This piece is going to explore using a method called Street Epistemology to examine the way people come to knowledge and to become more reflective about strongly held beliefs, specifically those beliefs about long-term benzodiazepine prescription.
I have begrudgingly been a member and activist in the benzodiazepine-injured community since early 2011. My “membership” to this underground “club” that nobody wants to join so enduring because my iatrogenic illness, the result of a long-term benzodiazepine prescription given without informed consent of its risks followed by a negligent doctor-induced cold-turkey withdrawal, annihilated my nervous system so severely that I still spend most of my time in bed all these years later.
Benzodiazepine-associated disability (BAD) can be so severe, so all-encompassing that you are forced to distract yourself from the minute-by-minute torment that is a shortage of the chief inhibitory neurotransmitter in the mammalian central nervous system (GABA). Just this year, I moved into a new condo and, while the walls brand new, there’s only so much staring at them one can do. So, I participate in benzodiazepine activism and awareness. Something about iatrogenic illness from benzodiazepines, at least for me, has lit a proverbial fire inside of me which demands that part of my life purpose be to expose this medically-induced injustice and also to, just in general and most likely as a by-product of living with chronic illness, go to bat for the “underdog” in other injustices. On top of the activism, I administrate my own small withdrawal support group and I study (as much as my cognitively-impaired brain will cooperate) and learn as much as I can about benzodiazepines, psychiatric drugs and a myriad of other topics.
One such topic I have recently taken interest in is Street Epistemology (SE) which is an approach based on the Socratic method. Epistemology is the investigation of what distinguishes justified belief from opinion.
So, what exactly is Street Epistemology? According to streetepistemology.com,
…it is a method and an approach for having meaningful, civil, non-confrontational, respectful, and productive conversations that are orientated toward aligning our beliefs with reality. The aim of Street Epistemology is to help people examine the processes they use to come to knowledge, become more reflective about their beliefs, and break through dogmatism.
Here’s a quick example of SE in action:
Everyone’s motivation for using SE might be different. In polling an SE group to which I belong, people report using it with the motivation to change another’s opinion, to increase doubt, to sow seeds, or to reveal inconsistencies. Others say they use it to increase humility, to potentially lower unnecessary suffering caused by certainty in deeply held beliefs, to improve the human condition or simply because it’s fun and challenging and feels like the best method to engage in respectful conversations about deeply held beliefs because there are greater good benefits to getting people to reflect on their methods for how they arrive at truth claims. For the purpose of transparency in this blog post, my motivation in using SE is to hopefully change some people’s thinking (I am under no delusion that it will make great impact in changing minds) and to attempt to challenge people to examine the beliefs they hold about prescribed benzodiazepines, how they arrive at those beliefs, if they’re really true and what the motivation for holding the beliefs might be. Please also note that I make no claims to be anything close to an expert epistemologist, having only recently learned about this approach, and am attempting to present it solely for the sake of trying my hand at it and informing in the event someone else will benefit from learning the method.
So, how is this newfound interest of mine in Street Epistemology relevant to benzodiazepines? Not too long ago, I wrote a blog post titled “Benzodiazepine Iatrogenesis and ‘The Great Erasures’” which details some of the downplaying, denial and/or outright dismissals offered by the medical community in response to patients claiming to be iatrogenically injured by long-term benzodiazepine prescription. In this blog post, the intended audience is the general public. More specifically, I’m addressing people taking prescribed benzodiazepines themselves or people who know someone else who takes them and who have responded or would respond (namely online, but sometimes in person) to someone—be it a friend, family member, acquaintance, or internet stranger—sharing their personal story of harm from prescribed benzodiazepines with any of the following (or similar) statements:
“I take [insert benzodiazepine name] and I have had no problems with it!”
“My doctor prescribed [insert benzodiazepine name] for me and said I need it! Don’t listen to people’s stories on the internet, ask your doctor!”
“I took [insert benzodiazepine name] for ‘x’ amount of years and stopped taking them without a problem!”
