Participants included ten men and nine women, aged 25 to 75 years (mean 53.4, SD 14.6) (Table 1). 37% of the participants used only benzodiazepines, 21% only benzodiazepine-like hypnotics, and 42% a combination of both. Decade of initiation varied, with nearly half (42%) of the participants first using benzodiazepines prior to 2000. Most (74%) started to use benzodiazepines after receiving a prescription, while five (26%) first encountered them in other ways; however, all participants were prescribed benzodiazepines at some point during their use. Long-term use of both prescription and illicit benzodiazepines was common prior to receiving a diagnosis and entering addiction treatment. The mean duration of regular benzodiazepine use was 16.6 years (SD 13.7), with the shortest reported duration being 2 years.
In the interviews, participants reported that they started using benzodiazepines to treat symptoms of an anxiety disorder (58%), sleeping problems (16%), or a combination thereof (21%). Fifteen participants (79%) described experiences of psychosocial stress, trauma, or crises during their lifetime. Four (21%) said these experiences preceded prescription, five (26%) that they occurred after starting benzodiazepines, and six (32%) that they had happened both before and after starting benzodiazepines.
The reflexive thematic analysis resulted in two themes, (1) benzodiazepines were not always seen as problematic, but neither were the risks discussed and (2) entangled in continued benzodiazepine use and increasing restrictions on prescribing, as well as subthemes that describe participants’ perspectives from initiation to deprescription (Table 2).
Theme 1: Benzodiazepines were not always seen as problematic, but neither were the risks discussed
Participants described initial interactions with prescribers that were centered on pharmacologically resolving anxiety and sleeping problems, but included little discussion of underlying mental health status. When they first started using benzodiazepines, participants focused on the positive effects they experienced, such as increased function and a sense of normalcy. However, upon reflection, they felt insufficiently informed about potential risks at the start of use and indicated that more proactive communication would have been helpful. Retrospectively, participants viewed this as a breakdown in communication at the time of their first prescription. At the same time, they reflected that benzodiazepines were not always perceived as problematic when they first began using them—particularly among those who initiated use several decades ago. In those early stages, participants often regarded benzodiazepines as just another medication and did not fully grasp the risks associated with these narcotic drugs.
Using benzodiazepines as a quick fix without discussing underlying mental health problems
During the interviews, participants often mentioned a personal or family history of mental illness as a contributing factor to their initiation of benzodiazepine use.
It probably started with my being, a so-called “anxious child”, with anxiety that I couldn’t handle. I met, well, a psychologist before I started school. Had panic, death anxiety, and panic my whole childhood. (P11)
However, when reflecting on their initial encounters with prescribers, participants reported that discussions primarily focused on pharmacological symptom relief, and did not typically include assessment of potential underlying causes of their mental health difficulties. Participants said that they either refrained from disclosing or were not prompted to discuss histories of psychosocial stress, trauma, or crises at the time of their initial benzodiazepine prescription. Some participants were unaware of underlying psychiatric diagnoses when they first received the medication:
Well, what I didn’t know was that I had PTSD [post-traumatic stress disorder], and I couldn’t sleep, I felt poorly which is why I got the sleeping pills, but it wasn’t that they told me, “you have PTSD.” (P16).
Participants’ initial focus was often on the positive effects of benzodiazepines, including getting through a crisis, resolving symptoms, or regaining functionality in their daily lives. Those who started taking benzodiazepines without a prescription also explained their use as related to symptoms of undertreated mental illness, and later received prescriptions that allowed them to continue treating their symptoms: “It was for self-medicating purposes, then, that I acquired them [online], above all, perhaps, for a little social anxiety” (P13).
Participants said that they could not live a normal life or do “very basic things” (P9) without what they referred to as the good effect benzodiazepines had on anxiety, panic attacks, worry, and insomnia. Some participants even said that the symptoms they had experienced changed them, whereas with benzodiazepines, “I have, simply, been as I should be” (P3). They described taking a pill in the morning to “feel normal” (P7), “to be able to be out, like a normal person” (P14), and as necessary to facilitate the activities of daily life, including grocery shopping, commuting to school or work, or meeting new people.
It was very positive in the beginning, everyone thought so, because I was, like really, home for almost half a year, didn’t go past the [front] door. So everyone thought it was great that it worked. I mean, my family said so too. (P12)
Taking benzodiazepines like any other medicine, not understanding the risks
The combination of the positive effects they experienced and how easy it was to obtain a prescription—“[primary] health centers are quick to prescribe” (P6)—contributed to participants’ perception that the risks of using benzodiazepines were negligible. Participants said they were unaware of “how serious a drug this actually was” (P1). They felt that prescribers could have done more in early interactions to communicate the potential downsides of using these narcotic drugs. Several participants did not know about the addictive potential of benzodiazepines.
