You’ve quickly become a personal hero, Jennifer. These points have been playing out in online arguments for years from a minority of vocal withdrawal victims. As one of them, I cannot tell you how nauseating it is to be beaten over the head with commercial “anti-stigma campaigns” everywhere one goes today (like Logan airport as you’ve highlighted). When merely speaking to our harrowing experiences we’re told that we’re “pill shaming” by outlets like The Mighty and so many more. https://themighty.com/video/stop-pill-shaming-mental-health-medication/ The link between “anti-stigma” ->”seek treatment”-> “get on drugs” is explicit. Well, there must be something wrong with the commonly held syllogism that our “prolific mental health stigma” is preventing people from seeking “help” since between 1 in 4 to 1 in 5 Americans is taking a psychotropic drug. The hypocrisy is something else. If you want a lesson is stigmatization try being a vocal psychotropic victim 😉 Although we abound, we occupy practically zero mainstream space. We have no social or policy recognition (like disability). And whenever and wherever we speak about our experiences, we are invariably met with delegitimizing and unsympathetic “but, buts” as people struggle to uphold their pre- programed schemas. Good times. I’m not even getting to the decision to publicize my name along with my story and these minority views. I refuse to be ashamed, even if it may mean poverty. Report comment
You’ve quickly become a personal hero, Jennifer.
These points have been playing out in online arguments for years from a minority of vocal withdrawal victims. As one of them, I cannot tell you how nauseating it is to be beaten over the head with commercial “anti-stigma campaigns” everywhere one goes today (like Logan airport as you’ve highlighted). When merely speaking to our harrowing experiences we’re told that we’re “pill shaming” by outlets like The Mighty and so many more. https://themighty.com/video/stop-pill-shaming-mental-health-medication/
The link between “anti-stigma” ->”seek treatment”-> “get on drugs” is explicit. Well, there must be something wrong with the commonly held syllogism that our “prolific mental health stigma” is preventing people from seeking “help” since between 1 in 4 to 1 in 5 Americans is taking a psychotropic drug.
The hypocrisy is something else. If you want a lesson is stigmatization try being a vocal psychotropic victim 😉 Although we abound, we occupy practically zero mainstream space. We have no social or policy recognition (like disability). And whenever and wherever we speak about our experiences, we are invariably met with delegitimizing and unsympathetic “but, buts” as people struggle to uphold their pre- programed schemas. Good times.
I’m not even getting to the decision to publicize my name along with my story and these minority views. I refuse to be ashamed, even if it may mean poverty.
SO glad to see this. Let’s celebrate our successes but we can’t let anything slide at any turn.
I forgot to mention, there is the below study which examined 66,000 BZ patients in the Massachusetts Partners health care system from 2011-2012. It found that “clinicians prescribed benzodiazepines and high-dose benzodiazepines more frequently to patients at higher risk for benzodiazepine-related adverse events. [ e.g. COPD and substance abusing patients]. Benzodiazepine prescribing was associated with increased healthcare utilization.”
This undercuts Salzman’s point that “he teaches prescribing habits to doctors that this bill aims to correct” (i.e., for cases where long- term use is thought of as “appropriate” for certain populations).
Thanks for this. I’ll give it some study.
There are so many credible studies speaking to the ill health associated with BZs. Some of my ‘favorite’ names include: “Benzodiazepines revisited- will we ever learn?”: a meta -analysis that looked at 60k references conducted by BZ expert, and all around good guy, M. Lader. “What is the point of guidelines? Benzodiazepine and z-hypnotic use by an elderly population.”: found the 25% of elderly Norwegians were prescribed these drugs in 2012. (They are on The Beers List of meds inappropriate for the elderly, the largest group of consumers). And, “Not again: BZs Once More Under Attack” by Carl Salzman. ..So weird people keep reporting there are problems with these drugs!..