Typically this interaction ends with the person claiming to be injured by the benzodiazepine furiously posting links to medical journals or other relevant information from physician benzodiazepine experts, like Dr. Heather Ashton, Dr. Malcolm Lader and the like, to defend their position that they were harmed and to duly warn the person taking the benzodiazepine, to which, in response, the person negating their experience (because let’s be real, that’s what those comments were intended to do) and/or defending the long-term use of benzodiazepines most likely doesn’t read and digs in their heels in defense of their belief. Somehow the interaction ends, often times not well, with one or both parties going to their respective corners, sometimes angry, holding fast to their opposing positions. Now, sometimes SE discussions end without agreement too, as SE is not a “cure all” for opposing beliefs, but the goal is to challenge the other person or yourself to really think and thoroughly examine the process(es) they or you are using to come to or strongly hold a belief and deem it truth and then determine if it’s reliable.
If that scenario above resonates in any way as something you would say or as an interaction you’ve had or could see yourself having with someone telling you their story of being gravely injured by a benzodiazepine and you take benzodiazepines yourself, this blog post is for you. (As a side note, if you are a medical professional who prescribes benzodiazepines long-term claiming them safe, a medical professional who is against the long-term prescribing of benzodiazepines or someone who was harmed by benzodiazepine prescription yourself, I think everyone might learn and benefit from this, so please keep reading.)
So here we find ourselves, in opposing corners, me (or others) claiming to be injured by taking this class of medication long-term and you believing in some capacity that they’re “safe”, that you “need them”, that you are benefitting from them and/or want to continue to taking them. This crossroads is where Street Epistemology can be useful, whether you are using it on someone else or you are using it on yourself.
In my opinion, everyone should try it and also be willing to examine if their deeply held beliefs align with reality or if they’re holding onto beliefs because of cognitive dissonance, for the sake of comfort, simply because they think they’re “right,” because they are making a rationalization, or for any other reason and if they are doing any of this without having fully examined the belief. What rationally thinking person doesn’t want their beliefs aligned with reality?
Employing the SE method would be easier and more effective in a face-to-face or more interactive platform where both parties could respond back-and-forth to one another. However, for the sake of this blog post, I am limited to generating mock SE-type scenarios that would occur between the general public, who take but have not (yet) been harmed by benzodiazepines and who defend that they are helpful or safe to take daily as prescribed, and someone claiming to have been iatrogenically injured by long-term benzodiazepine prescription. Limiting as it may be, this medium will still serve its purpose. (However, if any of the benzodiazepine-injured YouTubers wanted to take this on and invite a disbeliever to an SE dialogue on their channel, it would certainly make for good watching. I’d actually love to see this dialogue between two medical professionals on opposite sides of the coin!)
Mock SE Scenarios
In response to those who outright reject the reports from people claiming to have experienced prescribed benzodiazepine injury or harm, I might ask the following:
Can you say with absolute honesty that you live the rest of your life like this? As an example, do you do research on Consumer Reports or other similar platforms before buying a new appliance or car? Do you read the reviews on ‘yelp’ or ‘Amazon’ before you purchase a product? Do you appreciate when other consumers give feedback on products after buying or trying them? If so, why then do you hold your benzodiazepine prescription to a different set of standards? More specifically, why do you reject benzodiazepine consumer outcomes and information if they’re “bad” or harmful, but when buying a new microwave, car or gadget this is information that you actively seek out to take heed of those negative reviews?
In response to those who respond to stories of prescribed benzodiazepine harms with a statement like “my uncle took benzodiazepines and stopped them without problems,” I would ask the following:
The statistics from benzodiazepine experts estimate that between 30 and 80% of people who take benzodiazepines for six months or longer will experience physical dependence and withdrawal symptoms. With that in mind, is there a chance that your uncle simply fell into the percentage that was predicted not to experience dependence and withdrawal and that the people who do report problems simply fell into the other percentage? Aside from the statistics, would you tell someone whose child ate, say, peanut butter and had to be hospitalized from a severe reaction to it that your child eats peanut butter every day and doesn’t have a problem, implying that their child couldn’t possibly have gotten sick from the peanut butter because your child didn’t? Do you think that it’s possible for a percentage of people who take a medication or who use a product to be harmed by it, and even sometimes badly harmed, while sparing a percentage of others?
