Finding the Meaning in Suffering: My Experience with Coming off Psychiatric Drugs (in a Nutshell)

Originally published at Mad in America, April 2013

For the last month or so, Mad in America has been hard at work building a directory of “mental health” providers across North America (and eventually, we hope, the world) who will work with people wanting to come off psychotropic drugs.  So far, we’ve connected with traditional doctors, osteopaths, naturopaths, psychologists, social workers, counselors, and alternative/holistic practitioners and healers who do this work in varying ways — some have prescribing capacities and some don’t; some do the actual tapering, while others provide psychotherapy; some offer nutritional or supplemental support; others, Reiki and acupuncture.

I’ve been honored to have been tasked with the responsibility of building this directory, and I have to say, it’s been inspiring to talk to people all over the country who do this work, and who “get it”.  Closer to the launch date, which we anticipate will be in the next few weeks, I’ll write up more about this project, and thank those who’ve played such a significant part in making it happen.  In the meantime, I’ve been itching to write a bit about my own “coming off” journey.  While it’s on my mind every day, I’ve been thinking more about it recently, given my work on the directory and the recent release of Daniel Mackler’s new film, “Coming off Psych Drugs: A Meeting of the Minds”.  I woke up this morning and my fingers were itching.  I knew it was time to write.

In September 2010, I came off the last of my “med regimen”— lithium, Lamictal, Abilify, Effexor, Ativan, and a PRN of Seroquel— and I said goodbye to a life of orange pill bottles and phone calls to CVS pharmacy, of dosage increases and new scripts to be filled, of the floral pill bag that shook like a maraca, and of the complete and total dependency on inanimate chemical capsules to define what I felt, how I thought, and who I was.  After over ten years on psychotropic drugs, it had been an agonizing five months of tapering— I realize today that my psychopharmacologist likely had no idea what he was doing— and I would continue on for the next year and a half in the midst of daily physical, emotional, mental, and spiritual pain [for more on this, see my Madness Radio interview].  In the midst of this suffering, however, I was able to put my head on the pillow at night knowing that these pills were out of me.  Gone, never to enter my bloodstream again.  A decade of daily psychotropic drugs had circulated through my veins, seeping into my organs, my brain, my hair, my skin, my nails.  A decade of daily psychotropic drugs had successfully disconnected me from a sense of self, physical health, emotional balance, and social connectedness.  A decade of daily psychotropic drugs had nearly succeeded in killing the last scraps of my human spirit, and me, along with it.

On that brisk fall day over two and a half years ago, against the wishes of my “treaters”, and in the midst of hell on earth, I reclaimed myself.  My Self.  By no means has a second of it been easy, but it’s certainly been the best decision I’ve ever made in my life.

As time’s gone on, particularly in the second and third years of my post-psychiatry life, I have slowly but surely healed from the trauma of my psychiatric “treatment”.  It’s been a long road, fraught with physical pain, unparalleled emotional upheaval, gut-wrenching anxiety, and paralyzing fear.  In the midst of my worst moments— whether it was the hours upon hours spent lying frozen in fetal position on the sofa, staring blankly at the wall, disconnected from the world; or wondering if I’d ever be able to hold down a job, a relationship, or even the daily task of showering and changing out of sweats; or looking at healthy people functioning in the world around me and feeling baffled by how the hell they could possibly be doing it; or wanting to rip my skin off from the debilitating anxiety, and shut my head down to silence the endless chatter; or crying when I didn’t want to cry, and laughing when I didn’t want to laugh; or feeling like the only alien on planet Earth— I clung on to the one and only reason why I’d started my journey off of psychiatric drugs in the first place, my life preserver, keeping me afloat: I was determined to find myself, the Self I’d lost as a fourteen-year old to a “Bipolar” label, and a life sentence of polypharmacy.  This spark of fire, however small it might have been in the beginning, outweighed all the pain, and allowed me to keep trudging forward.  I was absolutely, 100% determined to find myself, no matter what the cost.

