Saturday, August 17, 2019

Comments by lemur

Showing 13 of 13 comments.

  • Bradford, the word “treatment” as used here refers to medical treatment–more specifically the protocol used for withdrawing from a drug.

    It appears that you’ve missed a crucial part of J Doe’s argument, which is that “treating” people (in the above sense of the word) who are physically dependent on benzos the same way you would “treat” someone who is undergoing a standard withdrawal protocol for an opiate addiction–by rapidly tapering or even cold-turkeying them off the drug, whether in a controlled detox facility or not–greatly endangers the lives of those who are taking benzos.

    This has nothing to do with “treatment” in the sense of societal attitudes or actions that are related to morality or judgment.

    Benzodiazepine withdrawal, because of the nature of how this class of drug acts in the body and brain, must be handled exceedingly slowly, over periods of months or years. It cannot be rushed; there is no shortcut.

    THIS is what is so crucial for everyone to understand. And it has nothing to do with semantics and everything to do with keeping people safe. If you haven’t already, please read Part I of the original article, and I am sure it will become clearer.

  • FG, thank you so much for your comment of November 24. I feel that your story goes to the heart of what JDoe’s articles are saying and demonstrates that the point here is not one of semantics. In a medical setting, where language and terminology determine treatment protocols, if the terminology is confusing, it is the patients who suffer. As your anecdote makes it clear, doctors also can be muddled when the terminology they are expected to follow is misleading.

    When it comes to benzos, eliminating the language of “addiction” (a word that is inextricably associated with behaviors) and focusing on the fact that the drugs THEMSELVES cause neuro-physiological effects and damage that can require years of suffering to begin to undo—that is the point, I believe, that needs to be hammered home and shared with medical providers and the public at large.

    My story is similar to yours, although I am still in the midst of what seems like an excruciatingly slow taper. In my case, I thought my prescribing doctor was one of the “good ones”—a smart, Harvard-trained psychopharmacologist who developed an outside interest in nonconventional practices such as meditation and energy healing. When he first prescribed me a “low dose” of a benzo for sleep, it was “as needed,” and while he told me that the drug had addictive potential, he said that that was only a risk if I took it 30 days in a row. I honestly felt that if I took the drug for 29 days and skipped a night or two, I would be OK.

    That was 25 years ago. Eventually, although I had no idea what was happening, interdose withdrawal caused me terrible back pain, and my doc gave me his blessing to split my dose and take the drug twice a day, every day, to relieve it. He assured me that any risk of addiction outweighed the benefits.

    When the light finally dawned (like for so many, after reading “Anatomy of an Epidemic”), I went back to my doc to ask for help tapering off. He was aware of the Ashton method, but was surprisingly discouraging about my prospects of succeeding with it. He told me about a patient of his—a high-profile successful guy who had everything going for him, he said—who had tried for a year to get off Klonopin and “couldn’t do it.” Stunned, I asked the doc if he had any resources to suggest. He told me to go to a meditation class. Not long after, this doctor had a medical event and opted not to return to his practice as planned, riding off into the sunset without so much as a goodbye.

    More recently, I looked at my records from years ago and discovered that this doctor had made a note, at the time that he prescribed a daily dose of Klonopin, that he had “discussed the risks” with me. I was floored. I had no recollection of any such conversation. A dear friend who had also been prescribed a benzo for sleep by this same doctor, for many years, agreed that she had never been told of its risks either. That friend is now fighting cancer and feels that she can’t take on the rigors of a withdrawal process, so she will likely be on the drug for the rest of her life.

    Sorry to write a book here. I just think that the more we share our stories—including stories of seemingly well-meaning doctors who may have been confused by language, but ultimately shirked the responsibility of offering true informed consent—the more we can begin to educate everyone who is affected by this insidious beast.

  • Oldhead, I think it’s important to take a look at the fact that, by sheer volume of words, someone claiming expert status has been drowning out the voices of survivors. When a commenter pays lip service to the letter of a written piece while continually overriding the spirit of it in the service of a different agenda, that is disingenuous at best. To my mind, that is not the function of a comments section, it is an exercise in subversion.

