In Case You Missed This

Ally Nugent
By
-
69
226

On November 12th, 2015, the third anniversary of the day that I abruptly stopped taking benzodiazepines, my dear friend, J. Doe, published a two-part article here on Mad in America examining the language that is commonly used to describe benzodiazepine (benzo) iatrogenesis. Iatrogenesis occurs when the activity of medical professionals, or their promotion of products or services as beneficial to health, injures the patient.  J. Doe wrote these articles one paragraph at a time, over a period of nine months, in a condition that can only be described as a living nightmare.  While bed bound and steeped in disassociation and cognitive dysfunction–wrestling chronic fatigue and barbaric nerve pain J. Doe wrote.  They painstakingly researched, structured, and combed through their work in a state that allows most little more than the energy to sleep.

It was passion.

Not only did they complete their work, but these pieces are easily the best writing available unpacking the problems with bad language in the benzo community and beyond.  For years, J. Doe would cringe at the casualness with which addiction-based language was used in the community.  And though a vocal minority felt the same, the problem persisted presumably because “old timers” (people who have been in the benzo community for many years) were accustomed to addiction-based language, while “newbie” sufferers (those new to the community) were simultaneously being indoctrinated to use the same pervasive vocabulary.

My friend wondered if anyone had truly considered the price we were paying for addiction-based language.  After all, the inappropriate use of this language when J. Doe first discovered and attempted to research a solution to their own tolerance and toxicity to benzos is what led them to cold-turkey in a detox facility resulting in years of debilitating suffering.  After four years in hell, J. Doe mustered the will to speak to this problem.

This two-part article, point for point, displays the inaccuracies of using addiction-based language to describe benzo-dependent sufferers’ experiences while examining the dangerous narrative that regrettably follows.  The author reminds us that click-bait language that lumps physically dependent people in with addiction and addiction protocol is not only inaccurate, but it’s also wildly dangerous.

These articles are long.  Even longer for those of us who struggle to read at all.  Hell, they had to be long– people don’t stop using crutch language easily and for nothing.  J. Doe wanted to pay the subject the respect that it requires.  When the articles appeared in November, many read them, but that didn’t feel like enough to me.  I wanted a summary of these articles captured in a Youtube video so that those in the thick of benzo neurotoxicity could tune into these ideas in a way that might be more easily digestible.  I hoped more benzo sufferers would begin to question how they describe (and allow others to describe) an illness that remains decades behind in understanding and recognition.  I also wanted to draw attention to the content again in hopes that more medical professionals would read and understand the crucial distinctions in language surrounding this problem.

This video is simple, but the information in it is paramount.  We have to stop using addiction language to explain physiological dependency.  Please watch the video or read J. Doe’s articles to find out why.  Thank you to my dear friend.  You are selfless to the point of absurdity.  I’m honored to know you and work with you on projects like this. Thank you for your contribution.

J. Doe’s articles:

YouTube Video: The Consequences of Using Addiction Language to Describe Dependence

Editor’s Note: The pseudonym “J. Doe” and the pronouns (they/them) will be used to describe an anonymous author discussed in this piece.

***

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.

Previous article“Too Many PA Foster Children are on Psychiatric Meds”
Next articleLatest Antidepressant a Case Study in Institutional Corruption
Ally Nugent
Ally Nugent
Injured by Psychiatry: Ally Nugent is an activist and a psychiatric survivor.  She writes and speaks about benzodiazepine iatrogenesis, as well as psychiatric survivor intersectionality.  She also operates a Facebook page for "Injured by Psychiatry Awareness Month" where sufferers are encouraged to speak out about their injuries collectively in a profile picture campaign each October.  She draws from her own experience suffering from benzodiazepine neurotoxicity as well as the lessons of those with seasoned insight in this area.  She is currently working on a memoir about her experience being an iatrogenic shut-in.

69 COMMENTS

  1. There’s been endless debate about this on BenzoBuddies–again: YES, LANGUAGE MATTERS. Language creates culture. The culture needs to be changed to prevent more harm being piled on those *already* harmed.

    Thanks, Ally, for all you are doing to expose this crime that is wreaking havoc with way too many to be at all acceptable.

    • Thank you for this comment. I will go blue in the face before I ever fully express enough how crucial it is the dependent sufferers’ struggle is seen singularly so that our distinct deprivation is finally met.

      I’m so glad that this dialogue continues, and people are starting to change they way they talk about this.

  2. Great summary. Thank you so much for making it! I’ve been hoping to see more follow-up here to J Doe’s article.

    I also appreciate your description of J Doe’s struggle to write it. I am just over two years post-Klonopin and still struggling to write *anything* most of the time, so I am in awe of J Doe’s work and your own.

    • Thank you! This means a lot to both of us. It’s usually a one paragraph at a time operation. It may take 3-6 months to do a Youtube I really want to do. I worry often about the direction of this illness. I’d like to see major change–unfortunately this language problem seems to be undercutting our desperate attempts for recognition and safe care.

  3. To write so comprehensively from such a state is an impressive feat of strength, and we definitely need this kind of reporting…
    I think current addiction protocols hurt lots of groups of people. Instead of rushing to distance benzo sufferers from “addicts,” is it not better to look at how more humanistic approaches could help people suffering from all kinds of dependencies and addictions?