Hi Snowy Rhodes,
Yes: as others have pointed out, this proposed legislation does not take away anyone’s benzos. What it does, is call for better informed consent/ warning that prescriptions for longer than 4 weeks are harmful. The drug manufacturers already know that. In the case of Ativan, e.g., the small print in the pamphlet says that it should not be taken longer than a few weeks. We want to move the warning to the bottle. As noted in the blog, Upjohn’s own trial shows far worse outcomes for patients on long- term benzos compared to controls. This was not adequately communicated to the public, to say the least. (The link to the study is in the blog). There have even been whistleblower scientists involved in the development on some benzos who said that drug CO.s have deliberately covered up harm. Read some about it here: https://publications.parliament.uk/pa/cm200405/cmselect/cmhealth/42/4112520.htm
NY & PA have also issued governmental health guidelines that BZs should not be prescribed for longer than a few weeks: https://www.benzoinfo.com/single-post/2016/09/10/Benzodiazepines-are-Contraindicated-in-Post-Traumatic-Stress-Disorder-PTSD?fb_comment_id=1441413735974539_1448974715218441
Regarding benzos for PTSD, in 2016 the DoD and VA concluded that it is basically adding gasoline to fire (in the long run.) The official policy now is not to prescribe benzodiazepines for PTSD for longer than several weeks. For more on BZs & PTSD, see my article: https://www.benzoinfo.com/single-post/2016/09/10/Benzodiazepines-are-Contraindicated-in-Post-Traumatic-Stress-Disorder-PTSD?fb_comment_id=1441413735974539_1448974715218441
Please do read the article and make note of the ‘insidiousness factor’ mentioned in it.
Thanks for responding,
Well said. Rare & great of your psychiatrist to both learn from you and validate you in the form of an apology on behalf of the field.
Not on their radar. The “ships not seen” metaphor has been aptly applied here by some I believe. It speaks to our numbers, that the running commonality we all virtually share is not being recognized by the profession. It’s so unrecognized not because it is so rare; it’s so unrecognized because there is so much ignorance, and since there is so much ignorance, the incidences are common.
Regarding the question/ subject of ignorance: I also want to add, since it is an important point I feel that got edited, The Chairwoman mentioned that opposing doctors didn’t stay to listen to victim testimony at the 1st hearing and it would be good of them to stay for this one. Neither Salzman nor Silberman took her advice to stay and listen to this hearing either.
*Still Not Too Late to Submit Testimony!*
Anyone (victims, loved ones of victims), from anywhere (planet Earth) can submit testimony who has been adversely effected by a benzodiazepine.
-Email to [email protected]. with the subject line “H.3594”
-Must! include full name and address, otherwise it is invalid
-Keep in mind for content: the symptoms you were originally prescribed for, what you were prescribed, how long you were on the drug or drugs and the impacts they had on your/your loved one’s life. (What happened to you, what symptoms etc.). How could this legislation have changed your situation?
Thank you Kirsten. Bravery across the board.
Thanks Steve. Head honcho, Dr. Jerry Rosenbuam, who testified at the first hearing co authored a 2005 paper with Dr. Samantha Stewart. In a 2004 paper, Stewart wrote “In an attempt to settle this debate, meta-analyses of peer-reviewed studies were conducted and found that cognitive dysfunction did in fact occur in patients treated long term with benzodiazepines, and although cognitive dysfunction improved after benzodiazepines were withdrawn, patients did not return to levels of functioning that matched benzodiazepine-free controls. Neuroimaging studies have found transient changes in the brain after benzodiazepine administration but no brain abnormalities in patients treated long term with benzodiazepines. Such findings suggest that patients should be advised of potential cognitive effects when treated long term with benzodiazepines, although they should also be informed that the impact of such effects may be insignificant in the daily functioning of most patients.”
Feel free to factor this into your assessment.
In my opinion we have been far too reliant on both a ‘peer’ and ‘education’ angle. Age- old Burstowian question: is it better to reform the system from within or demolish it from without? I’ll probably take some heat for this, but I have some deep issues with too heavy reliance on peer initiatives being some panacea either in reform or renew. (Save them for another piece and time). But one thing I will say in regards to the peer push is that I do think we need traditional “professionals” but we need them on our side. The system is never going to be ‘flat’; human nature is hierarchal– let’s get the ‘authority’ figures thinking correctly and as uncorrupted as possible. Peer efforts are a good ‘tool in the tool box’ (so sorry to use a mental health system cliche there, I’m tired), but stop stealing all the energy and attention.
