When my relationship to these ideas began (in benzo neurtoxicity) I thought the method of ingroup/outgroup, mentally healthy/mentally ill categorization was all wrong. And based on the paradigm of pathology I still do.
I think it wasn’t until my friend was horrifically manipulated by a person who could easily be diagnosed with NPD– that I’ve become more flexible with yes, unpathologizing personality disorders and giving them a label that is more based in biology. I just can’t read what I’ve read about the personality “disorders” and think that there shouldn’t be some type of labeling for that. Particularly NPD, APD. Neurodivergent was a word that I heard some people in the community use and it seems more appropriate than mentally ill. Happy to hear another perspective though. There is still so much reading I haven’t been able to do because of this brain injury.
If people see the world in a hierarchy where they are on top and others are below– and that is built into their programming, it seems almost irresponsible not to have language to represent that. Just like with anything, i think there is a spectrum of experience and some who have these experiences can carve out some self awareness– but many can not. Listening to the stories of many children with parents who are diagnosed with NPD is pretty heartbreaking, and I found that I couldn’t tease out this awareness from my beliefs against having a standard of mental health… or a state of being neurotypical.
I suppose I was wrong to use neurodivergence to describe depression and anxiety. I do like it better than mentally ill as an overarching term.
I really enjoyed your perspective on this subject. It’s one that I’ve stewed over a lot.
I start to get itchy when people oversell the idea that depression and anxiety have a ton of stigma (ALREADY!)–as a response to conversations around iatrogenesis–when almost every trendy Youtuber is being sponsored by Betterhelp and talking about their “mental illness” of anxiety and depression. I don’t think there is no stigma towards neurodivergence (“mental illness”), but in comparison to iatrogenisis– along with the glaring absence of all attributes of societal acceptance and support– Like I said, I get itchy.
I guess in a way it’s frustrating that in speaking out about iatrogenesis is necessitates a conversation about necessary use of meds and where the government should draw that line. Some days you just want to say fuck these drugs for the life and body disfigurement and not run it past anyone’s filter. Thank goodness for support groups.
The candy bar analogy was spot on for people who can bare to live chronically on these drugs. Great piece!
I totally hear what you’re saying–but please understand me when i tell you I have been this way since I was a child and it has only intensified. I hadn’t heard the expression BPD until I was 22. I have been lead down the path you are talking about with other diagnosis– but the (symptoms) of bpd are as intrinsic to me as my eye color. I am so easily hurt by life that it’s sometimes hard to function. And now that I’m drug injured I hardly function at all.
I think it’s okay to own the symptoms of BPD as your bag of rocks and ask yourself, okay knowing this, how will I become
as self aware as possible of my pain so that I’m not a reactionary person. It’s okay to have extreme pain–it’s not okay to take that pain out on others. Denying I have these symptoms would hinder my ability to form a more nurturing relationship with them so that i can be a better friend and partner.
*I forgot to mention the main part of my experience is that normal interactions, rejection, even being made fun of for me sometimes feel like I’m dying. I would prefer to think of myself as suffering from trauma then disordered. I’m disordered because I feel pain so acutely? Who is to say we feel pain incorrectly? You’re right– it’s totally subjective.
Wow, just wow. What an amazing piece. As I claw my way through one of my worst waves of benzodiazepine withdrawal syndrome, which has changed my physiological personality entirely (I think the real me is still in here somewhere)– I have continued to reflect on my authentic personality which has been labeled with BPD. I know now looking back that I did live with the symptoms of BPD and I’ve tried to examine those symptoms even from this extremely compromised state. I would say I am almost forced to pick them apart in this benzo injured state as one of the the symptoms of benzo injury is obsessive self reflection.
The conclusion that I’ve come to is that these symptoms do make me different. But that doesn’t mean I am wrong or fucked up. I was reading over your article saying “yes, yes, YES!” Society is painful man. People in groups can be cruel (It’s even supposed to be “funny” in a show like Parks and Rec). The standards for partnership and friendship can be really grueling and painful. I’ve almost never liked groups of 3’s. I always feel like the person cast out.
