, who once had been a hard drug addict. Through the grace of God, he had converted his life. He now knew his bible, lived his faith, and spent several hours a day in prayer. Through prayer, he would receive messages (or inner locutions) to give out to everyone of us in the group. He could give names, dates, unspoken dreams, promises/prayers made to God, motives of family members back home, etc. He mostly told us the difficult things we did not readily want to hear: the aspects of our lives that could be improved.
After telling me some absolutely true details of my life, he told me the heresy of heresies, “There is nothing wrong with you.” I informed him that I was severely bipolar. He took my answer and started praying for a message to give me. He came back with, “No, there is nothing wrong with you.”
I came back in early February of 2011. I started tapering (with no formal support, no tapering guides, no internet research) on March 9, 2011, Ash Wednesday in the Catholic calendar. I got rid of everything. No thyroid problem (originally triggered from Lithium), no metabolic problem (cautionary for antipsychotic use), no hormonal imbalance, no nutritional problems, no allergies, no more hand trembling, no pills of any kind whatsoever. The Klonopin was the hardest and my last dose was in the end of June 2011.
I have exactly one year of sobriety this month after twelve heavily medicated years of existential horror. It has been a blessed but sometimes angry year. I went back to college last Fall and am doing well in my current summer classes. I have my volunteer work. I am running (tomorrow wake up at 6) and in training for the half-marathon in October. I have significantly improved relations with my family and new friends. I have a true faith life. My life is full.
I had thought I was alone. I believed that nobody could be as duped as I had been duped. Nobody else could down $200,000 in pills on a behavioral illness. Nobody else could have traveled (I went to five different states) to so many medical clinics and consulted so many doctors without ever having a medical disease.
I discovered Whitaker’s book in February. I discovered your Occupy APA speech in March as the item that drew me to this MIA site for the first time. I was not alone.
Your voice as a writer has, most especially, helped me to process and understand my experiences. You have helped me. Thank you so much, Laura! It is with such joy that I write you now. I will be looking up Joanna Moncrief. I still have much to learn from you and from MIA.
I’m so grateful for my relative youth, my health, and my life. I have new goals and aspirations. I’m also looking forward to following the wonderful things you do with your life in advocacy.
Your friend in craziness through the first decade of the 21st century and in wellness now,
Your comment is beyond beautiful. To see that you write from a place of joy fills me with my own— isn’t it miraculous to see the ways in which intense emotional and psychological obstacles end up becoming gifts, once we’re no longer mired in them and emerge on the other side as new, connected, and joyous people?
One line, in particular, jumped out at me, and I had to re-read it several times because it hit me so powerfully: “He mostly told us the difficult things we did not readily want to hear: the aspects of our lives that could be improved…”
How is it that this was so true for both of us? That the thought of improvement, of healing, of finding balance and contentedness and health, had become something we cringed at the thought of? Yet, that’s exactly what happened, isn’t it? I so vividly remember being at my own crossroads— faced with the decision of whether to continue on in the dark, numb, and imprisoned way I was, or cling tightly to that tiny part of my gut that said, “Laura, you need to leave these medications and these doctors behind and find yourself”, which meant heading towards the unknown… the un-experienced… the unpredictable path of… healing. Health. Inner peace. Fullness. Faith in myself and in life. Those concepts had become so foreign to me, both because I was encouraged to feel like they were strangers by my ‘treaters’, who wanted me to focus instead on ‘illness management’, and because I convinced myself that it was easier to simply surrender.
It is that second reason that perplexes me most today— that I became so entrenched in self-pathologization that there was an extended period of time during which I no longer WANTED to get well. I identified as mentally ill and mentally ill alone, my sense of self condensing and compressing into such a compact little ball of intense hopelessness that I nearly collapsed in on myself and turned into a black hole. I know today that at the root of it was fear, fear, and more fear, but nonetheless, to get to a point where I’d begun to romanticize being “the 21st century Susannah Kaysen” was quite a feat. Indeed, I would have been insulted had my path crossed with Anthony’s. Insulted at the thought of self-improvement. At the statement that nothing was wrong with me. It never ceases to amaze me.