    • Instead of rushing to distance benzo sufferers from “addicts,” is it not better to look at how more humanistic approaches could help people suffering from all kinds of dependencies and addictions?

      This would seem to be a no-brainer, but it became a highly divisive issue the last time this discussion took place.

      I think if people put their egos and emotions aside they will recognize that the core issue is the fact that we are all up against a system which encourages addiction, dependency and scapegoating as a way of diverting our attention from the real problem, which is itself.

      • I think the point here is in terms of *treatment*–addicts are sent to detox (the time frame is short) where those who want to discontinue benzodiazepines should be using a long, slow taper that should ideally take months or even years. That approach is not something available to us unless we do it on our own, and most don’t even know that that’s what is needed! We are trying to change the terminology to help prevent the damages that occur from tapering too quickly, or from cold turkey discontinuation.

        Who knew? Who knows? No one there to help guide us except for Heather Ashton and a few online support groups who often promulgate nonsense.

        It really has nothing to do with the ‘shame’ of addiction; I empathize, truly, but it is not the issue for those of us who took a medication as directed and ended up in hell when we tried to quit–there is no help out there! What Ally and J. Doe have done is trying to change that!

        (You ‘guys’ have my support, admiration and gratitude.)

        • I was going to respond in detail, but I think you nailed it.

          I’m struggling with these comments. I see that the heart of them is good, but they don’t address any of the ideas that were put forth in the articles or video. That would go on to address these concerns in great detail.

          I hope that anyone in the community that was interested in understanding why language is so important would read or watch the work, and then ask questions about specific arguments that were made.

        • It really has nothing to do with the ‘shame’ of addiction

          I think that was the concern, that this new terminology was being developed specifically to distance benzo dependent people from those “other” people.

          I am, though, forced to ask, what about those who got hooked on opiates by their doctors? Isn’t that also iatrogenic?

          • Oldhead; you don’t seem to ‘get’ it. It’s about getting the correct treatment and support, and nothing at all to do with ‘distancing’ ourselves from ‘those people’…benzos are not opiates. Opiates are a breeze to get clean from compared to the damage the brain must repair due to the downregulating of gaba receptors as a result of our ‘treatment’.

            Our brains have been altered; not in the same way that opiates alter brains, or the same way that SSRIs alter brains, but in a very specific way that leaves us bereft of calming gaba and an excess of excitatory glutamate. We are in a constant state of flight or fight without the ability to calm the f*** down. We are actually brain damaged! This conversation is not *about* opiates! It’s about benzos!

            Did you watch the video?

            Right now my cognitive impairment is keeping me from explaining myself very well–But you don’t seem to be listening to what we are saying…which is typical and is just a glaring example of another thing that makes this experience a nightmare.

            It’s hell on earth; the CIA couldn’t invent a better way to torture people.

            Consider yourself blessed by your ignorance.

          • OK I think I’m out of this discussion. This is what happened last time.

            I have no trouble “getting” any of this. I simply tried to articulate a concern that empathetic people might well have about language and how it is being proposed that it be used in this circumstance.

            I was in fact confirming that I appreciated human being’s assurance that the main concern was treatment protocol, and not politically distancing benzo dependent people from those addicted to opiates. And I think my question about iatrogenesis is still appropriate, and unanswered.

            So much for trying to be diplomatic.

          • I am, though, forced to ask, what about those who got hooked on opiates by their doctors? Isn’t that also iatrogenic?

            Yes, of course it is. Your answer is contained in your question, oldhead. But this is specifically about benzos.

          • Uprising — It seems however that a clear distinction is being drawn here between “iatrogenic dependence,” which seems to be reserved for those with benzo problems, and “addiction,” which is applied to those who are hooked on opiates. All I’m asking is why those who have been introduced to opiates by their doctors are not also qualified for the label “iatrogenic dependence”? It’s a semantic question which has nothing to do with treatment per se.

          • iatrogenic – induced inadvertently by a physician or surgeon or by medical treatment or diagnostic procedures
            http://www.merriam-webster.com/dictionary/iatrogenic

            So yes, those who have been made dependent on opiates by their doctors have an iatrogenic condition by definition. The distinction that is being drawn here, however, is between addiction and iatrogenic *benzo* dependence. This distinction has everything to do with treatment for people with iatrogenic *benzo* dependence.

      • Having had problems with substance abuse in the past, I am as sensitive as anyone to moralizing about addiction. I don’t see that happening here. I have experienced both addiction and iatrogenic dependence, and they are not the same. The point is not to “distance” one from the other in moral terms, but rather to emphasize the fact that when people with iatrogenic dependencies are treated by the medical establishment as if they are substance abusers, their overall conditions are often made much much worse.

        From the video:

        In the case of benzodiazepine dependence, mistreatment – treating it the way one would treat an addiction – can result in potentially fatal seizures, psychosis, or suicide, as well as years of infirmity due to protracted withdrawal syndromes. The stakes of using the appropriate terminology in this case couldn’t be higher: in medicine, diagnosis terminology defines protocol and treatment and therefore ultimately determines the outcome for the patient.