As a person who’s found liberation from psychiatry, I have learned that the least fruitful path to follow— for me, at least— is one of self-victimization.  I served a long sentence that began early in my life and came with the shackles of numerous psychiatric labels and at least nineteen psychotropic drugs.  I could say that I had my life taken away from me by Psychiatry, but I simply don’t believe that anymore, for only in finding peace with that chapter of my life’s story, and acceptance of all the suffering, the isolation, the hopelessness, the desperation, the self-sabotage, the self-destruction and the nine years of daily thoughts of suicide, can I say that I’m truly free.   I decided about a year into my post-psychiatry life that continuing to think of myself as a victim would mean keeping myself dependent on Psychiatry, locking myself up behind its bars as an emotional slave.  I turned my deep-seated resentment and rage at Psychiatry into passionate and productively channeled anger, and suddenly, I took off, shooting forward into a new life that continues to unfold in truly amazing ways now that I’m no longer held back by those toxic emotions, and, of course, the toxic psychotropic drugs.

As I’ve written before, and however backwards it might sound, today, I am grateful to those doctors, even to the first psychiatrist who threw me on Depakote and Prozac as a young teenager.  I’m grateful to the locked wards and the internalized oppression and the security-blanket dependency on my “meds” and their numbing and disconnecting effects, because all of it has allowed me to become who I am today: a thirty-year old woman with a life ahead of her, who feels the full spectrum of human feelings and an authentic sense of self and purpose.  Had I never foundAnatomy of an Epidemic, had I never felt that tiny spark of fire in my belly that told me to take my life back and stand up against my seven-person “treatment team” when they disagreed with my desire to come off psych drugs, and had I never been determined with every ounce of my being to move through all the pain that came along with it, not only would I not have this exciting life ahead of me, but I wouldn’t be alive at all.  I know this to be true.

I do not pretend to have expertise on the topic of coming off psychiatric drugs.  Nor do I believe there is one right way to successfully do it.  What I lay claim to is my own experience, my own lessons learned from constructive choices and destructive ones, and from the intuition I’ve only recently begun to tap into since healing from the trauma of “treatment”.  What never ceases to amaze me is how vast the experiences are when it comes to coming off psych drugs— I’ve heard stories about successful cold turkey withdrawal with no symptoms, and ones about unsuccessful slow tapers.  I’ve heard stories of those who’ve successfully come off in months, and others who did it in years.  I’ve heard of people who found tremendous benefit from supplements, and others who never took a single dose of one and succeeded anyways.  I know some people who’ve thrived from strict nutritional protocols, and others who couldn’t care less about cutting out certain foods.  Exercise, no exercise.  Yoga, no yoga.  Meditation, no meditation.  I know people who were on psych drugs for many, many years, and have successfully come off, and others who went on for a year or less, and struggle tremendously with the withdrawal.  There is simply no one way to come off psychiatric drugs, and no one withdrawal trajectory.

While I certainly agree that the thousands of anecdotal stories out there suggest that a person’s odds of success are increased greatly by slowly tapering off, that doesn’t mean it’s the only way.  It wasn’t, for me.  I came off of five psychotropic drugs in five months; many would say that this is much too fast of a taper, or even not a taper at all.  A wise woman, active in the Psychiatric Survivor movement, once shared with me that tapering off psych drugs very quickly, or stopping them cold turkey, is like Russian roulette— you just don’t know what’s next in the chamber.  Maybe I would have experienced withdrawal for a shorter amount of time, or with lesser intensity, had my doctor brought me off in a year instead of five months.  Maybe had I been ten years older, I would have struggled more.  All I can say is that my journey went the way it did, and here I am today.  I know what’s worked for me, but what’s worked for me might not work for someone else.  No one told me to do all these things; I simply tested it all out, often times accidentally, and bumbled around until I found my path.  I established my own threshold for pain; what I can bear, someone else can’t, and vice versa.  I’ve heard many say that when it comes to the world of self-help, it’s important to “take what you want, and leave the rest.”  That’s been a helpful motto for me to live by, especially as it relates to the topic of coming off psych drugs.