In response to those who respond to stories of prescribed benzodiazepine harms with a statement like “my doctor prescribed these to me so they must be safe and I must need them,” I would ask the following:
Are you aware that every drug that was ever pulled off the market was once previously approved as “safe” for prescribed use in humans? The list is long. Thalidomide prescriptions ultimately resulted in birth defects to the limbs and sometimes death in the children of pregnant mothers taking the drug. The NSAIDS Bextra and Vioxx caused serious cardiovascular events (death, MI, stroke) before they were taken off the market. Fluoroquinolone antibiotics were prescribed for many years before a black box warning was added in 2008 (followed by numerous subsequent additions to the labels/prescribing guidelines) warning of a risk of tendinitis, tendon rupture, and irreversible peripheral neuropathy. All of these drugs, at one point, were approved by the FDA for use in humans and prescribed by medical providers to their patients. Would you agree that doctors prescribed those to people and the people who took them most likely trusted they were “safe” and/or “needed” at the time because they were a medical prescription? Also, medical error is the 3rd leading cause of death in the United States, so is a doctor’s prescription (or FDA approval) of a medication a guarantee that it’s truly “safe” or “needed”?
Could you be making a rationalization?
Another SE technique is to try to examine your belief(s) or to get others to to determine if you or they could be making a rationalization.
In the following video (4:20), YouTuber Julia Galef outlines a very SE-like scenario, where she would ask someone “If this reason were true, then what else has to be also true?” or, in shorter form, “If this is true, what else is true?”. It is a question similar to the SE question “where else in your life do you use this method?”. The video also emphasizes using these methods on yourself in a “thought experiment” to determine if you might be making a rationalization.
Applying this to the benzodiazepine topic we’ve been examining in this blog post, if benzodiazepines harm in the way that some people report, what else might be true for the person taking them? In other words, could the person taking them be making a rationalization that they “help and don’t harm” or that they “need the drug” because they aren’t willing to examine these strongly held beliefs because to do that would mean to face the fear or discomfort that would result from allowing themselves to consider that if they harm some percentage of people, they are then taking a medication that potentially poses a risk of grave harm to…themselves? In this example, I would also ask the person holding the ‘help and don’t harm’ or ‘need the drug’ belief if they are aware that benzodiazepines also are documented in the medical literature to cause a psychological dependence and ask them to consider how that might be affecting their strongly held belief. Food for thought…
The “could you be making a rationalization” SE angle would also work for medical prescribers of benzodiazepines. For example, one commonly reported response to patients presenting with a severe iatrogenic benzodiazepine withdrawal syndrome is “I prescribe these all the time and no one has ever had this problem,” which if we’re all being honest is really just another way of saying “this isn’t happening to you”. While that might truly be the prescriber’s experience, as far as they are aware anyhow, are they willing to consider that they might be making a rationalization? If they had, in fact, been exposed to it before, but missed it or misdiagnosed it, is there a chance that they’ve caused this problem in some of their patients by long-term prescription and they’re not willing to face that uncomfortable truth?
As a side note to the above, my own psychiatrist (the one managing my iatrogenic illness, not the one who prescribed and caused the benzodiazepine damage from long-term prescription in the first place), when presented with my severe and protracted withdrawal syndrome and after a willingness on her part to research the existing medical literature on benzodiazepines, was willing to admit that she had, in fact, been exposed to iatrogenic benzodiazepine illness before but mistook it for and misdiagnosed it as a recurrence of underlying “mental illness,” failing to appreciate it for what it was. So, some other SE-type questions to pose to a medical prescriber of benzodiazepines in this situation might be: How many of your patients have actually withdrawn completely from benzodiazepines (which is when the physical dependence usually initially manifests severely enough to know there’s a problem)? Is there a chance that you have never experienced this problem in your patients because they are still taking the benzodiazepines without attempting withdrawal? Is there a possibility that you mistook or misdiagnosed benzodiazepine withdrawal for something else because you haven’t even considered it as part of your differential diagnosis? Are there any other illnesses that you, to your knowledge, haven’t seen firsthand in your patients but that do exist? Is not having seen something firsthand evidence that it’s not a legitimate medical condition? Do medical providers sometimes mistakenly misdiagnose a condition because it mimics others, or because they aren’t aware of how the condition presents or that it exists at all? If there are many hundreds of medical journals about a condition, but you haven’t read them or are unaware of their content, does that make the condition they cover bogus?