        Let’s keep it real: People with addictions get treated like dog shit by the medical community and by the broader society, and there is no excuse for it. I agree with lily.c that everyone would be better off with more humanistic approaches, and I also agree with oldhead that the system encourages addiction, dependency, and scapegoating. But this particular conversation is not about addiction. This is a call for the medical community to recognize iatrogenic dependence for what it is, and to apply a distinction that already exists in the medical community, so that people with iatrogenic dependencies do not suffer additional harm from to said medical community.

          • I accept your “sorry”, “lily c.”, so please accept my complete forgiveness! I don’t see your comment as “derailing”, at all.
            My benzo story is very personal, but benzos are only a small part of it. Personally, I wasn’t too impressed with the video, but then, I’m a very critical, and detail-oriented person, who’s very good at English. What I see in the video, is trying to change a reality – to change people’s minds – simply by changing words.
            To me, that seems like trying to make bullets safer, by requiring them to be painted orange. Yes, the language needs to change, and that means “new words”. But I don’t think that changing words will have as much impact or effect as changing “hearts & Minds”, and that takes education, and education is more than simply learning new words. Recently, I got “fired” by my Doctor, (M.D.), because I wouldn’t sign the “drug contract” he handed to me! And, I didn’t want to play another round of “pharmaceutical roulette”. The Doc. couldn’t – or wouldn’t – explain *WHY* the drug contract was drawn up in the first place, or why I had to sign it. It was all about the Hospital covering it’s butt legally. It had NOTHING to do with MY healthcare. And, when I challenged the Doc. to show me anything in *MY* medical chart, that would support *his* position, he had NOTHING. So, when I called him out, and said “Doc, check your privilege”, he freaked! (That’s a paraphrase – not an exact quote of what I said!)…. The video has gotten us talking, and that can only be a good thing, unless we start arguing pointlessly! And, BTW, Benedryl is a poor person’s benzo! Thank-you, “lily c.”, and please keep reading, and posting here. You weren’t “derailing” – MY train has training wheels!…. LOL

    • Hey lily.c,

      Thank you for your comment.

      This same issue keeps coming up and I can’t really understand why, but I want to try to address it with commentary in one last ditch effort. It is frustrating for those of us looking to build a platform with the intention of gaining more understanding and action around iatrogenic benzo dependence to be repeatedly asked why we don’t focus on helping people suffering from all kinds of dependencies and addictions for a few reasons:

      1. It feels a bit invalidating and like we’re not being heard or the information isn’t being read, whether that is anyone’s intention or the truth or not. I’m not sure anyone who was personally affected by, say, breast cancer and who was trying to bring awareness to that specific form of cancer would ever have to justify why they weren’t out garnering support for leukemia or brain cancer too.

      2. We don’t relate at all and have no experience with addiction, as iatrogenic dependence is a completely different phenomenon. So why should we be expected to lump ourselves in with it or do advocacy for it when our efforts are better directed at what we did experience. Also, many of us are gravely ill and it takes all we have energy and effort wise to just manage what we do- taking on more causes would be impossible for many. I do, personally, advocate for dependencies to all psych meds, as I was a polydrug victim, and because the withdrawal and neurotoxicity is so similar they can be lumped together.

      3. There is so much misunderstanding and misinformation around iatrogenic benzo dependence alone that it needs to be separated and have it’s own platform so that it’s better understood and treated appropriately- and so that it stops happening.

      4. Being (falsely) grouped in with addiction has harmed our cause and resulted in more misunderstanding and mistreatment, so we’re forced to make a clear distinction in our activism around this topic. We don’t agree with the stigma around addiction, but also don’t want to be wrongly subjected to it, especially when our situation is uniquely different.

      Lastly, I have tried to think of a scenario or analogy that would be clearer or better explain the point. This is what I came up with. Say there was a household cleaning product that was approved as “safe” for humans to use by the EPA (or whoever approves these products). People began using the product in accordance with the instructions for use listed on the product and became gravely ill. Another group of people were inhaling the product in an attempt to get high from it. All of the families and individuals who were just cleaning their house with it as it was intended to be used came forward attempting to highlight for the public that this product had made them sick just from normal household use. The public then responded accusing them of only getting sick because they were inhaling it like the other group or asked them why they aren’t advocating for help for the people who are inhaling it when all they want is to have a platform to warn and educate others about the dangers of this product when used as directed in the home so that innocent people know they’re at risk. When they’re (falsely) grouped in with the people inhaling it, the general public writes them off and doesn’t think they’re at risk using the product anymore- the activism failed. They can still have compassion for the addicts who need help with their addiction to and behavior of misusing the product without taking that on as their activism work, as it is a completely different issue and one which they most likely don’t relate to.

      Do you see the point I’m making with that example? I hope it offered some kind of clarity around it.

      Thank you again, lily.c, for your comment and best to you and all who commented here. J.Doe

      • *I should also add that because the people (who are attempting to expose approved use of the househould cleaner as dangerous) are misunderstood and falsely grouped with those who abused the cleaner, they can’t obtain appropriate medical help from their doctors/the medical community in being treated for the illness it caused. How frustrating and scary that would be to be dismissed at every turn when you’re gravely ill- that is what we as iatrogenic benzo victims have experienced similarly.

        • Whether it’s “iatrogenic dependence”, or “illicit heroin/opiate addiction”,
          is a distinction without a difference. Whether a person is “addicted” to heroin, or “dependent” on MD Rx’d benzos, the TREATMENT should be THE SAME….. Regardles of “which camp” you might think you are, philosophically, you harm the “OTHER” camp, by refusing to see these simple truths. We’re all in the same boat, and it’s the same deluded, greedy system which imperils us ALL…. If we rock our little life boat enough, we will ALL be swimming…. Maybe we’d all do better to all row together?….