And here we both are, free from the psychiatric grip, connected to each other through these shared experiences, and writing our stories so that others no longer have to feel alone. It is amazingly simple and uncomplicated, yet in my experience, yields more fruit than the most highly trained, highly educated, and highly accomplished psychiatrists and psychologists at that hospital on the hill whose tunnels we’ve both walked could have produced. We are simply being human— experiencing emotions, telling stories about what it’s like to experience these emotions, and connecting through these stories. Man has been doing it since the beginning of mankind, yet it seems to have been forgotten in much of modern society.
Emily, I hope you continue to share your story, because it is vital to this civil rights movement. That you were able to successfully come off of psychiatric drugs with such little support is a testament to your personal strength and to a human determination that I believe exists in each and every one of us— it’s just a matter of awakening to it. Live your full life to the fullest, and do stay in touch!
My Friend Laura,
I love your detailed responses. I thank you for the encouragement to everyone to tell their stories.
As the small part of my story that I wrote here suggests, it took a trip to India to convince me that I was not bipolar. As romantic as the idea of a spiritual awakening in India may sound, it was not at all what I wanted to hear.
I know that I was loathe to go on that trip because I did not want any revelations of truth to burst my bubble. I lived an isolated life that did not seek truth. I wonder if I had read Whitaker at an earlier point, might I have been receptive to the overall premise? What is the kindest, most charitable way to suggest to a person that the the $400,000 treatment they had sought over 12 years was a fabrication to subvert that person’s health and well-being for a profit? (In Economics, this is the sunk-cost argument. In AA, this is the “If you’re digging a hole, quit digging.” metaphor.) What is the kindest, most charitable way to suggest to a person that they are in fact a legal, prescription drug addict? It did not feel kind and it did not feel charitable to be undeniably confronted with such a monumental truth. Yet, the truth crept into my heart and mind and made a home there.
As much as the truth hurt, and as much as the drug withdrawal hurt, it was the best thing that ever happened to me. It saved my life. I may only be one small person in a world of 7 Billion but my life means something to me and those that love me.
What I could not see through my illness paradigm and my illness management of drugging myself senseless (and I mean that literally!) was that sorrow and suffering (the lot of every human throughout all humankind) have meaning. When I accepted the purpose of suffering in my life, and meditated with that, I no longer felt like such a hostage of fear to the inevitable events of suffering.
When you tell others your story, I see that many react with: Oh, my, such suffering!
And then, you tell them: Yes, it was. But it made me who I am today as someone whose life has purpose and meaning.
I love this. I absolutely love this message and I love you for sending it.
Every life has purpose and meaning. Every life has suffering. Suffering has a place as part of the meaning and purpose in life.
A psychiatrist is very good at trivializing the value of human life and devaluing the possible purpose of suffering in a person’s life. Because the institution of psychiatry undermines and cripples the human spirit to overcome suffering, I do believe it is a civil rights issue.
Laura, I know that for me to live my “full” life to the fullest, I need to stay far away from the mental health field! But I also know, we need some good people in the field to get about the business of reform. I thank God for you and your witness. I want the outside world to know about the lonely tunnels of the hospital on the hill! I want them to know that hardworking, honest, sincere people get very lost in them.
It is a most engaging prospect to stay in touch! I will follow your story with the joy of knowing the outcome: truth-bearer! I will continue to explore mine (all those wasted, drugged years for what?!).
To those still struggling, I know they cannot imagine how good it feels to be alive and well on the other side. I pray to God that they persevere and that they make a way. I’m glad you are there to show a way.
P.S. As for me, I always had a fancy for being the 21st century Sylvia Plath. Does anybody retroactively assert her as untreated bipolar these days?
Goodness. Your writing is beautiful. Clear, precise and at the same time both moving and evocative. What a fantastic talent you have. Can’t wait to hear more of your inspirational story.
Thank you so much for your support– it means a lot to me. My writing, for the first time, is coming from a place deep within me that I was never able to connect to before because I was so blocked by the medications and the beliefs I had about my (lack of) capacity as a human being. Today, when I write, the words come from my heart and my inner-spirit, two forces I’d lost touch with back when I entered the mental health system at age fourteen. I am beyond grateful to have come back to a sense of self after all those years that I spent lost and disconnected.
Sending well wishes to you,
These people are legalized drug pushers.
