My Place in the Crisis

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Editor’s Note: To ensure the security of her job, the author has opted to use only her first name.

My relationship with the mental health crisis laid out in Robert Whitakerā€™s book,Ā Anatomy of an Epidemic,Ā is deeply personal. Not only have I seen its effects on my clients, but I have experienced the effects myself.

There is no way to briefly summarize the enormousness of the epidemic. However, the story we have been told by psychiatrists and the pharmaceutical industry backing them is one, like many in our country, that has been deceitfully woven over time to profit business over well-being. The story that mental illness is aĀ chemical imbalanceĀ of the brain that requires a specific combination of medications to correct it, just like diabetes requires insulin ā€“ a story I actually taught for years as a volunteer for NAMI (National Alliance on Mental Illness) ā€“ is incomplete at best. I personally find it to be false.

As difficult as it is to admit, I feel I must share some of my mental illness history as a thread in the fabric of rampantly accumulating evidence that medications used to manage mental illness have gotten completely out of hand.

fabric threads

As a result of unresolved childhood trauma, I am aware of being diagnosed with at least nine psychological disorders over the past fifteen years: major depressive disorder, dysthymia (chronic depression), bipolar disorder ā€“ type I and II, post-traumatic stress disorder, obsessive-compulsive disorder, attention deficit disorder, generalized anxiety disorder, dissociative identity disorder, and borderline personality disorder. While I agree that I meet the criteria of most of these diagnoses as they are outlined in the DSM-IV-TR, I have come to realize that these labels are only shadows of my true identity.Ā However, the twentyĀ medications I have been prescribed (some multiple times) to control my mood have transformed me into less than a shadow of a person at times. Zoloft, Paxil, Wellbutrin, Lexapro, Prozac, Seroquel, Zyprexa, Depakote, Efffexor, Klonopin, Abilify, Geodon, Risperdal, Celexa, Lorazepam, Invega, Latuda, Lithium, Lamictal, and Ritalin are the ones I have records of being prescribed. I know first-hand the effects of short- and long-term use of psychotropic medications, and I consider myself one of the more fortunate ones. Due to my sensitivity to immediate side effects and my skepticism of medication in general, I have not stayed on many medications longer than a few months. Those I have stayed on for more than a year, however, are still battling their way out of me.

I am quite certain I am still experiencing long-term effects from taking Lorazepam, Lamictal, Risperdal, Lithium, and Ritalin. I do not have specific evidence of the direct effects of Lorazepam on my health, but I took it regularly for more than two years every night to help me sleep. Researchers have found that there is a great increase in depressive episodes and generalized anxiety disorder, as well as long-term cognitive impairment for those who have used Benzodiazepines regularly. Lamictal and Lithium markedly deepened my depression and perpetuated a numbing apathy I have not been able to overcome. Risperdal, which I was prescribed upon being hospitalized in 2009 to stabilize me for having a suicide plan, I actually took for only a few months. I stopped only because I had such painful tension in my neck that I could hardly move. I still have a facial tremor in my mouth from taking it.

Ritalin, which a seasoned psychiatrist offered me as a last desperate attempt to revive me out of deep depression in January 2010 – just after I was released from my psychiatric hospitalization – has had the most severe short-term and long-lasting effects on my being. I was technically a few pounds underweight to be taking the adult dose, but my doctor allowed me to take 60mg of Ritalin a day ā€“ the maximum adult dose. The morning I took my first dose of 10mg, I knew deep down it was too good to be true. I literally felt a switch go on in my brain that awakened me into a state of motivation and focus I did not even know existed. It was beautiful and frightening all at once. I felt I could accomplish anything. I had experienced mania andĀ hypomaniaĀ before, but I had felt really out-of-control and quite delusional during those episodes. This was different. About forty minutes after taking a dose, I felt completely in control . . . for less than two hours . . . and then the dose wore off andĀ I experienced great anxiety, followed then by an extreme let down leading to more fatigue and apathy than I had in the first place. I had to strategically time when I took the next dose, and the cycle began again.

To get through grad school while raising three children, I stayed on 60mg of Ritalin per day (eventually switching to an extended release caplet to ease the transitions between doses) for about eighteen months. It was enough time to trigger some intense mania, followed by several months of sheer anxiety, which had me in a constant state of panic. I also believe that my already sensitive skin and teeth further deteriorated from use of Ritalin, not to mention the experience of other physical side effects I will not describe here. There seems to be no end to the negative long-term effects from using this drug. I should not have been surprised, since it was similar to being on a daily dose ofĀ speedĀ orĀ meth.Ā But I was desperate, and I trusted my psychiatrist.