  • Richard said: “People can try all sorts of things, including distancing themselves from the addiction community and any concepts related to addiction, but this approach may isolate this part of the movement from important potential allies and end up keeping the numbers of activists rather small, thus making it even more difficult to change the publically accepted narrative about addiction and iatrogenic benzodiazepine dependence.”

    There are some 20,000 members of benzo buddies alone, and countless more iatrogenic benzo victims who don’t realize that they are yet—in part because most people who take drugs “as prescribed” are inclined to distance themselves from any notion that they are addicts. I don’t think “keeping the numbers of activists rather small” is the problem here.

    Richard said: “Don’t the “powers that be” want us all to be divided into separate groups unable to gather any unified strength of will and purpose(?) A situation where each group is declaring how they are different from the other, and desperately trying to avoid any of societally imposed stigma or commonly accepted prejudices associated with one identified group of people?”

    JDoe’s articles make it clear that the overriding impetus is not “avoiding stigma or prejudices” but avoiding misdiagnosis and mistreatment—as in medical “treatment”—that is harmful and even fatal. Those who look at this as a “cause” and not as an every day lived experience cannot truly understand what that means. And using the word “desperately” here in relation to JDoe’s carefully researched and well-argued points is offensive.

    For the sake of honoring JD’s efforts—which are already, by the way, being praised by iatrogenic benzo activists and passed along to doctors—let’s try to move this back from the realm of specious theory into the realm of practical reality. Who are the “powers that be”? Drug manufacturers, as we know, just want to sell drugs. As JD points out, if a drug gets a “bad rap,” big pharma will simply repackage and re-market, just as “mother’s little helper” became the anxiolytics with the deceptively “small doses.”

    Prescribing doctors, meanwhile, want to prescribe drugs to “fix” a perceived “problem” without complications (especially to themselves) and without the risk of being sued. When opiates garner more and more attention in the media for their addictive potential—that is, their potential for being abused by addicts—doctors concerned about litigation stop prescribing them and yank prescriptions from people who are already physically dependent on the drugs. Throwing patients into withdrawal is always horrible, and the only saving grace for those who are dependent on opiates is the fact that opiate withdrawal (to the best of my knowledge) is self-limiting—once it is over, in a few weeks, patients can emerge back at their starting point, provided there are no continuing issues with craving the drug.

    Let’s extend that same scenario to benzos. Let’s imagine that we all join hands and publicize all the ways that benzos harm people, emphasizing solidarity between those who take their drugs as prescribed and addicts who abuse benzos illicitly in combination with other drugs. What will be the response of prescribing doctors? Will it be, “Wow, I’d better start working on a slow and safe taper with *all* the people I’ve prescribed these drugs to”? (You know, that slow and safe taper they don’t even realize is necessary?) Or will it be “Uh oh, I’d better stop prescribing benzos altogether—they’re bad news like opiates”?



    Because let’s be clear—as much as we all want the same thing—for doctors to stop prescribing benzos for longer than the two to four week window—if doctors start yanking prescriptions from people who are physically dependent on them and need continuing prescriptions for a safe taper off of them, even MORE people will die. Even more people will find themselves in a protracted neurotoxicity that will rob them of years of their lives. When it comes to prescribed drugs that have the potential to be abused by addicts, it cannot be said often enough: benzos are a beast unlike any other—there is no shortcut to coming off of them.

    As I said before, PLEASE allow JDoe’s articles the light of day! The effort here is a very specific one—to educate everyone who needs to be on board to effect change, a very specific kind of change that will benefit *everyone* who is affected by these drugs. An enormous amount of thought and a great deal of lived suffering has gone into JDoe’s work, and a fruitful discussion was beginning to formulate here before it was co-opted, over and over again. If you have never experienced iatrogenic benzo damage, you have no idea what it takes to make an effort like this in spite of it. Please, please, let go of the talking stick for five seconds and allow others to have a voice here unimpeded.