I suffer/ed more from the mind reading stuff, and the punishing instinct. Which I have never been more self-aware of and on top of in my life. I do think this is me though– I’m not sure what that means, but I’ve always felt this way. That groups are lonely and that people will leave you. And that certain mistakes shouldn’t happen. But now I know that I am this way, and I take responsibility for it, and can make strong ethical choices to be healthy with people. A lot of it has to do with coming to the awareness of possibly being wrong about an argument. If only there was a magic bullet to get you there as fast as possible.
Thank you for writing this. Wish we could connect on Instagram or something. I’m @ScoutSeas
I wanted to leave a comment regarding your testimony in Massachusetts. Your contribution was thorough and highly sensitive to the unique difficulties IDs face. I appreciate your attention to detail, and feel very moved by the level of care you took.
Mind the many typos. I get very revved and weak when my misunderstood illness continues to be arbitrarily corralled into an adjacent experience. This practice has history on its side and yet people actually suffering from I.D. (And the lived consequences of addiction conflation) are breaking our backs for some specialized recognition, and we have to argue online with presumably relatively functional people who can work. It’s pretty breaking.
I think this was well-argued. I disagree with many of your premises. My damaged CNS doesn’t allow me enough cognitive ability to argue my points as effectively as I would like to–but here’s my best shot.
First. Asking for individual recognition for iatrogenic dependency (I.D.) is not the same thing as distancing or perpetuating current stigma toward addicts. I am comfortable saying that that modern stigma toward addiction alone pails in comparison to stigma toward ID (or addicts who experience intersection with I.D)– (which includes the misdirected and unacceptable stigma that addicts receive) AS WELL as stigma around not fitting into a well-defined, well understood category of illness. Let me be clear, addiction stigma pails in comparison because I.D. stigma included addiction stigma AS WELL other kinds of stigma.
I can’t begin to explain how traumatizing it can be when you are no longer taking a drug, or you are actively tapering off of a drug with no other goal than to be off–and your family member, partner, friend, or acquaintance calls you an addict and precedes to bully your taper by using addiction language and addiction protocol.
Not to mention the protocol that comes hand in hand with addiction protocol DOESN’T benefit Iatrogenic dependency or those who feel they have addiction to benzos. Stigma is one thing, but protocol can kill you instantly. And language informs both.
Second, intersection is not the same thing as inter-changeable.
I have friends in the Benzo community who have legitimate addiction to Opiates (as you mentioned). I would never distance myself from these individuals, and I actively and compassionately acknowledged their experience with drug abuse and the psychological/pathological drive to keep using. Is it too much to ask for the same for my unique experience (which yes intersects with theirs)? I know some people who have Lyme disease who were inappropriately placed on a benzo and now suffer from I.D. Should I group their Lyme disease in with my I.D.? If the protocol for I.D. might negatively affect their Lyme disease. Absolutely not.
Third. it’s not “inconvenient” or “uncomfortable.” That’s reductive. It can be deadly and cause I.D.’s to feel so misunderstood that we often: rush off our drug, flee or are actively kicked out of our homes, and commit suicide. If you are going present an argument about how I.D.’s are recognized you might want to begin be recognizing our authentic experience as one of being in a state of constant survival. We aren’t really afforded the tolerable sensatio of feeling “uncomfortable” about this.
“It is important to note that a sizeable percentage of benzodiazepine dependents do exhibit patterns of abuse. The clearest signs are taking doses far in excess of what your doctor has prescribed, and/or having a history of abusing other drugs in the past or simultaneously with your benzodiazepine.”
Fifth. This statement may still be describing someone whose I.D. has gotten out of control and does not equate to addiction to benzodiazepines. And I think this really demonstrates the problem. I believe people who take their benzo as prescribed AND those who might take more than was prescribed STILL might not have embody the pathology of addiction. I.D. can compel some seriously desperate behavior particular in inter-dose withdrawal.
Fourth. Unity isn’t the main motivation of people who are in survival mode–a nd shouldn’t be when it’s to our detriment. Pointing out intersection is totally fine, and no one is arguing a lack of intersection. But it’s not okay to turn intersection into an equation. Authentic recognition and support are the only things we can and should care about. Unity if is for healthy people who don’t have to struggle for authentic diagnosis and help.
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.
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.
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.