I knew I had to stop taking Ritalin by the middle of 2011. I also knew by then that drugs would not cure my anxiety, so I rarely used the Lorazepam I was prescribed, and heavily relied onĀ mindfulnessĀ to endure the extreme bouts of panic during the summer of 2011, often when I was alone late at night. There is no other way to describe the depth of my panic than sheer hell. I felt completely alone, as if there was not even the existence of any kind of higher power that could help me. In fact, I actually believed that I would eternally live in a state of pure terror; almost exactly asĀ outer darknessĀ is described in the religion of my upbringing. I came close to being hospitalized several times that summer, but somehow was able to avoid it. I think it was the miracle of mindfulness practice and a merciful God, whose presence I could not feel, but who must have cradled me through those dreadful episodes of panic.

Since going off of Ritalin about a year ago, the panic has settled back into generalized anxiety, but my depression has continued to deepen. My apathy is so debilitating that unless I am at work, or I have to do something for my three children (such as meals or getting them somewhere), I can be found in my bed. I am not always sleeping, but I can barely function if I do not have a specific plan or obligation. It is another kind of hell. Thoughts of suicide constantly invade me and I fight them with my best Dialectical Behavior Therapy (DBT) skills. Otherwise, I begin justifying why my death might actually be a good wake-up call to society. But the truth is, hundreds are taking their lives every day, and society is not waking up for the most part. Even recent tragic events in our country, such as mass shootings, seem to instill more fear and create moreĀ bi-polarĀ reactions from society than meaningful change.

While there are some valuable efforts being made in the mental health arena, there has not been a drastic decrease in the use of psychotropic medications to control moods. To me this is catastrophic. Not only do I feel the effects personally, I see the effects first-hand as a mental health counselor. I could tell you multiple stories of how medications have exacerbated mental illness symptoms in my clients and their family members. There are some stories I am not able to shake, but I will not be sharing them here, out of respect for the confidentiality of my clients. I hope, in time, that these individuals will be able to share their stories in the way that will best help those they have the ability to influence.

For now, let me be clear about this: most of the clients I have worked with who have taken more than one psychotropic medication at a time have felt that these drugs – meant to control their mood – end up taking control of them in some way. They have often expressed that they were not given enough information by their health-care providers, and have found that they have had to taper medication use to combat negative side effects. They have most often experienced confusion over clarity, and have attempted to put together a puzzle for which there is no complete picture available. In some cases, the result has been death – often after months or years of losing themselves slowly through the use of too much medication.

This is the truth. I have seen it over and over again as a volunteer for NAMI, and as a professional in the mental health field. While those taking one antidepressant, usually for mild to moderate anxiety or depression, seem to be the least affected, they are the exception and not the rule to “success” with use of medications used to manage moods. Even in those cases, the most common report I hear is that the medication “takes the edge off” so that the person can get through a difficult time. Stimulants,Ā Benzodiazepines,Ā and antipsychotic drugs seem to have the most negative effects on individuals with whom I have worked.

But don’t simply take my word for it.

Robert Whitakerā€™s book contains many individual accounts of people he met with, along with lengthy chapters containing hard evidence that these medications used to treat moods are literally creating mental illness instead of eradicating it. At best, they have only been proven to temporarily help people with symptoms of mental illness. For some, years go by before the negative effects truly set in, and for others the effects are immediate.

When I began reading Whitaker’s book, I decided to gather all of my remaining medications – some of which I have had for several years – and take them to the police station, where they have a place to dispose of them. It was an extremely freeing moment. I recognized that the only reason I had been hanging on to them was for a possible suicide attempt, and I knew that I could not leave that open as an option. Besides the fact that I could never leave my children, I could not let the pharmaceutical industry have yet another victory.

pill bottles

I have now been virtually free of these medications, with the exception of taking a smallĀ dose of Lorazepam occasionally (maybe twice a month) for sleep, for over a year. And still, I do not feel like myself. It is fair to say that before I ever took any medication, I did not feel like myself in many ways, due to issues from my childhood. However, the use of medication has only worsened my condition, and I do not yet feel like I have crossed a threshold in my journey where I have confidence in living a full life. Even as I write this, I am deeply aware of my limitations. It is still difficult to form sentences and connect thoughts, due to lingering cognitive impairment from psychiatric medications . . . and yet I must speak. Even if what comes out on the screen seems like a conflicted mess. Even if people I am trying to please or be strong for discover this post and wonder what in the world I am doing with this much baggage. I simply am not able to keep quiet.