I mean, I was prescribed them and there was never anyone who said they were like, narcotic drugs or something, that it was a narcotic I was taking. (P5)
There were also misunderstandings about the expected duration of use. Some participants thought that treatment with benzodiazepines was intended to be lifelong, and that it was natural for their dose to increase over time. They were not aware of the risks of tolerance associated with this class of narcotics.
I saw them just the same as […] I mean I have other medications, heart medicines and for blood pressure and such, so it wasn’t any different than that, it was one [pill] every day. (P2)
Upon reflection, participants wished for clearer, more proactive communication about the treatment plan and said that they had been unaware of the risks. They also shared their frustration about having been being prescribed narcotics as a first-line or common treatment.
I just think it is so freaking sick that doctors prescribe those kinds of medicines to people who are that young and also that– and such high doses too… like without control by the state or something. (P12)
After their own experiences with benzodiazepines, many participants supported restricting prescriptions, reasoning that the risk of addiction was too great to justify general use: “Not even in the case of a catastrophe, I think […] I can’t see that there is any reason at all to prescribe this to anyone, actually” (P1).
Theme 2: Entangled in continued benzodiazepine use and increasing restrictions on prescribing
Participants reported an average of nearly 17 years of regular benzodiazepine use (i.e., at least 3 days a week), often without consistent follow-up visits to health care settings where emerging signs of addiction might have noted. Many started with as-needed (pro re nata or PRN) prescriptions and initially thought they “did something good” (P11) by taking the drugs. However, signs of addiction developed over time as participants began relying on benzodiazepines in new ways and increasingly self-medicated. Participants described how maintaining prescriptions initially required minimal effort and continued uncontested for years, with little follow-up regarding changing use. However, the introduction of stricter guidelines increased tension in patient-provider interactions surrounding prescribing, particularly for people with long-term and high-dose use. Facing deprescription without sufficient support made some participants feel abandoned by the health care system.
New ways of conceptualizing and relying on benzodiazepines developed over time
As time passed, participants began using benzodiazepines more regularly and preventatively to treat their symptoms and manage various crises. They defined as-needed use themselves and began relying on benzodiazepines in a manner their prescriber may not have intended, using them for non-therapeutic reasons despite growing negative effects. Their conceptualization of the role of benzodiazepines in their lives also evolved. For instance, in recounting their path to addiction, several participants described viewing benzodiazepines as a lifeline:
It has been a lifeline to have the strength to go on, I mean, so I don’t have to put up with this anxiety and worry and that kind of thing. So it, well, that’s how it started. (P2)
Participants took additional doses to cope with challenges in daily life, self-medicated to neutralize strong feelings like melancholy, and used benzodiazepines to take a break from reality or stress:
… to just escape from here and, so to say, go someplace else and calm down, in order to then go back and deal with the things you have to deal with. (P5)
One participant described benzodiazepines as a “final protective embankment” (P4) which kept them from being overwhelmed by anxiety and provided a reliable means to ensure they could get enough sleep. Another participant used benzodiazepines to disassociate while staying in an abusive relationship, indicative of persistent use in a situation that could be mentally and physically dangerous:
I really felt, now you [partner] can’t get to me anymore, because I can… you can’t make me sad, you can’t make me scared or anything, I… it was like […] it became my safety, I felt like, now I can turn off. (P10)
The new ways in which participants related to benzodiazepines over time were also apparent in the ways they ascribed the drugs with unexpected properties, such as improving their work by helping them “stress less and get more done” (P8) or making them “alert and clear-headed” (P18). As participants’ habits of self-medication increased, they started taking benzodiazepines to treat conditions including poor self-confidence, muscle tension, pain, low energy, fear, hunger, and headaches: “It became a universal pill” (P10). Participants’ changing conceptualizations of benzodiazepines and ways of relying on them were potential signs of developing addiction. However, according to participants, providers seldom asked about changing use patterns that could have warned of future problems, and participants themselves did not bring up changing self-medication practices with their prescribers.
Long-term use was facilitated by easy access to prescriptions
According to participants, the ease with which they could renew prescriptions facilitated their increased and prolonged benzodiazepine use. Participants who first used benzodiazepines in the 1980–1990s described meeting with what they referred to as an old guard of doctors who would ask them if their medication was working, and if they answered yes, would continue prescribing. As one participant said, “it has just rolled on, so… and then I have asked to get new, renewed prescriptions and I have just, like, gotten them” (P5).
Participants said follow-up visits were infrequent and that prescribers they had seen for many years neither asked probing questions about how they used benzodiazepines nor initiated conversations about risks of long-term use.