Policy is a huge missing key. Less energy directed to peer and education angles and more to policy. And yes we live in a sad corporatocracy. The idea is that capitalism is suppose to correct itself right? With the best rising to the top? Well, guess what- that self correcting process is (if it is indeed even doing that) is obviously excruciatingly slow with inconceivable amounts of death and suffering as collateral damage.
We will see if policy can be changed by the little woman/man by this February in the case of ‘The MA. Benzo Bill’. Stay tuned for an upcoming article on it. People have said to me the way to go is education, also just a tool– policy is where it’s at. The psychiatrists testifying against us will never change their minds and they disseminate their “education” at Harvard and Tufts University. Whichever way The Bill goes, I believe it will make a systems statement.
By the way, testimony does not have to be long, complicated or taxing. Likely it should be submitted by some time in September, 2017. You can find more about it here: https://www.madinamerica.com/2017/05/bill-h3594-informed-benzodiazepine-use/
Thanks. I’m pretty much completely physically healed at this point. There’s no doubt the other drugs compounded my situation and were totally detrimental to my physical, mental and psychic well being. But out of them, I believe the benzo was the most grievous culprit. Polypharmacy has an unpredictable, synergistic effect. (That is not to suggest that single drugs can’t also be very detrimental on their own).
I use to believe there was something fundamentally deficient in me which prevented me from reaching a certain level of well being/contentedness also. Turns out it was all the drugs and being ‘a sane person in an insane world’ as they say (which doesn’t acknowledge trauma [or oppression])!
Good luck to you.
I apologize for the delay. Your comment got lost in the shuffle. I’m outraged too, as are many, many others. Personally, I have to approach these things in bite sized pieces at times. That said, we need to continue to organize as a community and I believe we will. I’m so angry and sad about your experience and am honored you decided to share it. Thank you. What an incredible feat. Glad to hear you’ve made it to the other side that many others have not.
I really hope you consider submitting testimony. Should you decide to and want any feedback my email is [email protected]
God bless you too,
“I should be quite psychiatry becuase is an “outside issue” ? F off , I will not.” Truer words never spoken, neither will I.
I was honored to have previewed this. Thank you for not violating one of the 1st rules of social justice- speaking for the oppressed without them.. “Nothing about us without us”..
I love how it follows the consciousness raising and self development in the learning process that it takes to become a “psychiatric survivor”. It’s quite the journey and this song captures that well; following our heroine from ‘labels and prescription pads to benzbuddies and MIA’. You have got to be pretty solid in yourself to say 1. all of these esteemed authority figures dressed up in white coats and degrees as well as SYSTEMS (like “Big Pharma and the FDA”) are all wrong and 2. I’m hallucinating and want to kill myself, and I’m the correct one here. “ “Now, some people think she’s crazy / And she doubts her sanity too”.. It’s unfortunate that trauma is what brings many of us to psychiatry’s doorstep. “A simple pill and a label / To soothe her fight or flight”.By the time we enter the system, we are use to having reality denied (note not ‘our reality’; but REALITY). I can also relate to getting no validation from the ‘authority figure’ of 12 Step groups you touch upon as well and I know many of my fellow benzo/psych victims can too in varying degrees.
Interesting how the standard mental health paradigm (purports) encouraging self- development, freedom, personhood and all the rest. It’s true that psychiatry lead me to all of these things, just not how they’d have it: rather through its’ rejection! On a good day, I view my immense suffering as psychiatric victim/survivor as an odd, great gift.
A line which particularly cut me to the core was “ It’s a blue so deep it’s almost black / And she doesn’t know if she’ll ever make it back”. From my testimony for the MA. ‘Benzo Bill’: “There were many days where every few minutes I would have to tell myself not to commit suicide, both from the uncomfortability of a CNS on fire but also from depressive haywire rumination”. And “also of great concern was my cognitive state, especially because I was unsure of where this was going. Put it this way: at four months off I was attending a psychiatric hospitalization day program and it occurred to me that I was unable to do ‘the math’ involved in trying to calculate crossing the busy intersection near its building”.