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.
I’ve contacted you about this before. These words have very specific meanings. Not only do they have specific definitions that are being used incorrectly here, but they also illicit specific feelings (because all words–even seemingly harmless words from the DSM come with a frame-work and idealogy and sometimes often are linked directly to the idea of medication). Maybe the most important part of a word is the protocol that it enlists.
When doctors think that people are “addicted” to a benzodiazepine they think about using the protocol of addiction: Which is this person needs to start retraining the part of the brain that has a compulsion to take this medication (a totally valid and painful experience)– This person needs to start ridding this poison from their body. It does not however make doctors think of the medication as temporarily essential to the body… almost as if one was having an organ taken out. (you know all this because you’ve lived it).
As a person who is apart of our community I find it incredibly triggering that you don’t think better of using specific language that is not only inaccurate, but groups iatrogenic sufferers in with an entirely different illness. Addiction and dependence are absolutely not inter-changeable words. At it’s most basic level I never craved nor abused this drug. (the essential building blocks of addiction are not apart of my story). I am a firm believer you don’t bring down the master’s house with the master’s vocabulary. (unless an entire group of sufferer’s has decided to re-appropriate word like “queer” for lgbt people.) That’s not what’s happening here. Addiction being used here is pejorative (not inherently) but because it’s the word that ignorant doctors have applied falsely to our story, and thusly have cold-turkey withdrawal to many people.
I adore you as a writer. I sent one of your stories to 1 in several psychiatrists I saw begging for help with disability for PAWS (27 months in hell and counting). I think Matt and you are the keynote speakers for our struggle. This puts a lot of responsibility on you to make the necessary adjustments to the language you use so that other people are accurately represented.
I hope in time you will come to see why this word is problematic. You are not just speaking for yourself. Our community need leaders. We have enough people following.
It’s like I said to a guy on youtube: “I was no more “addicted” to a benzo than I would be addicted to a tree-branch falling on me. Accept in this case, a doctor prescribed my the tree-branch.”
When my relationship to these ideas began (in benzo neurtoxicity) I thought the method of ingroup/outgroup, mentally healthy/mentally ill categorization was all wrong. And based on the paradigm of pathology I still do.
I think it wasn’t until my friend was horrifically manipulated by a person who could easily be diagnosed with NPD– that I’ve become more flexible with yes, unpathologizing personality disorders and giving them a label that is more based in biology. I just can’t read what I’ve read about the personality “disorders” and think that there shouldn’t be some type of labeling for that. Particularly NPD, APD. Neurodivergent was a word that I heard some people in the community use and it seems more appropriate than mentally ill. Happy to hear another perspective though. There is still so much reading I haven’t been able to do because of this brain injury.
If people see the world in a hierarchy where they are on top and others are below– and that is built into their programming, it seems almost irresponsible not to have language to represent that. Just like with anything, i think there is a spectrum of experience and some who have these experiences can carve out some self awareness– but many can not. Listening to the stories of many children with parents who are diagnosed with NPD is pretty heartbreaking, and I found that I couldn’t tease out this awareness from my beliefs against having a standard of mental health… or a state of being neurotypical.
I suppose I was wrong to use neurodivergence to describe depression and anxiety. I do like it better than mentally ill as an overarching term.
Report comment
I really enjoyed your perspective on this subject. It’s one that I’ve stewed over a lot.
I start to get itchy when people oversell the idea that depression and anxiety have a ton of stigma (ALREADY!)–as a response to conversations around iatrogenesis–when almost every trendy Youtuber is being sponsored by Betterhelp and talking about their “mental illness” of anxiety and depression. I don’t think there is no stigma towards neurodivergence (“mental illness”), but in comparison to iatrogenisis– along with the glaring absence of all attributes of societal acceptance and support– Like I said, I get itchy.
I guess in a way it’s frustrating that in speaking out about iatrogenesis is necessitates a conversation about necessary use of meds and where the government should draw that line. Some days you just want to say fuck these drugs for the life and body disfigurement and not run it past anyone’s filter. Thank goodness for support groups.
The candy bar analogy was spot on for people who can bare to live chronically on these drugs. Great piece!