So what now? A combination of reading Whitakerā€™s book, my own life experience, and witnessing the experiences of my clients and close friends has fueled in me a rage I hope I can channel into something that will help people instead of leading to my own death. I know that sounds dramatic, but I can hardly stand to sit in my office helping one person at a time, when there needs to be a massive revolution in the way mental illness is managed. The current trend appears to be a magnifying of the crisis through avoidance of the actual problem. I want to join the forces that are opening eyes to reality and actually helping work through what has become a mental health nightmare in this country and throughout the world.

Who is with me?

 

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussionā€”broadly speakingā€”of psychiatry and its treatments. The opinions expressed are the writers’ own.

20 COMMENTS

  1. Absolutely, count me in with you! I lost my beautiful 6’5″ son to this very tainted industry that you so passionately have described which has taken so many lives in its path and left thousands to a marginalized life of chronic mental illness with horrific, debilitating side effects from their meds.
    Thank you for the courage to speak out and may there be many, many more willing to have the guts to follow. I believe the grassroots movement is just beginning.

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  2. larmac – Thank you for the support. I am so sad to hear that you lost your son. Yes – far too many lives are lost and left marginalized. I simply could not stand back without sharing my story. People need to know what is happening.

    I wrote this version of my story back in December of 2012. I can now say that I am in a place of healing. Although I still have fears and days of depression, the fog of medication is now lifting.

    Thank you again, and peace to you.
    –Mary Anne

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  3. Whoa… too familiar. I read these stories and they are all so similar to what I experienced/continue to experience. I stopped meds almost 9 months ago and though I am certainly better, there are still many moments that I feel such apathy. I refrain from calling it depression because I don’t feel the overwhelming sadness or hopelessness. Apathy… disinterested, lack of drive and motivation are what seem to be a lingering effect of these meds. For years I was goal driven, determined to succeed in business, sports and life. Right now, I’m struggling to find my way again. Each month seems to bring a slight improvement…

    I too struggled with sleep… instead of the Xanax, which I was taking for almost 3 years, I started using Nyquil and ZZZquil… only as needed in extreme situations. Eventually, my normal sleep pattern returned. 3 years on meds, needing a pill to sleep… now it’s such a luxury to doze off so naturally. I corresponded with others that had similar side effects, they all said to be patient and you will recover.

    I believe we are all with you on the need for change… Whitaker’s book helped me as well, such simple logic… common sense. I hope we figure it out. If you ever need to talk to someone that is going thru a similar experience, look me up. It helps me to hear about survivors struggles and successes… I hope to help others along the way.

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    • Jeff –

      I’m glad you brought up the difference between overwhelming depression and the ‘coming-off-medication’ apathy/lack of motivation. I know exactly what you are talking about, and I think I’m finally coming out of that (for the most part). It sounds like we have had some similar experiences. I used to be extremely driven as well, and in a way I’m glad that it was not my path to continue that way . . . so I could become more real. I still have dreams and goals, they just feel deeper now – and with roots. Lots of tangled ones, but roots nonetheless.

      I really appreciate your comments and your support, and I’m glad you had the courage to stop taking your medication. I know how hard it is, and would love to hear how you did it. Since writing this post back in December, I have actually stopped taking Lorazepam altogether, even though I haven’t gotten rid of it (maybe a next step?). My sleep, however, has gotten worse, so maybe I’ll try some of your methods. There is plenty I can work on naturally as well, like going to bed at a decent hour!

      Thanks again.
      Peace,
      Mary Anne

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  4. I’m so glad you stayed alive! This is a beautiful post and I love the photography. I’m sorry to hear abour the loss of your son, larmac…and I agree that the movement (which began a long time ago) is approaching a pivotal point in growth and awareness.

    I keep waiting to wake up and have it be the day when some official somewhere makes some broad announcement of rampant corruption and abuses…and *tada* the medical model will be kerflooey! Of course, it won’t happen like that…but, it does seem as if just below the surface of public consciousness there is quite a bit moving in that direction.

    Thanks again for sharing your story and for posting awesome pictures!

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    • note re: “the movement (which began a long time ago)”

      …not that I know much of anything about the movement, other than it began long before I learned of it.

      In ways, the psychiatric human rights movement seems to me like an extension/branch of so many other movements toward liberation in the context of exploitative systemic oppression for the purposes of structuring power and profit to benefit a few at the expense of many.

      Hope you all have a great night!