          • Whether a person is “addicted” to heroin, or “dependent” on MD Rx’d benzos, the TREATMENT should be THE SAME…..

            Sure – if you want a lot of people to die for no reason.

          • 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.

  5. Well in America we have the “justice” system for addiction and iatrogenic drug dependence where judges and lawyers practice medicine without a license. Instead of medical tools they have firearms, handcuffs and cages for hurting people. They don’t give a crap about us. We are cash cows first for pharma then those psychos with no souls.

    How many of us get A DUI or other trouble after using alcohol trying to treat the neurotoxicity after they cut off the benzos and get wrapped up in that wrenched system that labels everyone an addict as they practice medicine in the courtroom without a license ?

    How many of us get caught up in that wrenched system after the doctors cut us off and we have to goto the street to purchase benzos to avoid the neurotoxic taper to fast trip to hell ?

    Hopefully if their is a God, and I think there is, all the people that work in that system that know the harm they do but are “just doing their job” go to hell in the end.

    This might be a topic for the forums but I was thinking of becoming a drug counselor but one thing I would NOT do if I worked at a treatment center is work with or talk to probation officers or any of those sociopaths from the court system. Well besides maybe lying to them but I will NOT take take part in that wrenched souless system in any “way shape or form” as they say. I have to look into it but I think that’s part of the job and I won’t do it. I won’t rat on my clients “doing my job”. Sucks cause I think I would be a good counselor.

    Addiction, dependence, iatrogenic neurotoxicity, what ever we call it is not a crime.

    I know, I lived and survived it. The only crime was what they did to me.

  6. Another fun one is going to the ER with benzo iatrogenic neurotoxicity hoping to just get a dose and a script and not a trip up to the psychiatry department for lock up were they push a neuroleptic pill lobotomy by calling the benzo iatrogenic neurotoxicity bipolar and “mania”. It was hit or miss. One time I got out of there by telling them I really think I left my stove on and needed to hurry home.

    I am so glad this is all over. I made it back from hell. 6 years now.

  7. Also, Ally, upon rewatching the vid…I am left with the impression that BN occurs only when the discontinuation of the benzo was done quickly…

    Not always; or in my case: I did a year and a half dry cut off 0.5 mg of Klonopin….now starting my 27th month after jumping and I’m still markedly impaired.

    And to bcharris, above–all supplements (with a few exceptions) jack up my symptoms, especially B vitamins. There doesn’t seem to be a shortcut thru this hellish experience…

    • I think because the articles were addressing the problems with misdirected protocol– the author focused primarily on rapid cessation and CT as it related to addiction protocol. It’s my understand that rapid cessation and CT tend to be more dangerous. J, Doe is aware of cases where tapers went on to experience protracted suffering, as am I. It can’t be underscored enough though—These drugs can be ruthless no matter what exit strategy one takes.

      Thank you for mentioning that.

  8. OK, I have a question. Actually, I have a LOT of questions. Really, I thought I knew what I was talking about. I’m REALLY, ACTUALLY, OK. Yeah, I’m ok, but I’d be *OK*, if I had a clonazepam….
    It’s only been a very few short months that I’ve been reading about “benzos” here on MIA, and I sure have a lot to learn. Yes, I watched all 14+minutes of the video above. It really wasn’t helpful to me, even though I appreciate the thought, and effort….My experience with clonazepam began in 1994. I actually began tapering OFF, the day I went ON it….I had a darn good MD, who was helping me both get off, and stay away from, a whole bunch of other, more dangerous psych drugs. I was able to easily get off of, and stay off of, some serious neuroleptics, and all the other garbage of “polypharmacy”. And I thought that was a good thing – and it was & is – but I’m having trouble with the whole “benzo” thing. That’s all I feel like writing now. But I’m glad I did. Maybe I’ll see something else here, later. Thanks, people.

  9. Doctors have known about the addictive, er, excuse me, dependency issues associated with benzodiazepines since at least the 1980s. There was I belieeve, in fact, a scandal surrounding the matter way back when. Psychiatrists should refrain from prescribing them with the abandon with which they do prescribe them. The issue here, as I see it, is whether your pusher has a medical degree or not. If it is a kid on a street corner you get your drugs from, well, I guess that is “addiction”, huh? And thus to be looked down upon. However if your pusher has a medical degree, that is dependency inducing medicine. Also, whether or not you are going to class anxiety and panic in a “disease” category when both conditions can be dispelled through learning and experience. The keyword here is iatrogenic. Benzo users are not the only drug dependents that are in denial as to the extent of their dependence. They’re only more snobby when it comes to terminology. Your addiction definition was way off base anyway. It’s not like genetics determines who will be addicted to heroine or not. A person must first decide to take the drug. Benzo addiction, benzo dependence; to-may-toes, to-mah-toes…

    • Frank,

      I’m not sure where to even begin in responding to this one as there is so much wrong w your comment.