Report comment
I totally hear what you’re saying–but please understand me when i tell you I have been this way since I was a child and it has only intensified. I hadn’t heard the expression BPD until I was 22. I have been lead down the path you are talking about with other diagnosis– but the (symptoms) of bpd are as intrinsic to me as my eye color. I am so easily hurt by life that it’s sometimes hard to function. And now that I’m drug injured I hardly function at all.
I think it’s okay to own the symptoms of BPD as your bag of rocks and ask yourself, okay knowing this, how will I become
as self aware as possible of my pain so that I’m not a reactionary person. It’s okay to have extreme pain–it’s not okay to take that pain out on others. Denying I have these symptoms would hinder my ability to form a more nurturing relationship with them so that i can be a better friend and partner.
Report comment
*I forgot to mention the main part of my experience is that normal interactions, rejection, even being made fun of for me sometimes feel like I’m dying. I would prefer to think of myself as suffering from trauma then disordered. I’m disordered because I feel pain so acutely? Who is to say we feel pain incorrectly? You’re right– it’s totally subjective.
Report comment
Emily,
Wow, just wow. What an amazing piece. As I claw my way through one of my worst waves of benzodiazepine withdrawal syndrome, which has changed my physiological personality entirely (I think the real me is still in here somewhere)– I have continued to reflect on my authentic personality which has been labeled with BPD. I know now looking back that I did live with the symptoms of BPD and I’ve tried to examine those symptoms even from this extremely compromised state. I would say I am almost forced to pick them apart in this benzo injured state as one of the the symptoms of benzo injury is obsessive self reflection.
The conclusion that I’ve come to is that these symptoms do make me different. But that doesn’t mean I am wrong or fucked up. I was reading over your article saying “yes, yes, YES!” Society is painful man. People in groups can be cruel (It’s even supposed to be “funny” in a show like Parks and Rec). The standards for partnership and friendship can be really grueling and painful. I’ve almost never liked groups of 3’s. I always feel like the person cast out.
I suffer/ed more from the mind reading stuff, and the punishing instinct. Which I have never been more self-aware of and on top of in my life. I do think this is me though– I’m not sure what that means, but I’ve always felt this way. That groups are lonely and that people will leave you. And that certain mistakes shouldn’t happen. But now I know that I am this way, and I take responsibility for it, and can make strong ethical choices to be healthy with people. A lot of it has to do with coming to the awareness of possibly being wrong about an argument. If only there was a magic bullet to get you there as fast as possible.
Thank you for writing this. Wish we could connect on Instagram or something. I’m @ScoutSeas
Report comment
Richard,
I wanted to leave a comment regarding your testimony in Massachusetts. Your contribution was thorough and highly sensitive to the unique difficulties IDs face. I appreciate your attention to detail, and feel very moved by the level of care you took.
Thank you,
Ally
Report comment
Mind the many typos. I get very revved and weak when my misunderstood illness continues to be arbitrarily corralled into an adjacent experience. This practice has history on its side and yet people actually suffering from I.D. (And the lived consequences of addiction conflation) are breaking our backs for some specialized recognition, and we have to argue online with presumably relatively functional people who can work. It’s pretty breaking.
Report comment
I think this was well-argued. I disagree with many of your premises. My damaged CNS doesn’t allow me enough cognitive ability to argue my points as effectively as I would like to–but here’s my best shot.
First. Asking for individual recognition for iatrogenic dependency (I.D.) is not the same thing as distancing or perpetuating current stigma toward addicts. I am comfortable saying that that modern stigma toward addiction alone pails in comparison to stigma toward ID (or addicts who experience intersection with I.D)– (which includes the misdirected and unacceptable stigma that addicts receive) AS WELL as stigma around not fitting into a well-defined, well understood category of illness. Let me be clear, addiction stigma pails in comparison because I.D. stigma included addiction stigma AS WELL other kinds of stigma.
I can’t begin to explain how traumatizing it can be when you are no longer taking a drug, or you are actively tapering off of a drug with no other goal than to be off–and your family member, partner, friend, or acquaintance calls you an addict and precedes to bully your taper by using addiction language and addiction protocol.