“I’m currently on six psychiatric medications, each of which I’m told serves a very important purpose— Lithium for my mania, Lamictal for mood stabilization, Abilify for my mania and mixed episodes, Effexor for my depression, Ativan for my anxiety and to help me sleep.”
I was always struck by how against street drugs the doctors in my son’s programs were, while at the same time they were writing prescriptions for mind and body altering substances.
Thanks for telling your story.
Firstly, thanks for all you do to contribute to this movement– your family’s story is an important one.
And onto your comment, which is so shockingly true. Other than legal status, there is no difference between these drugs– they are psychoactive, and they are physiologically addictive. I am nearly two years off of psych drugs, and although I consider myself emotionally and psychologically healed from the withdrawal, my body is still struggling in many ways to find its balance, especially my endocrine and digestive systems. I am confident that the more I continue to focus on proper nutrition, exercise, healthy human relationships, and spirituality, the faster my body will right itself. I truly believe it will, even though I was medicated for over ten of my most important developmental years.
Each time I hear of another person who’s decided to start psychiatric drugs, my heart drops. While I do respect each person’s right to choose what he/she puts in his/her body, I believe that choice should be informed, and the vast majority of the people I know today who’ve begun these drugs are most surely not given full, accurate information, and thus, are not making an informed choice. I am full of faith in the Mad in America community and all the other powerful voices out there to carry the vital information that psychiatry willfully leaves out about what these drugs are really doing to the millions upon millions of people who take them. Once the word gets out at the mass level (which it will), we as a society must be prepared to take care of those who decide to come off and enter into the agonizing withdrawal that comes with that courageous decision.
Keep up all your work, Rossa. I am so grateful for it.
Your story is inspirational, thank you for sharing. To echo what others have said, your writing is amazing. And I am so glad that you and so many others found Anatomy of an Epidemic. It is having a profound effect for the better on so many people. Your experience and that of others responding to your story remind me of that old saying, “The truth shall set you free!” If I were infinitely rich I’d buy hundreds of copies of this book and I’d stand on the street corners and give them away to anyone who would take a copy!
Thanks so much for your support. When I read this, I had a wonderful mental image of you (although I don’t know what you look like) shouting from a high rooftop and tossing ‘Anatomy’ copies with little parachutes over the side to all the people below :).
I say this all the time, but I truly believe that the perpetuation of the paradigm of “mental illness” and its required pharmaceutical “treatment” is truly the biggest fraud in the world today. I feel compelled to share my story to show others out there who may feel like they’re alone in what they’re going through that they are far from it. It is vital that we all come together through these mutual experiences to accumulate enough evidence to expose this fraud at the international level, and not just in our own like-minded circles. I am connecting to this cause with a determination I’ve never felt for anything before, because I have faith in our capacity as a civil rights movement to make a change.
Maybe we should get a Kickstarter project going to fund buying thousands of ‘Anatomy’ copies and putting them in every public place we know!!!!
Thank you again for your support, Stephen. It keeps me feeling determined.
Lauren, I have read your journey with rapt attention. I am so glad that you have come through this nightmare and are now a happy contributing member of society.
That you are now speaking out and helping others speaks volumes for the type of person you have become.
I’m sorry, it’s Laura, not Lauren!!
Thanks so much for reading my story. All those years of feeling so disconnected had to happen for me to be a part of this cause, and writing here at Mad in America, so I am grateful for them. That being said, it feels better than anything else to be an emoting, thinking, independent human being today :).
It has always astounded me that a person could be receiving “treatment” for so long, be clearly deteriorating, and yet have the “professionals” continue to be somehow fully convinced that the “treatment” was helpful in some mysterious way. I’ve heard someone say, “She’s like this on the meds – think of what she’d look like OFF them!” But I’ve seen dozens of situations, maybe in the hundreds, where the person was no worse off and often far better off when they stopped.
If we went to a doctor with a sore knee, and a month or two later, despite treatment, the knee still hurt, was now swollen, back pain had developed, we’re now using crutches, have severe headaches, and are seriously depressed, even the most credulous among us would quickly conclude that THIS TREATMENT IS NOT WORKING! And yet somehow, psychiatric treatment is allowed to fail without blame. Anything good that happens is because of the drug. Anything bad that happens is because of the “disease.”