      Do you honestly believe that people obtaining drugs on the street illegally and abusing them- taking them in large quantities and to get high- aren’t aware that they are doing something dangerous? And that there’s no difference there between people who are prescribed them and who take them as directed, and who are duped into thinking they are “medicine” and “safe” and “needed for your condition” as a “treatment”? That the people who took them as prescribed and innocently, thinking they were helping themselves by being a compliant patient, aren’t in a completely different situation in regards to not requiring help/intervention with their cravings or behavior, but rather just in finding a safe way off of the drugs (through taper) once they discover that they’re ill from the tolerance that has developed physiologically in their body from taking them past the recommended 2-4 week time period? How can they do a safe taper if every medical provider who needs to be prescribing the drugs for a safe discontinuation thinks they are drug-seeking addicts when that is not true?

      I assure you no one is in denial. I have been free from the benzo drugs and no longer dependent for over 3 years as has Ally, the creator of this video and accompanying article. In fact, I personally was the one to discover what was wrong with me (tolerance and dependence to benzos after being prescribed them well past the recommended 2-4 week guidelines) after countless doctors and specialists failed to diagnose the drugs as the cause of my decline and illness. And the instant I knew what was causing my sickness, I did something about it and began the process of undoing the damage that was done to me.

      This is not about being snobby, it’s about being accurate. Your assumptions here just further shows how much more work there is to be done in regards to awareness around this issue, as people like yourself completely miss the point. Did you even read the articles? People need to know that even if they take these drugs (presented as “medicines” by the their doctors) that they are at risk.

      Lastly, we didn’t write the definition for addiction (or any of the other definitions presented). They were written by a committee composed of many different medical associations (listed in both the article and video). Whether we agree with their definition of addiction or not (I personally think it’s off base) doesn’t mean that we can change the content of a quote in presenting what medicine believes addiction to be.

      The language is not just a matter of semantics or of “being a snob”, there are real and dangerous implications for flubbing the terminology.

      J. Doe

      • I agree to disagree on this one, but it’s a yes and no sort of disagreement. Physicians, psychiatrists in particular, should not be prescribing benzos the way they do. That a lot of deception goes along with the business almost goes without saying. I’m not saying that there isn’t a correct or safe way to withdraw from benzos, nor that people don’t need to be language sensitive in the matter.

        As for the definition of addiction, now psychiatrists have gotten the even more troubling concept of behavioral addictions into the DSM. If you buy the concept of behavioral addictions, as certain addiction agencies do, then it makes the addiction matter a whole new ball game. Watch out. Playing a computer games is already addiction in the orient I hear while illicit sex has a new defensive ploy.

        There is jargon and there is plain speech. Psychobabble has it’s place, especially once the mental patient gloves have been slipped on. Biopsychobabble, too, I’m afraid. I’m contentedly in another place.

        • In order to reach the medical community, we have to use their language to attempt to explain what’s happened to us as a start, whether we like it or agree with it or think it sums up our condition accurately or not. It’s a start. It doesn’t mean we endorse or totally agree with the provided definition of addiction that is supplied along side the definition of dependence by the medical community. It just means that we’re attempting to reach them using their own diagnoses and terms to attempt to get their understanding around what happened to us so that we can garner recognition and change around a problem that’s been permitted to persist for over 50 years and has claimed and maimed countless lives. If we were to just randomly invent our own language/terms that we felt more accurately describes our condition in lieu of using the currently accepted medical terms/rejecting them altogether, I’m not sure it would be recognized at all. We have to start with what medicine recognizes and go from there. There are efforts in our community to give this syndrome a name and to get away from addiction/dependence altogether, but the efforts must be recognized as legitimate by medicine if they are to affect change in the long run.

  10. How discouraging; I woulda thought that here on MiA there could be some sort of opening for educating those who interact with benzo *victims* (I know how you hate that word, F) on a professional or personal basis, and maybe–just maybe we could get the support and services that are so desperately needed.

    How many suicides from misdiagnosis?? How many families ruined, jobs lost?

    It looks once again, that only those who know the horrors of the iatrogenic damage caused by *following the doctors orders* (I was told over and over by my ‘health care’ practitioner “It’s such a tiny dose!! You don’t have an addictive personality!! This combination is *working* for you!!) are able to support one another. But how do we find one another??? Not everyone who deals with PAWS/BN has access to the internet…or a ‘health care’ provider familiar with the syndrome (overwhelmingly so, thus this and J. Doe’s articles) How many of us are diagnosed with DSM categories and dismissed, compromising our health with meds and treatments that aren’t relevant or harmful?

    How many people die? I know of 3 in my own community (none of them recognized, of course)…Benzos not only mess with your physical body in MANY numerous ways but they really do a number on your head…and there’s a pattern to it; as the years go by, I see the anguish of suicidal ideation, the acute loneliness, the despair…the loss of hope and the support of family and the breakup of marriages; and the all too frequent re-instatement of the benzodiazepine.

    This article is about benzos–there are others here about opiates, and the combination of the two….but this article is about this one thing.

    GAH!

    • Frank and BPDT

      I oppose the dismissive and sarcastic way you are addressing the vitally important distinction being made between iatrogenic dependence and addiction. For survivors currently dealing with trying to safely taper off of benzos these can be life and death questions based on how they are treated by the medical establishment.