  • The comparison in this much-discussed sentence is between “rape victims turned into the accused” and “iatrogenic benzo sufferers” being treated as if they deserve their suffering.

    In the previous sentence, I read “mistreat” as “mis-treat”–that is, to treat someone wrongly or inappropriately, as when iatrogenic benzo victims are first labeled as addicts and then subjected to a detox-type treatment protocol that is harmful on every level.

    Sometimes we bring subjective reactions to something that truly isn’t there.

  • Thank you, Spatler, and I agree that even the “appropriate” language leaves much to be desired. Ultimately it would be ideal to assign a separate term–e.g. damage, neurotoxicity–that completely takes things out of the realm of addiction and into the realm of physical illness and makes it crystal clear that the drugs themselves, and those who prescribe them long-term, are responsible.

  • JG–

    Your comments are absolutely spot-on, and your discussion about the need for some addicts or recovering addicts to draw everyone under the same umbrella is hugely important and serves to uncover the elephant in the room.

    The fact is that NOT making clear distinctions between iatrogenic benzo dependency and addiction behaviors harms and endangers everybody. Why? Because the excruciatingly slow withdrawal taper that benzos require–no shortcuts available–can only happen with a continuing prescription for the drug. Doctors who suspect addictive behaviors in a patient are not likely to keep writing scripts. Many people who have taken benzos ONLY as prescribed find themselves in this situation and are gravely harmed.

    Equating those of us in this population with addicts in ANY way does NOT help us. And it also does not help those who may BE addicts (most often abusing other drugs as well) but find themselves physically dependent on benzos. Because the fact is that those people will need prescriptions for a long-term taper too–and they can only benefit if we are allowed to advocate, clearly and separately, for appropriate treatment unique to prescribed benzos.

    In short: the best way to help in this situation is to allow those of us who are iatrogenically dependent on benzos to have our own voice without trying to co-opt it and shoehorn it into some other agenda.

    Please, those who want to impose some broader ideology around the issues JDoe describes–allow these articles to find their footing first. Allow those of us in the community JD represents to find support and solidarity and solace together as we try to bring these facts to the world. Unlike the problem of addiction, ours is an invisible crisis, and we have found no support anywhere except among ourselves. Let us find it here without diverting the discussion in a way that, I would argue, does not benefit anyone.

  • Spatler I agree with you completely that “taken as your doctor directed” benzos have caused a silent crisis that is so widespread yet so completely ignored or misbelieved by the medical community and by society as to be surreal. Recognition, validation, encouragement, and resources to help with the nightmarish process of withdrawal are so badly needed. And yes, benzos (and other psych meds) don’t discriminate–for many people, physical dependency on this class of drug, however it comes about, requires an exquisitely slow taper that lasts far, far longer than a six-week detox.

  • So well said, FG. I agree as well. As someone who is suffering a difficult and prolonged withdrawal from a “low dose” of benzos that were taken as prescribed by a doctor, I had to wince at this suggestion: “People often believe they are taking their alcohol or drugs recreationally as “prescribed” by the common or similar actions of their peers.” Seriously?

    Both Richard’s advocacy for addicts and JDoe’s advocacy for those of us who are not addicts can exist simultaneously and with mutual respect. There is no need to conflate the two, and doing so only re-entangles a situation that JDoe is trying very hard to remediate.

  • Hi Barry– Hats off to you for succeeding in withdrawing from high doses of benzos (and opiates) on your own. It sounds as though your life has significantly improved, albeit slowly, in the years since.

    One thing that continues to confuse me about the comments I’m reading, however, is that many people are not acknowledging (never mind honoring) the author’s main point: that using “addiction” language in relation to iatrogenic benzo dependency is harmful. Instead, they seem to ignore the point and perpetuate that very language by using it in their comments. As JD describes in such depth above, referring to iatrogenic benzo use / tolerance / dependency / withdrawal in “addiction” terms only serves to feed misperceptions and mistreatment–and those who have an iatrogenic physical dependency on these drugs continue to suffer the consequences.