To keep this blog post to a readable length, I will stop here with the few scenarios presented, despite that the scenarios could probably go on ad nauseam due to the sheer amount of denial, dismissal, and disbelief that the iatrogenically ill benzodiazepine community has reported facing. If you can think of others, on either side of the argument, please feel free to leave them in the comments.
Have you ever held a belief that, when presented with evidence or with further honest examination of said belief, you later changed your mind about? *Raises hand*. I vividly recall back in the early 2000s, my grandmother made the assertion that the hormones, steroids and antibiotics in commercial meat and dairy were suspected to be contributing to some health problems in humans. Guess who patronizingly mocked her at dinner that night, asking if she was going to eat the hormone-infused chicken? Guess who now goes out of their way to consume only pastured, organic, hormone, steroid and antibiotic-free meat? If you struggle to think of a belief that you once held as truth that you have recently examined or changed your mind about, or at least somewhat altered your position on, I’d ask you to examine why that is and what that says about how you hold beliefs.
As for benzodiazepines, I really don’t understand those who get so upset at those who criticize, or who have had bad experiences, injury and/or disability from, long-term benzodiazepine prescription. As it currently stands, no one is stopping you, or even attempting to stop you, from taking benzodiazepines long-term. In fact, it’s quite the opposite. All of the benzodiazepine-injured activists I’ve ever met actually go out of their way to advocate for the rights of people who are taking benzodiazepines long-term to continue taking them or to have the right to taper off of them at a rate and speed that they, the patient, determine and control. What motivates you to refuse to offer those of us who have been damaged by the drugs the same courtesy and respect? Rest assured, if you want to be drugged with benzodiazepines long-term and everything that comes with that—the damning notes in your records if tolerance withdrawal sets in, the disbelief and blank stares from medical providers who don’t know how to help you when it all goes wrong, etc.—there are plenty of medical prescribers who will oblige. Your needs are being met. But the needs of those want off of these drugs and for whom they are destructive, ruining their lives and health, are not being met. That is our motivation for speaking out with our experiences and for participating in activism and awareness campaigns around prescribed benzodiazepine harms. We feel it is wrong to continue to prescribe, without informed consent, a drug class that has time and time again been revealed to maim (sometimes to the point of people calling it “torture” and to where some lose their lives) a percentage of the population that takes it as directed. And it is even more wrong to flat out deny the damage, blame the compliant patients, or to leave the victims of this medical disaster without much-needed help and support.
Can’t both groups be represented without one, the most disadvantaged due to extreme illness, being shunned and marginalized? Can’t some people take benzodiazepines and feel they benefit or aren’t harmed and some people be gravely harmed? That is what the statistics compiled by experts reveal anyhow—although no one can predict as of yet who will be harmed and who will not, which is another motivation for our awareness and activism. Can’t you go on taking your benzodiazepine prescription without negating the very real experience of people who were gravely harmed by it?
Similarly, why do you (if you do) take issue with the patient activists who have been harmed who campaign for stricter warnings on the drugs and informed consent? Do you really live your life like this? Seriously, if you’re removing wallpaper in your home, do you want the label on your bottle of DIF to inform you that it’s carcinogenic so you can make an informed choice as to whether to use it or to opt for the steamer method, using water instead? Cigarette smoking doesn’t cause cancer, emphysema, heart disease and/or pregnancy complications in every single person that smokes, so should the Surgeon General’s warning come off the box? Do you think 100% of people who take a prescribed medication or who use a product have to be harmed for it to warrant putting a warning label on it? If not, what percentage of people harmed would you consider negligible enough to where the information could be withheld from the general public without it being unethical? (I am hoping you are taking a moment here and actually considering a circumstance where you might use a product that is known to cause harm to a minority, and you or your family member fall into that minority, and then asking yourself if you would seriously be OK with not having been warned ahead of time if the information was known. In other words, are you OK with hiding known harm so long as it only happens to a minority of people? Or are you just OK with that if it doesn’t happen to you or someone you love?). Do you really have an issue in all facets of life with informed consent and product warnings, or only when it’s surrounding a pharmaceutical drug that you are taking and that happens to cause physical and psychological dependence?