      And due to both Psychiatry’s (and mainstream medicine’s) horrific treatment of those dependent on benzos these distinctions may make the difference between successfully liberating themselves from these drugs or remaining stuck in a disabling iatrogenic maze. We are only in the earliest stages of knowing the true damage done by this category of drug as Humanbeing has pointed out.

      I have nothing but the deepest respect for both the scholarship and activism of JDoe. Ally and others championing this cause. They represent one very important sector within the benzo/damaged/survivor community and must be taken serious, learned from, and supported.

      If people have read my previous comments in past discussions regarding this topic you know that I have some important differences with some aspects of how JDoe + others approach this issue. We have absolutely no differences related to the definitions (iatrogenic dependence and addiction) and the fact that a significant sector (possibly the vast majority of benzo victims) fall strictly into the category of iatrogenic dependence where not even a hint of addiction resides.

      While there is (and needs to be) a “black and white” scientific distinction made between the definitions and concepts of iatrogenic dependence and addiction, there are many “grey” areas when we deal with some people’s actual life experience. Where JDoe’s analogy breaks down is when you consider the fact that some people who had prior existing addiction problems have also had iatrogenic dependence on benzos added to their already difficult lives by the medical malpractice of improper prescribing. There are also some people who have suffered from iatrogenic dependence on benzos who have migrated into the misuse or abuse of other substances, perhaps trying to cope with or “self medicate” the horrible effects of these drugs. This is where and when everything becomes even more complicated for this sector of survivors. It also raises important questions about how we approach building a united struggle to address the whole benzo crisis head on.

      This important topic bears future exploration for which I am writing about as we speak. I will not respond any further to this particular aspect of the topic at this time but look forward to a respectful discussion in the future.

      My main reason for commenting is to criticize the sniping and ridicule and support JDoe’s and other’s activism on this important issue. Frank and BPTD, you are better than this. Please listen and learn, apologize, and then get back on track and raise your game.

      Richard

      • I’m not even going to ask regarding what it is I did, er, or said. I think the important thing to do is to see that harm is kept at a minimum however one is going to frame the issues.

        I’m not apologizing. I’m not selling “mental health”, “mental health treatment” or “benzos”. I’m content not to be selling “mental health”.

        I do think when the issue is keeping harm at a minimum, and no harm, of course, is the minimum, something you don’t get with any chemical, the discourse makes sense. On the other hand, physiological dependence is my definition of addiction. If addiction isn’t physiological dependence, what is it? I think it’s our handling of the matter that is really the issue here.

        Blame me, if you will, for not being a “mental health” professional. Guilty as charged. I don’t imagine you could make the same claim.

        • I’ve had problems with drugs being forced on me I didn’t want to take. I wouldn’t take them outside of that involuntary arrangement. I’ve been a great deal luckier than other people I have known.

          Drug withdrawal, although it may have been a problem, was no major problem for me. I didn’t want the drugs in the first place. When drug withdrawal is a problem, when dependence is the word used, it is what it is.

          I don’t need to “use” human services. I know other people feel differently. I’m not selling “sickness”, and I’m not selling drugs to manage those “sicknesses”. If people want to do so. Okay. We’re talking about some of the consequences of doing so. Benzo….whatever.

          • Frank,

            Here is where the dialogue is going off track, as I see it. You say, “On the other hand, physiological dependence is my definition of addiction. If addiction isn’t physiological dependence, what is it?”

            These are two different issues with some overlap- physiological/physical dependence occurs in addiction- but it can also occur completely independently of addiction (i.e. beta blockers, corticosteroids, SSRIs to name a few- all points discussed in the articles). Also, while addiction as a diagnosis can be used to pathologize, dependence is just an expected physiological consequence/outcome of taking a drug long-term (and in benzos, longer-term than recommended).

            You may have your own definition of what you *think* or want to believe they are- but the fact is they are distinguishable (hence our including of the definitions and examples of the differences between the two).

          • I don’t see the dialogue, being dialogue, as going off track, not so long as there are multiple “tracks”.

            Technical dependence can be literal addiction, and vice versa.

            Addiction is no diagnosis without a drug. Just saying. Yes, it can be used to pathologize, and that’s probably best avoided. So making two “disorders” out of one…well, you’ve heard of co-existing disorders, haven’t you? That one of the ways psychiatrists, and cohorts, make a living.

            I’m saying, yes, best not to pathologize, however we’re playing a word-game here, and I don’t think we’ve gone off course so much as there is disagreement regarding definitions. I would agree though that that treatment is best which does the least harm, and that not being attendant to that possible harm is a definite danger where withdrawal is concerned. Things can, that is to be said, by not being aware of such dangers, be made worse. We don’t need any more bad outcomes than we’ve got.

          • Let’s get one thing straight, drugs are not categorized as “addictive” because they got approved by the FDA. You can’t market drugs with “addictive” qualities. (We’re talking figurative addiction here, the substances we are referring to are literally addictive.)

            The way I see it, I disagree with you only on terminology, but I agree with you on methodology. Even where terminology is concerned there might be reason for stretching things, but when I say stretching, it is the truth that is being stretched. I worry about the quantity of lies we might have to contend with.

          • BPDT

            You are one of the most prolific, well-read, and insightful commenters at MIA. To chime in on this discussion with a one liner joke about the “grammar police” when one of the key topics is “definitions” came across as a form of ridicule or trying to make light of a serious subject. If you did not mean this to be disrespectful then you are at least guilty of some form of insensitivity.