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      • Yes! I hear you, Faith. In some ways, this whole medical model prison just feels like a nightmare from which it would be lovely to wake up one day and have it be over . . . and sigh relief. Of course, that is not how it works, and I agree with you that this “psychiatric human rights movement” is similar to some other human rights movements. The oppression has become so tangible to me over the past several years, and I am really grateful for spaces like this where it is productive to be angry . . . or sad . . . or honest when it is still quite uncomfortable and unproductive in other spaces. I see that changing, though, and it feels good to “hear” supportive voices on here.

        Take care,
        Mary Anne

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    • I’m glad you like the photography, BTW. I can’t take credit for the one of colorful threads, but the pill one is an actual photo of all the bottles I had saved up to the point where I took them to the police station. Of course, there were dozens more that did not get saved!

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  5. Thanks so much for this. I can identify with most of your story. I’m grateful that you can still be so brave and articulate. Take heart! My sense of spiritually has slowly reawakened. The disconnection with one’s inner knowing is the probably the worst crime of the drug paradigm.

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    • Madam Nomad – Thank you!

      I agree with you about the “disconnection with one’s inner knowing” being “probably the worst crime of the drug paradigm.” Healing is about connection for me, and my experience has been that the use of medication to manage mental distress most often disconnects us from authentic sources of healing, within ourselves and outside of ourselves.

      I am glad that you are in a place of spiritual awakening. Thanks for sharing some of your hope and encouragement.

      Take Care,
      Mary Anne

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  6. Thank you for sharing your story Mary Ann. I hope more and more people like you (people who work in the mental health arena who also have stories of survival)will speak up.

    I wish I could fast forward ten years, and be the same age šŸ˜‰ –I’d like to see real and drastic change within the mental healthcare system. I’d like to know that my son has a chance at better care than any of us have had for the past twenty years or so.

    I have a friend who took Ritalin to make it through college, and now sadly, she is so very disabled. She has MS, but she said the meds really did a number on her brain.

    I took the educational classes through NAMI. I learned so much! I was so proud of myself for going, and now, I feel so completely lied to, but then I know the folks teaching the classes were just like me. We believed what was written in the books and the ‘evidence based research’ that made up those classes.

    I look forward to reading more of your writing.

    Good luck to you, and many wishes of healing.

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    • Thank you for your thoughtful reply, Michelle. Comments like yours remind me why I spoke up in the first place, and I need that reminder sometimes!

      I have great hopes that your son will have better options in his future than we have now regarding our “mental health.” The seeds for those changes are being planted in many places (and hearts), and they will receive the light and water they need because they are good and true. If I don’t have this hope for the future, I have no reason to keep going myself.

      As far as NAMI is concerned, I am still trying to work through some past hurts (and yes, some lies) from being involved as a “consumer” (what a horrible label!). There was much that I gained from being involved with it intensely (for several years) – the opportunity to create and share art, and the feeling of being connected to others who were suffering as I was. I do not hate the organization, and I believe the efforts are largely authentic attempts to help ease suffering and erase stigma. I also believe there are many changes taking place in the organization that reflect a need for less focus on pathology, and more on connecting and healing. I actually have just recently contributed to one of those efforts on a national level, and it is promising (maybe I’ll write more on that later).

      Meanwhile, may the present time offer enough hope to you, your friends, and your family.

      –Mary Anne

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  7. I’ll also add my thanks for your sharing your story, Mary Anne. When I read “Anatomy…” I was pained by the thought (among others) of comments I’ve been making to my brother about how he needs to be on meds to “control” his brain chemistry following a nearly successful suicide attempt (after being off meds for 2 years). It’s so ingrained in society, though I agree that the grassroots movements are gaining momentum. I think MIA is a fantastic addition to that.

    As far as alternatives go, there’s a natural product getting out into the world by word of mouth now that’s been able to help over 90,000 people get off of their psych meds. It’s helped 85% of people who’ve used it. The idea is to give our bodies the nutrients it needs, in proper proportions, so it can heal itself. So many stories of changed lives. I’ve tried to get my brother to try it for years now, but he and his doctors have been afraid to leave the status quo.

    Bonnie Kaplan and Julia Rucklidge, who write the MIA column on Nutrition and Mental Health, have been major independent researchers on EMPowerplus Q96. It’s the most researched product of its kind, and we just want everyone to know about it and the hope and healing it offers. Though it doesn’t “cure”, the facts and stories are out there.

    I honestly hesitate to mention it here because I don’t want to be written off as self-serving, but there are so many hurting people we want to help, that are just searching for this product! If you have any ideas for how to get it to those in need in a big way, please let us know. Sample packs are available, and there’s info on qsciences.com.