Not to mention the protocol that comes hand in hand with addiction protocol DOESN’T benefit Iatrogenic dependency or those who feel they have addiction to benzos. Stigma is one thing, but protocol can kill you instantly. And language informs both.
Second, intersection is not the same thing as inter-changeable.
I have friends in the Benzo community who have legitimate addiction to Opiates (as you mentioned). I would never distance myself from these individuals, and I actively and compassionately acknowledged their experience with drug abuse and the psychological/pathological drive to keep using. Is it too much to ask for the same for my unique experience (which yes intersects with theirs)? I know some people who have Lyme disease who were inappropriately placed on a benzo and now suffer from I.D. Should I group their Lyme disease in with my I.D.? If the protocol for I.D. might negatively affect their Lyme disease. Absolutely not.
Third. it’s not “inconvenient” or “uncomfortable.” That’s reductive. It can be deadly and cause I.D.’s to feel so misunderstood that we often: rush off our drug, flee or are actively kicked out of our homes, and commit suicide. If you are going present an argument about how I.D.’s are recognized you might want to begin be recognizing our authentic experience as one of being in a state of constant survival. We aren’t really afforded the tolerable sensatio of feeling “uncomfortable” about this.
“It is important to note that a sizeable percentage of benzodiazepine dependents do exhibit patterns of abuse. The clearest signs are taking doses far in excess of what your doctor has prescribed, and/or having a history of abusing other drugs in the past or simultaneously with your benzodiazepine.”
Fifth. This statement may still be describing someone whose I.D. has gotten out of control and does not equate to addiction to benzodiazepines. And I think this really demonstrates the problem. I believe people who take their benzo as prescribed AND those who might take more than was prescribed STILL might not have embody the pathology of addiction. I.D. can compel some seriously desperate behavior particular in inter-dose withdrawal.
Fourth. Unity isn’t the main motivation of people who are in survival mode–a nd shouldn’t be when it’s to our detriment. Pointing out intersection is totally fine, and no one is arguing a lack of intersection. But it’s not okay to turn intersection into an equation. Authentic recognition and support are the only things we can and should care about. Unity if is for healthy people who don’t have to struggle for authentic diagnosis and help.
Report comment
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.
Report comment
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.
Report comment
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.
Report comment
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.
Report comment
Melissa,
I’ve contacted you about this before. These words have very specific meanings. Not only do they have specific definitions that are being used incorrectly here, but they also illicit specific feelings (because all words–even seemingly harmless words from the DSM come with a frame-work and idealogy and sometimes often are linked directly to the idea of medication). Maybe the most important part of a word is the protocol that it enlists.
When doctors think that people are “addicted” to a benzodiazepine they think about using the protocol of addiction: Which is this person needs to start retraining the part of the brain that has a compulsion to take this medication (a totally valid and painful experience)– This person needs to start ridding this poison from their body. It does not however make doctors think of the medication as temporarily essential to the body… almost as if one was having an organ taken out. (you know all this because you’ve lived it).
As a person who is apart of our community I find it incredibly triggering that you don’t think better of using specific language that is not only inaccurate, but groups iatrogenic sufferers in with an entirely different illness. Addiction and dependence are absolutely not inter-changeable words. At it’s most basic level I never craved nor abused this drug. (the essential building blocks of addiction are not apart of my story). I am a firm believer you don’t bring down the master’s house with the master’s vocabulary. (unless an entire group of sufferer’s has decided to re-appropriate word like “queer” for lgbt people.) That’s not what’s happening here. Addiction being used here is pejorative (not inherently) but because it’s the word that ignorant doctors have applied falsely to our story, and thusly have cold-turkey withdrawal to many people.
I adore you as a writer. I sent one of your stories to 1 in several psychiatrists I saw begging for help with disability for PAWS (27 months in hell and counting). I think Matt and you are the keynote speakers for our struggle. This puts a lot of responsibility on you to make the necessary adjustments to the language you use so that other people are accurately represented.
I hope in time you will come to see why this word is problematic. You are not just speaking for yourself. Our community need leaders. We have enough people following.
It’s like I said to a guy on youtube: “I was no more “addicted” to a benzo than I would be addicted to a tree-branch falling on me. Accept in this case, a doctor prescribed my the tree-branch.”
Report comment