I just got my prescription every month, so I never had one of those talks, that, “we should maybe stop with these now and start something that isn’t addictive, sedative or, like, is less strong, or… ” No, I just got them, without contact. Every month. (P12)
Additionally, participants typically only contacted their prescriber when they needed a refill, a process that was often straightforward in their early years of use. Some participants described how previous providers had been “so very happy to prescribe medicine” (P15) or would agree to large renewals over the phone.
I could text them whenever, around the clock, and just say, “I’m out,” and they would prescribe 200 at a time, and sometimes they didn’t keep track, so sometimes I had 600 [benzodiazepines] at home. (P10)
Participants also gave examples of times when they felt prescribers minimized the risk of long-term use of a low dose or implied that the prescription was justified because of the serious nature of their situation. For example, one participant with previous benzodiazepine use who visited a new health care provider during a crisis recounted receiving a prescription with such a justification.
“In my 25 years, I have never prescribed such pills, but I am going to make an exception, and that exception is you.” (P12).
Participants felt that by agreeing to prescribe benzodiazepines or renew a prescription, prescribers validated their continued use. Over time, participants became more aware of the recurring problems in their lives that may have been caused or exacerbated by their long-term use of benzodiazepines. Despite growing awareness of the associated risks, many participants, including those who had tried alternative medications or psychological treatments, continued to view benzodiazepines as the only effective solution and chose to persist with their use.
It is a little bit of a rock and a hard place, like what is, yeah, what do you choose? You choose, well, to be able to live. (P9)
Deprescription with insufficient support caused tension
Participants reflected that obtaining a prescription became increasingly difficult over time and that interactions could become quite tense as providers’ attitudes surrounding prescription began to change: “there are a lot of doctors now who are very restrictive” (P4). Participants described increased external oversight of their prescribers, which they perceived as contributing to a more stigmatizing health care environment. At times, they felt judged by health care professionals for their benzodiazepine use or reported being labelled addicts when collecting their medications. Strategies to mitigate benzodiazepine risks—implemented by what participants referred to as younger doctors—often led to contention. Health care providers demanded to see drug lists before prescribing, refused to prescribe a participant’s preferred benzodiazepine, or issued progressively smaller prescriptions to encourage tapering.
I reached out to some doctor, but they were also a bit like that: “No…,” that they didn’t want to prescribe too much. It kind of started to be a bit more like that, that they became a little more… I mean, when I got the first [prescription], it seemed like they could prescribe however they wanted. (P7)
While increased exposure to more restrictive attitudes on benzodiazepine prescribing heightened participants’ awareness of risks, they often remained resistant to discontinuation. They feared losing access, especially when they still felt they needed benzodiazepines or did not see themselves as addicted. To avoid the risk of being denied a prescription by a new provider, participants often stayed with the same prescriber as long as possible. Yet, disagreements could occur even with long-term prescribers, particularly if they aimed to reduce or discontinue a prescription:
People who are addicted to these [benzodiazepines] can be very convincing to their doctors and very pushy too, and maybe it is hard then for the doctor to say no. (P1)
Participants’ responses to these changes in prescribing varied. They ranged from eventual acceptance that the type of prescribing they once knew might no longer be possible, to finding other ways to supplement their intake, to anger—especially when forced to discontinue against their will. Participants were especially upset when they felt their health care provider did not listen to them or understand the extent of their problems. Four months into addiction treatment, one participant still found it difficult to understand why they were denied a refill, and why emergency care would not give them a prescription when they felt they needed it:
I can get angry. Because if they walked in my shoes and had the anxiety that I have, well, then they would have prescribed them. (P4)
Participants expressed indignation at being abruptly forced to stop benzodiazepine use by providers who had long facilitated their treatment, and often described feeling abandoned by the health care system—particularly when faced with sudden deprescription or an inability to find a new prescriber.
It was when I was forced to stop, I mean, we had like an acute crisis there, and then they took it [the prescription] away with the justification that I had become addicted. (P17)
They recounted disappointment and frustration with the lack of support they felt from health care providers, as well as exhaustion from being shuffled between providers they described as inexperienced or unable to provide sufficient help, even when such help had been promised: “I was supposed to go to some relaxation… whatever it was… clinic, but I never got a time or anything [to go]” (P7). They also blamed health care providers for poor management of deprescription and suggested that more could have been done to support tapering or facilitate referral to addiction treatment.
… I think that they [primary health center prescribers] should know more about how to help patients taper out. But, I mean, it takes a lot of time, I guess, and maybe they don’t have time for that, but they could have referred me here [to the addiction clinic] then instead of searching by myself for several months. (P6)