“But if they only knew / What it’s like to be benzo blue”. So many philosophical questions to keep picked apart from what is happening to people’s brains really from psychiatry’s tentacles. Questions about the mind-body connection, the soul, about compassion. What keeps me up at night most are the epistemological points about this distance between different people’s experiences which that line draws on. Well done. D. Oakes says we shouldn’t shock the shockers (I haven’t gotten there yet 🙂 ). From my testimony “..”what we go through is beyond the bounds of what is natural, and I find it hard to believe that anyone who has not experienced it would understand”. That of course leads to the question that If people knew, would they care? I’d like to think we’d at least round up some more supporters.
Where is the revolution?? Psych victims, (who are able), quite frankly need a fire lit under their butt. Your life has been ruined, or nearly ruined for corporate greed and you’re just going to take it? Mobilize! We’re no longer “going to be unknown to each other, just trying to survive”: we’re going to organize goddamnit. It’s amazing how victims of all sorts often cling dearly to dominating paradigms.
Where’s the backlash? I think projects like this will help fuel that fire, so thank you, thank you. Thank you for being one the few who has not experienced this themselves who not only ‘gets it’, but takes it one step further, cares enough to do something about it. People like yourself have a rough road. Solace should come from knowing you are on the right side of history. As I said, validating, resonating. Great work. We’re lucky to have you.
“Ayn Rand, Rand Paul and Paul Ryan walk into a bar. The bartender serves them tainted alcohol because there are no regulations. They die”.
Hi The Cat,
To expound on “What happens to all the people who get anxiety attacks and panic disorder when “Written prescriptions for less than a 10-day supply will not be refilled.” — They get a prescription for over 10 days. I myself am not totally clear on the rational behind that point let me say. I have to imagine it is in part aimed at curbing abuse. If people are tapering or taking the drugs as prescribed, then they do not have to worry about running out.
Also, the purpose of the commission is to explore safe tapering guidelines (in large response to people suffering from being taken off too quickly).
I hope you consider sending in your story!
You needn’t worry about a proposed law concerning better informed consent for benzodiazepines affecting your access to opiates or even benzos.
I wonder about your reaction, or really non reaction, to the section “Why is this Bill Important”. You speak about people suffering in connection to abuse or addiction. As the post mentions, there have been many,many thousands of people who have taken this class of drug as prescribed and suffered dearly. Here is a quick video compilation of people testifying to this. https://www.youtube.com/watch?v=SMzaxAo-sxI
Because it may not have happened to you personally, does not mean that it does not happen. See your own example of taking Paxil. People have a right to know the whole truth in order to make truly informed decisions. That is what this Bill aims at. You say that doctors do not try to be politicians. Those forces most certainly do exert influence on public policy. Moreover, those interests cannot beheld responsible for policing themselves; we need a system of checks and balances which represents the most important stakeholder here: the public.
I would also really encourage you to explore the points about originally targeted symptoms.
Thanks for commenting,
Thank you BetterLife. I have never heard of ADHD drug patches, they sound like a veritable nightmare.
Upon looking it up I found the ubiquitous “Methylphenidate’s precise *therapeutic action in ADHD is not known*”. You know what: what is happening is those grey areas is a mass disaster. Why are people so comfortable with imprecision involving the brain? I saw similar writing in my Klonopin leaflet. I believe it even said its mechanism of action “dissociates synapses”. Sounds really healthy, especially for PTSD.
Well put roller coaster analogy.
You bet. Thank you for caring.
It speaks to a group of people who have consistently put in so much effort and work for a long, long time to make opportunities like that possible.
Thank you Richard!
Grateful for your commitment & assistance in this battle. I am always in aw of those who have not personally experienced this themselves but who care and fight for it and us; for it is certainly the exception.
Thank you Kindredspirit. I’m sorry for both of your experiences.
I will look for that study.
I am horrified by The 21st Century “Cures” Act which was passed in December. Not only because it gives millions for forced outpatient psychiatric drugging (AOT) but because it lessons approval regulations even more. It was marketed and bought, as a streamline for scientific innovation. Sen. Elizabeth Warren (one of only 2 congresspeople who voted against it), called it legalized fraud for giant giveaways for drug companies. Her speech is really something: https://www.youtube.com/watch?v=A1s12VfvS2g
According to Dr. Jerry Avron, 89% of drugs are already approved upon 1st pass.