There are many of us out there who work incredibly hard to support people who are coming off of psychotropic drugs.  Among us are psychiatric survivors, medical doctors, psychologists, social workers, counselors, holistic/alternative practitioners, and family members.  You can find us in coffee shops, online forums, facilities, clinics, private offices, via Skype, on the phone, or holding banners at protests and yelling in the megaphone.  Each of us brings a particular nugget of wisdom, inherently subjective, and not for everyone.  There are books, articles, forums, chat rooms, websites, and presentations devoted to the topic of psychiatric drugs and how to come off of them.  Each is simply one way to do it.

When I began the process of tapering off of psychotropic drugs, I had none of these resources.  Sure, I had that huge “treatment team” who met about me on a regular basis and worked hard to ensure I relied on them to “manage” my life, but other than one social worker, a wonderful man whom I’ll never forget and always be grateful to, I felt zero emotional support from the “mental health” system as I came off.  In fact, from looking at my medical records at that time, it appears that my psychotherapist didn’t even realize that my psychopharmacologist was managing my taper, because she reported that I was “non-compliant” and came off my “meds” against medical advice.  But I digress…  My psychopharmacologist had agreed to bring me off four of the five psychiatric drugs (not Lamictal, which he claimed had been proven effective for “Borderline personality disorder” and thus I needed to stay on it), and this was only because the “team” had decided I’d been “misdiagnosed” Bipolar and really, was just an alcoholic and a Borderline!  How interesting!  I met with that doctor once a month as he decreased the four drugs, and I came off the fifth on my own, without having read a single paragraph on how to taper off.  Never once did I connect with a provider about the pain I was going through; I used my psychopharmacologist to taper me off, and nothing more.  This was my experience: not right, not wrong, just mine.  There are certainly providers out there— many of whom will be in our directory— who practice in entirely different, humanistic ways, and who are true supports for people coming off.  I just simply never crossed paths with one during my time in the “mental health” system.

The bulk of my support came from family, and from the sober community I was very active in at the time.  Having a space in which I could express my pain every day, and listen to others do the same, even if their pain wasn’t necessarily connected to psychiatric drug withdrawal, was incredibly beneficial to me, and I believe I wouldn’t have made it through without that support.  In part, I bumbled through the first six months or so believing that the excruciating pain I felt was “early sobriety” from alcohol; I had no idea until many months in that it was less my body healing from alcohol and more my body’s desperate attempt to heal itself from all those years of damaging psychotropic drugs.  At the end of the day, though, that community worked for me because while the drug was different, the emotional pain was the same.  I was also lucky enough to be living with extended family, to have no job (other than being a professional patient, a career I became quite good at!), and to not have the worries of rent, children, or paying the bills.  In short, I was incredibly lucky, and incredibly privileged, to be so taken care of.  I look back on this today and feel gratitude from the bottom of my heart.

While I was able to withdraw in large part because of the reasons mentioned above— unconditional love, a de-stressed environment, and a space of mutual support, among many things— in truth, my success was not because of how quickly or slowly I tapered, the order in which I came off the drugs, my nutrition (or lack thereof), my exercise (or lack thereof), my sleep (or lack thereof), or the people from whom I sought support.  There was something much deeper I had to search for first, something I couldn’t find in an office or on the internet or in a textbook or in a church basement or in the words or wisdom of another person.  For me, what helped me successfully come off of over a decade of polypharmacy was the Why.  Why do I want to come off psychiatric drugs?  What did it mean to me?  What was it that I was searching for?  After I connected to this deep sense of meaning in the “coming off” process, those factors mentioned above— in other words, the How of the withdrawal—carried me through, and brought me slowly back to health.  Discovering why I wanted to come off psych drugs was like putting the key in my ignition and turning it on; the method and the means by which I did it the steering wheel, accelerator, and brake.  Had I not found that key, the process would have been mindless and empty, only about tapering, measuring, calculating, adjusting, so on and so forth.  Likely, I wouldn’t have been able to continue, had that been the case.  When I really connected to the Why of it, I could face the suffering that followed.  As I say often to others, in my experience of coming off psychotropic drugs, the only way out was through.