    Thanks again for putting yourself out there. I look forward to hearing more from you!

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    • dlesli,

      Thank you for bringing up the importance of nutrition for mental health.

      These are some websites with good information on the subject:

      Autism Research Institute
      Feingold Association of the United States
      Food and Behaviour Research
      Food for the Brain Foundation ā€“ Brain Bio Centre
      International Schizophrenia Foundation
      Journal of Orthomolecular Medicine
      Linus Pauling Institute ā€“ Oregon State University
      Mindd Foundation
      Natural Health Research Institute
      NutraIngredients
      PubMed ā€“ Dietary Supplement Subset
      Truehope – EMPowerplus Studies
      Vitamin D Council
      Vitasearch
      Walsh Research Institute

      Be well,

      Duane Sherry, M.S.
      Retired Counselor
      http://discoverandrecover.wordpress.com/research-links

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  8. Thank you Mary Anne, for speaking out, especially enCourageing coming from a mental health professional challenged with mental health issues. Glad you’re still with us – you ARE still with us, aren’t you? We need to stick together – it’s hard enough to stay alive, alone – God knows it’s hard to stay alive.

    I am in process, due to increased generalized anxiety and OCD – worse than normal. I have BP2 and some OCD and ADD and ‘whatever’ … I am so sick of being in my head … but I keep trying, working hard with my bag of tools, to get better.

    Over the past 15 years, I have been, like so many of us, a pharmaceutical factory test dump and feel like the effects are manifesting in memory loss, increased anxiety, agitation, more fear of social interactions, mania, increasing OCD, cognitive problems, etc. The more I worry, the worse it gets.

    I do so many ‘right’ things … eat right (gluten free – no grains, light sugar), exercise daily, maintain weight (used to have major weight problem), drink lots of water, meditate daily, AA (9 years sober now), therapy (weekly), pray (constantly, even though I’m not religious), ACOA work as only the dying will work at it, get enough sleep, do service work … I mean, I’m a friggin saint and yet … I can so relate to you … My mind is on overtime, as if it is trying to destroy me – can’t find any calm. So…

    Here I am.

    I was googling this new substance Q96 that a friend had told me about, and your link showed up (not sure why, as there is no mention of it in your post, but what the heck), anyway, I am in the process of “perhaps” thinking about going back to a psych-med guy -AGAIN ‘ to reevaluate my meds to see if there something new to TRY? I’m on Lamictol and Toprol right now. Was on Lithium and Lamictol for quite a while – miss my Lithium (was on it for years, but kept having kidney problems – they had to take it away).

    OK, I’ve manicked long enough – not even sure why I wrote – guess I just needed to talk. Thanks for listening – like you had a choice šŸ™‚

    For the rest of the story (in the event you might like a glimpse) … http://louierochon.blogspot.com/

    Your new potential friend, in misery, and always hope-full recovery,

    Louie Rochon

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    • Thanks for your response, Louie. I am still here, but struggling as much as ever . . . off meds for over four years, doing a lot of those things you mentioned above (exercise, meditation, eating really well, and I also do yoga), and I still feel very imbalanced. I wish I had something really hopeful to share about my current direction. I am even considering going back on meds, even though they never worked before. It just gets really hopeless at times, always wanting to die and feeling a combination of PTSD/panic/mania frequently, with only limited help from mindfulness practice and all that I am trying to do — even helping others as a therapist. It is truly exhausting, and I wish I had more answers. I wish the best to you — the breaking apart place that the worlds seems to be in regarding these issues seems to be moving towards integration. There are just no short cuts in this process.

      Peace to you in your process,
      Mary Anne

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  9. Hi Mary Anne–So sorry to hear you’re still struggling so much. Have you looked into trying EMPowerplus Q96 (it’s mentioned a few times above) yet? You can get a week’s supply in a sample package, to see if it’s helpful. In 25 clinical studies (over 17 years), there’s no downside, and it’s produced positive results for 80% or more of the people who’ve tried it. I’d be willing to send you a sample pack at no cost if you would commit to trying it out and letting me know what effects you noticed. I truly want people to learn about this product and find the relief they need and deserve.

    There’s a great book called “A Promise of Hope” written by Autumn Stringam, the daughter of the desperate man–Tony Stephan–who came up with the product, in which she describes her journey. She and her brother were the first to take it, and they’ve both been doing amazingly well for the past 17+ years. If you choose to contact me, my website is DavidandDiane.myqsciences.com. I can email FAQs and PDFs or abstracts of the studies to you, and answer any questions you may have.

    All the best to you, Diane

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