Would you, in all seriousness, look someone in the eyes who told you they were dying from lung cancer from a lifetime of smoking and say “well, my grandpa smoked and he didn’t get cancer,” implying that you don’t believe the cigarettes caused the cancer because it didn’t in your grandpa? If your answer to that question is “no,” I’d implore you to examine your propensity to respond to people who have been badly injured by prescribed benzodiazepines with “well, they work for me”. I don’t want to speak for anyone else, but the message that comes across for me with that response is, essentially, that because they work for you (or you think they do, up to this point), they can’t possibly harm someone else. It is a statement that feels as though it is meant to invalidate and dismiss an alternative experience. As to the motivation for doing so, I don’t want to speculate, but if I had to guess, it is cognitive dissonance as an attempt to avoid the mental distress that comes with being presented with the very real possibility that you are taking a medication that has harmed other people. All I ask is that you examine your motivations and if I am wrong about them, please correct me as to the real reason for your responding to someone’s chronic suffering and illness in that manner.
Even if you take issue, for whatever reason, with the fact that some of the campaigner efforts may result in stricter regulations like laws forbidding long-term prescriptions for new patients, there is always a “compelling reason” clause put in such laws for the people whose medical providers exempt them and deem they will benefit from long-term prescription, so those people will be served. This type of regulation will only serve to protect the mass amounts of people who are being negligently and over-prescribed these drugs without a compelling reason, placing them at a risk that outweighs potential benefit, without infringing upon the people whose prescribers will vouch for them having a condition severe enough to warrant a long-term prescription. If you’re already taking the drugs long-term, this doesn’t apply to you and benzodiazepine campaigners have historically been on your side demanding protections for you who are already dependent on long-term prescription.
All people with prescribed benzodiazepine-associated disability are asking for is a seat at the table. We are asking for people to listen to our stories with the motivation to actually hear, as opposed to listening to respond. And it would be the cherry on top if you’d stop and examine your beliefs before firing off a response attempting to silence or negate our stories of harm. As far as I am concerned, everyone should be thanking us (you’re welcome!). We are doing a public service and we’re doing it while seriously ill, solely with the motivation to help other people in an attempt to save them from a similar plight. We are the mortal version of Consumer Reports to which we’re offering a free subscription. We are the reviewers on ‘Amazon’ and ‘yelp’ that you search out and so appreciate in other facets of your life. We have tried the product and we are reporting our experiences in the face of hostility, stigma and disbelief, our transparency often a great social cost to us, in an attempt to prevent others from investing in what might turn out to be that “lemon” that might cost you years of indescribable suffering or your life. Why? Because we wish someone had done it for us before we knew any better. Because we feel we have this duty to society because prescribed benzodiazepine associated disability is that bad. Whether you heed our warnings or not is truly up to you. And, don’t worry, if it goes bad, as it has the very real potential to, we’ll leave the light on. We will welcome you with open arms into our support communities and help you when the medical community and everyone else turns their backs on you in spite of how badly you may have rejected us. Why? Because we once were you. Many of us once used all of the same rationalizations you do around taking prescribed benzodiazepines, thinking we “needed” the drugs too and that they were “helping” and “safe” because we trusted the doctors who prescribed them.
If no one is willing to give us a seat, we’ll just continue to set up our own table—we aren’t going away. And, unfortunately, without regulations and with governments, medical organizations and regulating bodies continually turning their backs on us, the seats are filling up fast. I truly hope you never have to sit at our table.