Laura, it was such a pleasure to meet you in Philadelphia and hear you speak, and I so appreciate you sharing your story. I totally agree with you and Emily’s Indian holy man – “There is nothing wrong with you.” There’s a lot wrong with a system that identifies any distress as being a disease. But even within the confines of its own warped belief system, shouldn’t psychiatry be able to acknowledge when a treatment isn’t helping? Apparently, such a thing never happens.
Thanks to you for sharing and to Bob’s book for helping make that possible!
Yes, it was so good to meet you in Philly, as well 🙂
And you are spot on about both psychiatry’s and much of society’s inability to see the forest for the trees when it comes to the relationship between psychopharmaceutical “treatment” and emotional distress. Until reading ‘Anatomy’, the thought had never once crossed my mind that the medication I’d been on for so long might actually be making me worse, despite the fact that the timeline of my downward spiral perfectly correlated with my introduction to ‘being bipolar’ and taking all the drugs that came along with it. Now, it’s like, DUH!! But it wasn’t that obvious to me before accidentally happening upon ‘Anatomy’.
The majority of the time I make this point to people outside of our civil rights movement, they look at me with skepticism, and I can see their wheels turning as they decide whether I’m a conspiracy theorist and fanatic, or just plain crazy. I think a lot of it is a defense mechanism, whether because they have their own personal relationship to psychiatric drugs or because they have someone close to them who does (which is really scary to think about– that there are so many people out there connected to these drugs that it’s hard to meet someone who has no personal tie to them). Denial is a powerful thing; I know from firsthand experience that it is really painful and challenging to uproot a belief system that has grown its foundations into the very nature of who someone is.
Whether it’s the psychiatrists, whose very existence is inextricably tied to the need for their to be a biological basis to emotional distress, or the people with psychiatric diagnoses, who have worked hard to accept their fate as being biologically imbalanced and simply can’t face the fact that maybe it isn’t so, all parties involved have high stakes in the game. The stakes in my own game were high when I walked through the fear of the unknown– of a life without psychiatry– but boy am I glad I made that choice. I get the chills when I think about where I’d be today if I’d chosen to stay where I was, “mentally ill” and medicated, subservient to my “treaters” and my IOP and the hospital on which I relied to keep me safe from myself. The word “safety” hasn’t crossed my mind since, and it feels good to be able to say that.
We need simple analogies like yours about the swollen knee to carry the powerful message of just how backwards, ridiculous, and absolutely destructive the system of psychiatric “care” is today to people who haven’t been exposed to resources like ‘Anatomy’, and we need to keep saying it, re-saying it, and re-saying it again, regardless of whether we sound like broken records. We will reach a tipping point when we get enough of a voice; psychiatry and society at large can’t go on with their hands covering their ears forever, stomping their feet and shaking their heads. Thanks for your support and your part in this movement, Steve, and I look forward to seeing you soon, I hope!
A hopeful chapter Laura! All the best from Ohio
Thanks, David! Sending my best to you too 🙂
Laura, thank you for having the courage to tell such a courageous story.
Like you my life also changed when I read Anatomy of an Epidemic. I was however unable to obtain any help or support for me to wean myself of the med’s, and in fact lost all the support I had ever had. I spent a long time wondering if I had made the right decision and there are times when I still think that. I totally understand people who do not do it. In many cases I do not think it is because they do not know the truth, but rather because of what they will lose if they do. It is also incredibly hard to wean off med’s when you are on high dosages and cannot get lower dosage tablets prescribed.
I entered the mental health system some 20 years ago, when I left the most abusive home possible. Rather than consider that my problems were due to decades of abuse, they instead labelled me with brain based diseases. I should add my main diagnosis was actually PTSD, but the treatment of choice was cocktails of medication. I was told that PTSD was caused by an underlying genetic condition, and the stress was just the icing on the cake!! But of course once you have one diagnosis, another has to come along too, and in the end I had over 20 diagnoses, and most of them ALL at the same time!!
Any therapy I was offered was very strict Cognitive Behavioural Therapy, which said I had to ignore my past and just think properly. Problem was one can only think what they have experienced, and I had nothing to think positively about. I was homeless, and the only way I had a place to even sleep was in mental health group homes.