            Respectfully, Richard

          • Richard,

            I’m an English major and cannot stand to see “you’re” written as “your”. Nothing more, nothing less. Relax. I will not apologize for this; I haven’t done anything wrong.

            I still like your writing too, by the way. You have a great heart.

          • Because I like you Richard, I will say sorry if it offended you personally. I wouldn’t say it for anyone else 🙂

            The truth is, I didn’t even read the comment thread in full at the time I made the comment, and of course didn’t mean to offend anyone. I have read the article, but I don’t feel I know enough about the topic to comment.

            I just wanted to correct Frank’s spelling error. That’s how much it annoyed me when I saw it on the new comments list. I was seized by this burning desire and couldn’t stop myself. This probably means I have a disorder (“grammar obsessive compulsiveness?”) that needs psychiatric treatment.

          • Actually I can relate. What drives me crazy for whatever reason is people using “its” and “it’s” interchangeably & improperly. There must be a drug for that somewhere.

          • I appreciate your efforts here, Richard. Thank you. While I believe that BPDT didn’t intend any harm, I for one felt that his comment, in the context of this conversation – and especially Frank’s misguided musings – was pretty callous and dismissive.

  12. We need some META-analysis here, folks! You can argue about “addictiion” vs. “dependence”, and whether it’s the doctors fault for iatrogenic dependence, or the users fault for getting the high of addiction. Same difference. And, where ever you decide to place yourself on whatever imaginary, counter-productive spectrum of “dependence/addiction” – aren’t you ALL just playing into the hands of our common enemy, which is negligently and malfeasantly prescribed DRUGS? DRUGS which create BOTH addiction *AND* dependence? Who cares which is which, or who is who? Pain is pain is pain….
    And, our erstwhile medical mafia pumps the DRUG$ fpr $Profit, ju$t the $ame….isn’t *THAT* the *REAL* ISSUE here, folks…????…. So you can psycho-babble and gobbledygook, and get all *PC* enlightened, but Pharma & the AMA, & APA, and etc., ALL just DIVIDE & CONQUER.. Go ahead, help the power$ of darkne$$, *DRUG$*, and the human mi$ery which they bring….divide us, and conquer us, for profit. Way to go, people…. Isn’t what missing – what’s needed – better treament for ALL persons in the system? I’m tired of all you keyboard warriors. How are YOU helping ME, by sniping each other on here? Some frickin’ “solidarity for the cause”….
    etc.,etc.,etc.,………..RSVP?______________________________

  13. BPDT

    Thank you for engaging in this testy exchange of feedback. Yes, it did bother me, but it may have bothered the authors and activists trying to raise this difficult issue even more. I accept your explanation that no disrespect was intended. I hope you participate in future discussions on this topic; I do value your viewpoint very much and the passion with which you approach these struggles.

    Richard

  14. I understand the issue here quite well – the semantics of addiction versus dependence/tolerance. I know what it is like to be in an ER in a suicidal state caused by dependence on prescribed benzos (clonazepam). I know what it is like to be given a sham dual diagnosis (addicted and mentally ill) by countless individuals in the mental health care system – none of whom had a clue who I was, where I have been or what was going on in my life. It was incredibly demeaning, but, more importantly, it was dangerous.

    I spent 3 weeks under suicide watch in a psychiatric hospital where I was yanked off 4 mg clonazepam and treated like an addict. I have no idea how I even survived that experience and the subsequent 2 1/2 years of withdrawal hell. It was horrendous.

    I think the distinction between addiction and dependence is important just as the distinction between “mentally ill” and “sensitive to all that is life” is also important. Our culture needs to understand taking any kind of prescribed psychotropic drug makes us neither an addict nor is it proof that we are mentally ill (whatever that even means). Sadly, most people do not “get it” until they personally must bear the suffering caused by the medical community and its insane practice of prescribing a pill for every slight discomfort or problem a person may have.

    I have been well for 3 1/2 years and spend time helping others through benzo withdrawal. I do a lot of writing and recently wrote an article about benzodiazepines for an addiction blog that is viewed by many people. I was very clear to make the distinction between addiction and dependence; however, the mere fact that my writing appeared in an addiction blog created ire in some individuals. I was accused of perpetuating the myth and doing a disservice.

    Would it be better to refrain from posting about iatragenic illness in an addiction blog?

    • I want to answer that question. It seems to me, from both direct personal experience with benzos, (clonazepam, .5mg, 3xday, for 15+years, on a long, slow taper….), that the real “distinction” between “addiction” and “dependence” is whether an MD wrote a Rxscript for a pharmaceutical(“dependence”), or whether the person first got “illegal drugs”, from an illegal “drug dealer”(“addiction”). But I say that is a ridiculous and essentially arbitrary distinction. I could choose right now to go out and drink alcohol, or try to find an “illegal drug dealer” and get some benzos, or heroin, meth, etc., or go to a “doctor” or “clinic”, and get an Rxscript for some pharmaceutical of ALL or ANY kind. But, regardless of which I did, I’d still be seeking some chemical substance made by somebody, that I could ingest, to change my experience and perception of myself – and probably money would be involved. There’s NO REAL DIFFERENCES AMONG THEM. You can get all hurt being called an “addict”, when it was Doctor-prescribed benzos that created your “dependence”. Or you can get all hurt about being called a DEPENDENT DRUG-PUPPET. If you wanna be free to be a dependent drug puppet, fine by me. I prefer to be a FREE JUNKIE-ADDICT….. Does **THAT** answer your question?_________________?…..

