Inside the Long Goodbye: What Patients Say About Tapering Off Benzodiazepines

For millions of people, benzodiazepines begin as a lifeline—a prescription for crushing anxiety or relentless insomnia that promises calm and sleep. But for roughly two percent of those who take them, the lifeline becomes a trap, evolving into a full-blown addiction that can dominate decades of a person’s life. Now, a rare qualitative study published in BMC Psychiatry has given voice to the patients themselves, documenting in their own words what it actually feels like to be weaned off these powerful sedatives in formal addiction care. The findings paint a picture that is far messier, more emotional, and more human than the tidy clinical language of ‘gradual dose reduction’ suggests.

The research, led by Sofia Burmester of Karolinska Institutet and the Stockholm Centre for Dependency Disorders, involved semi-structured interviews with nineteen adults diagnosed with sedative, hypnotic, or anxiolytic use disorder under the DSM-5, all of whom were undergoing or had completed tapering treatment at a publicly funded outpatient addiction clinic in Sweden. The participants—ten men and nine women with a mean age of 53.4 years—had used benzodiazepines for anywhere from two to forty-five years before entering treatment, with an average of 16.6 years of use. More than half had used two or more benzodiazepines or z-drugs simultaneously, with alprazolam being the most common starting medication, frequently combined with zopiclone or zolpidem. Over a third reported obtaining benzodiazepines outside the healthcare sector at some point in their lives, underscoring the depth of dependence in this population.

The treatment they described follows a carefully structured protocol. Patients at the clinic are assigned both a primary nurse and a psychiatrist, undergo a full clinical evaluation including laboratory and drug toxicology testing, and then begin an individualized tapering plan built on shared decision-making. While standard guidance suggests reducing the dose by roughly ten percent every one to two weeks, the actual pace is negotiated between patient and psychiatrist and reviewed regularly. Patients attend weekly or more frequent in-person visits, where a regulated number of tablets are dispensed until the next appointment. Tapering can be paused entirely to allow stabilization if withdrawal symptoms, psychiatric symptoms, or substance use worsen. Doses may be switched to long-acting formulations and distributed evenly across the day to blunt withdrawal. In practice, a patient starting at 100 milligrams of oxazepam daily might follow a sixteen-week schedule, reducing by 10 milligrams per week initially and then slowing to about 5 milligrams per week.

Using reflexive thematic analysis, the researchers identified three overarching themes in how patients experienced this process. The first, ‘Navigating motivation and involvement,’ reveals that motivation is not a fixed prerequisite for treatment but a fluctuating, fragile state that rises and falls with symptoms, circumstances, and clinical relationships. Many participants entered treatment ambivalent, torn between hope for a life without benzodiazepines and dread of the withdrawal ahead. ‘Your motivation, that’s the most important thing, but it’s not so easy,’ one participant said. Others described steely determination from the outset, while some confessed that the fear of feeling unwell made each dose reduction feel like an ordeal requiring them to ‘grit your teeth and steel yourself.’ Crucially, participants reported that empathetic, respectful interactions with healthcare personnel could transform ambivalence into engagement—one credited the staff with helping them ‘see some kind of a life where I don’t need to use benzos.’

Withdrawal symptoms emerged as a powerful force shaping motivation, and their severity varied dramatically. Some participants were pleasantly surprised by how manageable the process felt, with one reporting it was ‘surprisingly little’ and even asking clinicians to speed the taper up. Others described profound suffering: sleeplessness and anxiety so severe that one participant ‘thought I was starting to lose my mind.’ The study found that when patients experienced intense symptoms, their motivation to continue could collapse—unless the treatment structure responded flexibly. Participants praised schedules that allowed them to pause at a difficult dose for a few extra days or to slow the pace when life became overwhelming. Conversely, when they perceived the schedule as rigid and impersonal, the experience could feel coercive. One participant described feeling ‘almost like I’ve been held hostage,’ and others expressed frustration at being left uninformed about treatment goals and expectations, a combination that amplified helplessness and strained communication with staff.