When I finally managed to find my own accommodation I had no one in my life. I had left my whole life, to leave the abuse and no is safe to be in contact with. My name has had to be changed. I also have a total distrust of people, due primarily to the abuse and then the subsequent systems abuse, which simply reinforced everything I had experienced as a child.
When I raised the prospect of going off medication, in fact I raised the prospect of lowering the doses, not going off; I thought lowering was safer, I was told I would lose all support. I had workers who visited me regularly, who helped with many things. There were drop in centres I could attend, etc. I had a psychiatrist, psychologist and family doctor. The ONLY people who even knew I was alive were the professionals who treated me. And I lost them all. I tried to hide the fact that I was going off the med’s, but my physical changes, weight loss (the gain caused my Olanzapine) and my being awake, was not able to be hidden. In the end I was kicked out from all of them. Even the family doctor refused to have anything to do with me. I have been banned from every drop in centre in my state, as I could communicate with other people!!
On the one hand I know that going off the med’s was the best thing I ever did, but equally there are times when I question it. If I had family support or even friends it would be different. If I lived in a country that had survivor groups it might be possible. I have no such thing. And of course I still have the lifetime legacy of the abuse I suffer. But now that I am alone and of course awake I am finding other things. I now have a massage every week, instead of therapy or medication!! And that has been the most healing thing I ever did. I struggled with it at first and had to push myself to go, but I now long for it, and plan my week around it. I am doing voluntary work, looking for paid work and planning on going back to school. I am even beginning to establish relationships with some people at the place I do voluntary work.
I think on the one hand the belief that these drugs will work is huge. But there is also a large group of people who have nothing but the system and losing that is simply way too scary. I have communicated with many of them online. They know the truth, but the fear of the loss is too great. We do not develop these problems for no reason and many of us ended up in the system due to abuse. We went looking for help and only got more abuse. And then they wonder why we didn’t want to live.
While my story is very different I relate very strongly with some things you write about. The doctors telling me I can’t do anything and to not have hopes or goals. Then telling me I was silly for wanting to die??!! Those things have never quite made sense to me. How it is they cannot comprehend that they make us want to die is beyond me. I was constantly told I had a really bad case and was many times told I was treatment resistant. Not aware of anyone who is not treatment resistant? Can’t treat something that does not exist!! Still trying to work out how a drug that supposedly stopped voices in the head (antipsychotics) can supposedly treat almost every other condition that exists!! And of course the wonderful team meetings in which a bunch of so called experts talk about me, without me, and then tell me what I need to do, to fix myself.
Diagnosis for me is a double edge sword. I certainly do not agree with the basis of it and know full well it does not exist. Equally though I long for something to explain the pain and trauma that I have been through, although I know better than anyone that a word labelling me as defective can’t do that. In fact no word can do that. At present though I require the diagnosis in order to get government benefits and without it, I would be dead. Sad the levels a person has to go to, in order to eat.
Thanks so much for your comment. You add very important perspective to the decision-making process around coming off of psychiatric drugs. You said, ‘I totally understand people who do not do it. In many cases I do not think it is because they do not know the truth, but rather because of what they will lose if they do’, and I’m glad you said it. Learning the Truth might not, for everyone, mean deciding to come off psychiatric drugs, especially given the current absence of structure in place to support people who decide to come off. The decision is undoubtedly a very scary one to make, and one whose benefits, like you suggest, may not outweigh the costs. I hope that as we continue the fight to dismantle the psychiatric system and create alternatives, this cost-benefit analysis for people will shift, with the benefits outweighing the costs. I have faith that this can and will happen.
Belinda, your story makes clear your tremendous strength that you decided, despite knowing all the loss and isolation you’d experience as a direct result, to come off of psychiatric drugs. I think your experience of getting to a point at which the only support you had in your life came from your mental health providers is a very common one, and creates a truly difficult choice of (1) stay imprisoned on your meds and continue to have people around you, providing you with ‘care’, or (2) find freedom from the drugs and face loneliness, marginalization, and isolation. It is truly courageous that you chose the latter, and I hope that the loneliness changes for you, which it sounds like it is.