  • Hi J–

    Congratulations on freeing yourself from psychiatric drugs, without any help from the psychiatric profession (a reality that is more common that not). You don’t say whether any of the drugs you were taking was a benzodiazepine.

    I can’t help but notice that you use “addiction language” to talk about your experience with psych meds and the process of getting off them. This is confusing to me, as the whole point of the article you are commenting on is that using words like “addiction” in relation to doctor-prescribed benzos is problematic and perpetuates harmful perceptions and practices. As JD makes clear, calling an iatrogenic dependency on benzos an “addiction” has the very real potential of leading not only to misjudgments (i.e., making assumptions that benzo dependency is in the same category as true addiction) and mistreatment (such as detox or too-rapid tapering) that can have dire and even fatal consequences.

    I salute you in being able to get off psych meds on your own. But for many people who have been made dependent on benzos and need to rely on continuing scripts in order to endure the long and painful process of withdrawing from the drugs, the stubborn misunderstanding of and outright dismissal by the medical community (and much of society) has made the syndrome of withdrawal and neurotoxicity far worse than it is already. Changing language is a step toward changing protocols and potentially toward changing minds. As JD’s article argues for in such depth, I’m hoping we can start using appropriate terminology here–especially those of us who have already been so harmed by these insidious drugs.

  • As someone who is in the process of a slow but often excruciating taper off clonazepam, and as someone who has a keen interest in language (that is, before my benzo brain had its way with my vocabulary), this thread has given me much to think about. I can see both sides, but ultimately feel that the language of benzo withdrawal and the iatrogenic illness it causes is a language that belongs to the sufferers.

    That’s not to say that I don’t see both sides. I fully understand what you mean, Melissa, when you say:
    “I want to create an opening of discussion for those who see dependency as only addiction. Cultural blame was my shame and my intention is to unravel it slowly. That’s the purpose of the book.”

    But in a world where psych drug withdrawal is virtually invisible to all but those who endure it, where the prescribing doctors are in some kind of surreal denial, and the general public (hell, probably most of our friends and family) keep a judgmental or embarrassed distance, I don’t think we’re quite there yet. I don’t think those who will read Melissa’s story–those who don’t have a similar story or a political stake in it–will read the word “addicted” and quickly make the leap to: “oh, she’s not ADDICTED addicted–I get it.” No matter how many times you might explain the why’s and how’s of how you got there.

    The reason I don’t think this will happen is because if I wasn’t in the middle of this hellish experience myself, I wouldn’t make that leap either. I would suspect that there was “something else” going on.

    There’s also the unfortunate fact that the words “addict” and “addicted” have a dual connotation–not just the pejorative one that conjures up images of wasted recreational drug users on street corners, but also the trivializing one that has folded into everyday usage: “I’m addicted to chocolate”; “I’m addicted to Dancing with the Stars.”

    Melissa, I have to say that your posts have been a kind of lifeline to me. Your metaphor about “gaba grandmas” made me weep (when I couldn’t cry), and has been one of the most profound images I’ve managed to hold onto as I try to make sense of what is happening to my brain and body. You have the power to make vividly real what is almost impossible to describe (and I thank you for taking notes during that whole dark time!).

    I think if I were writing a book about my experiences with benzo withdrawal, on this very verge of cultural awareness, I might choose to use the terminology favored by the drug makers and the doctors: “physically dependent / physical dependence.” And then I would pair that terminology with the kind of brutal descriptions you present here, to make it inescapably clear that THAT’s what this seemingly benign language means. I wouldn’t give readers the opportunity to pass judgment, I’d want every single one of them to imagine that it could be them on the other side of the looking glass.

    And having said all that, I think that an introduction or preface might be a place that allows a discussion of just how loaded this language is, how much it obscures understanding, and how much it all has to change. I feel we’re on the cusp, and that as more and more of us tell our stories, that change has got to happen.

    In any case, thank you, Melissa, for the opportunity to weigh in on your book in progress. I look forward to more glimpses of what is to come.