The second theme, ‘Replacing benzodiazepines with new coping strategies,’ captures perhaps the most psychologically profound challenge of tapering: surrendering the one tool that has managed mental illness, often for decades, without knowing what will take its place. Participants described the medication as a crutch that ‘serves a certain function,’ and letting go of it meant relinquishing control over their only coping mechanism. For those whose underlying anxiety or insomnia persisted or worsened during treatment, the final small doses felt almost impossible to release. In moments of distress, some resorted to taking more than prescribed or turned to alcohol, and even after discontinuation, many had to actively resist the urge to resume. ‘There have been a few nights where I’ve thought about it: Maybe I should just take one pill anyways?’ one participant admitted. Relapse was not an abstract risk but a live, immediate fear—one participant said that if the anxiety returned at full force, ‘it feels like there’s really nothing that can stop it from happening.’

Participants largely expected the healthcare system to help them build replacements for the medication, and psychological treatment emerged as the most valued option for addressing the root causes of benzodiazepine use. Those who connected with a psychologist described treatment as being ‘about more than just tapering out,’ a reframing that helped sustain clinic attendance. Yet the study documents a troubling gap between the offer of psychological care and patients’ ability to actually use it. Some declined therapy due to anxiety, time constraints, or past negative experiences. Others encountered delays or poor timing that rendered it ineffective—one participant saw a psychologist while still on a high dose, describing themselves as ‘totally dazed in the head’ and unable to benefit. Fear of relapse also pushed some patients toward other supports, including Narcotics Anonymous or non-addictive medications. Without an effective replacement strategy, participants described lives that remained restricted and symptom-filled, with one saying the future made them feel ‘panicked’ and, after so many years of feeling unwell, ‘meaningless in a way.’

The third theme, ‘Balancing support throughout treatment,’ reveals how finely tuned the therapeutic relationship must be. Participants valued clinicians not only for their expertise—which made them ‘feel safe in some way’—but for their availability and genuine attention. Close relationships with nurses, in particular, allowed patients to laugh, speak openly about missteps such as taking extra doses, and disclose dissatisfaction without fear of losing care. Conversations that normalized their experiences alleviated anxiety; one participant summed it up simply: ‘I’m not crazy.’ But support could also miss the mark in both directions. Brief visits and difficulty reaching staff between appointments left some feeling alone during the worst withdrawal periods, while unfulfilled promises bred helplessness—’we’re helping you and we’re helping you,’ one participant recalled staff saying, ‘but when you leave you’re like: how are they going to help me?’ Others experienced support as intrusive, with unilateral decisions and pressure to engage in unwanted activities adding stress rather than relief.

The study also uncovered a delicate dynamic around dependence on the healthcare system itself. Some participants came to feel like a burden—’it feels like I’m a burden,’ one said—and responded by hiding their struggles or even requesting fewer clinic visits, which paradoxically reduced the support they received. Many appreciated long-term follow-up and the reassurance of being ‘a phone call away,’ while others felt support declined too quickly during recovery. Family members played a complementary and sometimes decisive role, driving patients to appointments, helping manage medications, limiting access to illicit benzodiazepines, and offering encouragement that kept people engaged. One participant was unequivocal: ‘I would never have made it if my family hadn’t helped me… never.’

The authors acknowledge limitations: all participants were recruited from a single specialized outpatient clinic, and because everyone interviewed was undergoing or had completed tapering, the experiences of those who dropped out remain unheard. Still, the study is among the first to examine tapering through the eyes of patients with a formal addiction diagnosis, and the first to do so in a Nordic context. Its central message is striking: successful discontinuation is not simply a pharmacological exercise in lowering doses, but an iterative, emotionally demanding process in which motivation, coping strategies, and support are woven together through everyday clinical interactions. Since patient characteristics like dose, duration of use, and psychiatric history are fixed at treatment entry, the researchers argue, the delivery of care is the variable that clinicians can actually change. Listening to patients—about pacing, about fear, about what support feels like from the inside—may be the difference between a taper that holds and one that fails.

Subject of Research: Patient experiences of benzodiazepine tapering treatment in addiction care

Article Title: Patient experiences of benzodiazepine tapering: a qualitative study of treatment in addiction care

Article References: Burmester, S., Krüger, C., Franck, J., & Westman, J. (2026). Patient experiences of benzodiazepine tapering: a qualitative study of treatment in addiction care. BMC Psychiatry, 26(1), Article 765. https://doi.org/10.1186/s12888-026-08745-z

Image Credits: AI Generated

DOI: 10.1186/s12888-026-08745-z

Keywords: benzodiazepines, addiction, tapering, withdrawal symptoms, qualitative research, patient experiences, substance use disorder, mental health, psychological treatment, therapeutic relationship, healthcare personnel, Karolinska Institutet