I can completely relate to the experience of building a new life for myself, which it’s clear you are working hard to do. It is strange to think that I was basically reborn at age 27, learning how to feel feelings and sit with them, think thoughts and not run from them, interact with other human beings, sit with myself and be OK, find meaning and joy in things, and embrace being alive, all things that many people my age who were never disconnected from themselves by psychiatric drugs had figured out long ago. Speaking for myself, if I didn’t leave psychiatry behind, none of this would have been possible. When I was making the decision to come off of drugs, I had no idea what was in store for me— who I’d be, what my values were, where I’d go with my life— and I had to basically jump into the black abyss of the unknown. I’m glad I did it, but I must say that I had the support of my family and of people I found on my journey to sobriety right there with me. Had I not had that, I can’t say what would have happened. So, thank you for helping me expand my perspective.
I think your last comment about the double-edged sword of diagnosis is a very relevant one. All the profound issues with managed care aside, the fact that you recognize today that your suffering is something that words can do no justice to is tremendous— I feel the same way, myself. And this is what I believe lies at the root of all the trouble— this desperate need to have answers to who we are and to have explanations of why we do what we do. My ideal world is one in which we don’t feel the need to label, categorize, and define human experience at all; rather, we can just be with each other in an unmediated, mutual way, and be at peace with the indefinable essence of what it is to be alive.
I wish you the best of luck on your journey. I am so glad you’ve connected with the Mad in America community.
I love that idea – “Treatment resistant depression.” In what other profession can you completely fail to help, actually make things worse, and blame the condition you’re supposed to be helping for your failure? What a great deal! What would we say to the mechanic who charged us $500 for not fixing our fuel injection system, and when we asked why the car didn’t work any better, were told that we had “repair resistant fuel injectors?”
What a racket it is! Belinda, I am so sorry you didn’t have the support you needed to recover, and I admire you for the incredible strength and courage you have shown in getting away despite the lack of support. That they would BAN you from receiving any kind of support just because you didn’t do what they wanted is quite beyond the pale. I am so happy for you that you’ve found a different way forward. Remember that there are lots of us out here who believe in you and you can find us if you look. It’s so tough to get over childhood abuse – I work with abuse victims every day and I know from experience! But it can be done, and you sound like a very tough survivor and I am sure you will make it.
Thanks for sharing your story!
I’m so glad you’re still alive, Laura. Much Love.
(Oh, May 2010…I remember that month.)
My dear Faith,
I am so grateful to have met you through Mad in America, and to have seen you in Philly. Much love to you, too, and I will see you soon, I’m sure :).
I am reading this post and the comments with tears rolling down my face. I am, to put it bluntly, scared shitless. I don’t know what to do anymore. I want to be a good mother to my two beautiful children. I want to be a good wife to my sweet husband who I have put way too many times through the wringer. I was diagnosed with depression/ADHD/anxiety in twenties, and am taking Prozac, Wellbutrin, and Adderall, and Klonopin for sleep (could be worse, right??!). My son is almost 9, my daughter is 2, and I had a horrifying postpartum depression after having her that still seems to crop up way more than I care to admit. These drugs did help me then, that’s certain–but what is less clear is what is happening now, why my gut is in an uproar, why I feel so heavy? My psychiatrist is wonderful but sounds like Ben–he thinks I’ll go off the deep end without the medication. I have over the past 2 months cut my klonopin down from 1 mg to .5, and that has been harder than I can convey, but I just felt like it was making me worse. So where to go from here? How do you find support in this? I have to admit I want to be able to believe in the “expert” who knows what is best for me, outside of myself, because the idea that “they” don’t know is utterly terrifying. That leaves me then, doesn’t it? Not the person identified as “sick”, but me, whoever she is. And right now I don’t know who that is.
First off, I want to say that you are very, very far from being alone with the intense fear, confusion, and lack of self-identity that you’ve written about here. I say that before anything else because it was something vitally important for me to hear when I was in my own place of paralyzing fear— to know that there were others who’d been there, too, and who were no longer trapped in that darkness and confusion, and who no longer felt like they didn’t know who they were— because it helped me to keep moving forward, towards all the pain, confusion, and scariness of the unknown, and towards a sense of who I really was, beneath all the psychiatric drugs and the psychiatric labels.