      • Thank-you, “oldhead”….Sometimes, what we most NEED to hear (or read), is what we most DO NOT WANT to read or hear. I truly believe that everybody posting here means well, and that we ALL really do have OUR best interests in mind…. And, there are some “issues”, and “phrasings”, or “words”, that we just won’t ever all agree on. But I don’t want to see us get hung up on that disagreement. I wanna repeat what I said about “divide & conquer”. There are those persons of greed, ignorance, and bad intent, that do get a sick jolly out of seeing folks suffer. They are
        Pharma Executives, and *some* arrogant and narcissistic shrinks. What WE ALL MOST NEED, is more education about ALL drugs, whether pharmaceuticals, or “street drugs”. And much more understanding and better treatment from the medical system, and the larger society. My recovery is NOT dependent on what others DO, or do NOT call something…. And, yes, I DO hope my words help those who most need help. I’m here to comfort the afflicted, and afflict the comfortable. My name is Jesus. OK, I’m kidding about the “Jesus” part! > LOL <

  15. I understand the issue here quite well – the semantics of addiction versus dependence/tolerance. I know what it is like to be in an ER in a suicidal state caused by dependence on prescribed benzos (clonazepam). I know what it is like to be given a sham dual diagnosis (addicted and mentally ill) by countless individuals in the mental health care system – none of whom had a clue who I was, where I have been or what was going on in my life. It was incredibly demeaning, but, more importantly, it was dangerous.

    I spent 3 weeks under suicide watch in a psychiatric hospital where I was yanked off 4 mg clonazepam and treated like an addict. I have no idea how I even survived that experience and the subsequent 2 1/2 years of withdrawal hell. It was horrendous.

    I think the distinction between addiction and dependence is important just as the distinction between “mentally ill” and “sensitive to all that is life” is also important. Our culture needs to understand taking any kind of prescribed psychotropic drug makes us neither an addict nor is it proof that we are mentally ill (whatever that even means). Sadly, most people do not “get it” until they personally must bear the suffering caused by the medical community and its insane practice of prescribing a pill for every slight discomfort or problem a person may have.

    I have been well for 3 1/2 years and spend time helping others through benzo withdrawal. I do a lot of writing and recently wrote an article about benzodiazepines for an addiction blog that is viewed by many people. I was very clear to make the distinction between addiction and dependence; however, the mere fact that my writing appeared in an addiction blog created ire in some individuals. I was accused of perpetuating the myth and doing a disservice.

    Would it be better to refrain from posting about iatragenic illness in an addiction blog?

    • Hi humanbeing. I know very well the feeling of “eternal suffering,” and I fought hard not to believe the lie of “permanence.” It’s a horrendously hard place to be.

      Actually, I have written extensively about my experience and healing. I posted a success story on BenzoBuddies in February 2013 at 30 months off clonazepam (although I was well at 22 months).

      I have had no waves at all. I began drinking coffee again at about 14/15 months off (after having none for 2 years). I can travel anywhere I want now. I would love to travel and meet many of the people I’ve “met” in wd and have been helping. The only thing that stresses me is others around me getting stressed over things that are trivial. (If they only knew how bad a person can really feel.)

      Alcohol is absolutely forbidden. There is a great deal of evidence that it may act as a positive allosteric modulator much in the same way as benzos. I don’t ever want to chance going through that hell again.

      I could write many pages here about my experience. I do have a website that has been designed primarily to give hope to those in wd from benzos or other psych drugs (even alcohol – since I also drank for many years). I have about 40 writings there plus a few dozen videos done by a few people who have healed (there are lots of other healed people who seem to be too shy or afraid to do videos or just don’t know how). There is a contact email address on the website. The web address is http://www.merryjoyousfree.com

      Come see us if you haven’t yet.

  18. I am disappointed at the unsupportive tone of some of the comments on this thread. Language absolutely does matter, and if I’d become accidentally dependent on a drug that a doctor prescribed to me with assurance that it was safe and with no warning about addictive properties of the drug, I’d be totally pissed if people lumped me in with someone who decided that using street drugs was a good way to manage their emotions or physical pain or to have some fun or whatever. The two are certainly very different. And while I agree that the “addiction language” that has become accepted in our culture has some rather disempowering aspects that should be changed, it doesn’t alter the fact that a doctor lying to you about the drugs you’re prescribed is a very different process than knowingly engaging in taking a drug that you already know to be dangerous and/or addictive. I don’t think it should be too hard to make that distinction, and am having a hard time understanding why some posters seem to be unwilling to acknowledge that very simple error in grouping that I think would very naturally lead members of the iatrogenic group to be massively pissed off.

    The real lesson of all this is to not trust your doctors’ assurance that anything is safe. I learned this early in my life when a doctor almost killed my dad. I don’t take anything I haven’t researched, and most of the time when I research it, it leads me not to take it anyway. Unless death is the alternative, I avoid drugs like the plague, as they are one of the biggest causes of death in the USA, even when taken as prescribed. It’s caveat emptor in the medical world!

LEAVE A REPLY