While I’m really just scratching the surface here with all I could say about my experience of coming off psychiatric drugs, I’ll leave you with what I believe, in my experience, are the key components to a successful withdrawal.  You can take what you want, and leave the rest:

  1. While it’s important to be well-informed about psychiatric drug withdrawal, too much knowledge— and too much fear— can create a self-fulfilling prophecy.  I bumbled through my withdrawal with little to no knowledge of what was ahead, and I actually believe that this helped me tremendously.  I didn’t obsessively read up on withdrawal and fill myself with fear about all the horrible things that could happen to me, and thus, I didn’t set myself up for defeat.  I think there’s a fine balance here between knowing too little, and too much, and it’s a line that each person has to decide for him/herself.
  2. There are no universal experts on psychiatric drug withdrawal, because each person’s journey is so different.  While it can be really informative and helpful to learn from others who’ve been through this process before you, and there are people out there doing very good and determined work to bring people off psych drugs, you are the only expert on yourself and your experience of the world.
  3. The mind plays tricks on you.  On a regular basis, my mind wanted me to give up, to wave the white flag of surrender.  In those moments, I reconnected myself to my sense of purpose— to that determination to find out who I was off of psych drugs— and I did my best to coexist with my thoughts, anxiety, and fear without letting them take me over.  It was in times like these that I did my best to reach out to a friend or family member for support.
  4. Take the time to understand how your body is impacted by nutrition.  I was never a believer in the power of nutrition, and this has been a profoundly beneficial discovery for me.  Cutting gluten out of my diet, however hard it initially was, has done wonders for my mind and body; cutting out processed sugars and processed foods in general, except for the occasional splurge of course, has proven just as helpful.
  5. Remove whatever stressors you have control over, to create as de-stressed an environment as possible.  For me, this meant staying free from “illicit” drugs and alcohol, from unhealthy or traumatizing relationships, and from responsibilities that I wasn’t required to take on.  My body was (and often times still is) incredibly sensitive to the environment I’m in, and thus, managing whatever I did have control over was important for me.
  6. Listen to your body, however hard that may be.   Psych drugs disconnected me from my body and desensitized me in so many ways, so this was certainly a difficult process for me.  I know today that my body is always communicating with me, if I just take the time to feel what it’s saying.
  7. Surround yourself with unconditional support, whether that means family, friends, providers, healers, or some other type of supportive community.  I’ve learned that no matter how isolating or painful the journey may be, you never have to be alone.
  8. When you’re losing hope in yourself, and feeling yourself sinking in the quicksand of withdrawal, place your faith for the time being in those who’ve walked the path before you.  There were so many times when I wondered if I could keep going, when any faith left in myself was so pushed down that I could no longer feel it.  On those days, I thought about others who’d walked the same path before me, feeling the same pain and the same fear, and who were no longer mired in the suffering anymore.  Faith in them was my way of having faith in myself.
  9. More than anything, connect to the meaning behind why you are coming off psychiatric drugs.  This is the seed from which everything grew for me— both the thorns and the blossoming buds.

 

I could keep going, and going, and going.  For your sake, I’ll stop here, and leave you with a quote from Viktor Frankl’s Man’s Search for Meaning, a book that was instrumental to me as I came off of psychotropic drugs.  It sums up everything I’ve said here, in one beautiful sentence.

Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.

Indeed, we’re all in this together, and in the midst of the often tremendous suffering lies freedom.