In my opinion, you are the ONLY expert on yourself; it took me a really long time to realize that was true for me, and it didn’t help that doctor after doctor told me I couldn’t trust myself, my thoughts, my gut, or my emotions, because I was “mentally ill” and thus incapable of making the ‘normal’, responsible choices that ‘normally’, non-“mentally ill” people make in life. Eventually, I believed that to my very core, and saw psychiatry as my security blanket; to get from there to where I am today was definitely not an overnight process, either. Indeed, I didn’t just suddenly believe that they were all wrong and I was actually the best judge of what I needed; this has been a gradual process that has unfolded slowly over the last two years, and I still have plenty of growth left to do, which I’m actually now excited about. What I can say is that I no longer feel that instinctual urge to turn to psychiatry when I find myself with racing thoughts, intense emotions, or the urge to isolate. I know, instead, that my body, mind, and heart are trying to tell me something important, and that I need to take a break to reflect and sit with whatever it is I’m going through, and reach out for the proper support from friends, loved ones, and like-minded folks, some of whom blog here.
I say these things because it seems clear to me that your body, mind, and heart are trying to tell you something, and something very important. I believe to my very core that the intense emotional experiences you have been through in your life are nothing but human— indeed, it isn’t my opinion when I say that, today, there is no science in existence that proves a biomedical basis to emotional distress. That you turned to psychiatry in your twenties is nothing to regret; you did what we are taught to do in American society— turn to doctors to help us when we don’t feel ‘well’. That you now find yourself on two antidepressants, a stimulant, and a benzodiazepine is nothing to beat yourself up over, either— our society continues to perpetuate the myth that psychiatrists practice “sophisticated psychopharmacology” when they specially cater each drug regimen to each patient, and when those patients continue to get worse, they are considered “treatment resistant”, instead of the drugs being considered “people resistant”. That you have no idea who you are beyond being “sick” is very telling of the power of the biomedical model of psychiatry to gently ease us into the position of believing that our emotional discomfort is a sign that we are biomedically sick, and that this is a condition that we, on our own, don’t have the capacity to fix. But, more important that everything I just listed is the fact that you are in a place where you are questioning everything around you; a place of dis-ease, so to speak, with where you are in your life and with the “treatment” you are being given. Erin, this is all you need to make a start. It was where I started, that’s for sure.
I think it is beyond courageous that you posted this comment here, and I want you to know that you do not have to be alone for any step of your path from here forward, whatever path it is you decide to walk down. That you have already tapered from 1mg of klonopin to .5 is huge— I was on that drug for a long time, and coming off of it was, like you said, something harder than words can convey. The beauty is that you don’t need to convey it to me— or to anyone else who has been through the process of coming off psych drugs— because we’ve been there. That’s why communities like this one at Mad in America are so essential to people who are contemplating what it sounds like you’re contemplating— we don’t need to explain the pain because we’ve all had our share of it. And, at least speaking for myself, the pain that I do describe is something that stems from my humanness— not from any sort of underlying pathology or biomedical “symptom.” In my opinion, your pain— whether it be whatever you were going through in your twenties that first got you diagnosed, or the pain you’ve experienced since having your daughter— stems from the simple fact that you are a human being, and human beings experience intense emotions. I say this in no way to delegitimize what you are going through, and I think that is unfortunately the misconception I most often see people have when I say that. Your pain is real— very real— and that’s why it’s so profoundly dehumanizing to have it turned into a list of symptoms whose solution lies in a plastic bottle of pills.
I would be more than happy to talk to you off-site, whether on the phone or via private email. Additionally, a friend and I have started a Google group for people in the process of coming off of psychiatric drugs (or thinking about it). I would be more than happy to add you, or anyone else reading this, to that group if you want to email me. My address is [email protected].
Erin, the road towards the unknown— of who you are other than being “sick”, of what life might be like without psychiatric drugs, or during the process of coming off psychiatric drugs, of what it really means that there has never been anything biochemically wrong with your brain for all these years that doctors have told you otherwise— is not an easy one, nor should it be. The beautiful news is that you don’t have to do it alone, and although your journey will be unlike anyone else’s, as we are each unique humans with unique emotional experiences, it is one that you can make with others by your side. There are a lot of supports and resources out there to help you, and I am definitely one of them. Shoot me an email if you’d like to talk more.