“I'm pretty sure it's either food poisoning or Covid-19”: Lived experience versus medical knowledge in diagnosing substance use problems

Abstract

People who use drugs, or who have in the past, often report that doctors and/or treatment providers devalue, or are unwilling to believe their claims in regards to substance use issues, in particular the presence and severity of withdrawal. In the case of benzodiazepine withdrawal this can not only lead to significant discomfort, frustration, and trauma for patients, but can lead to serious medical problems. This commentary uses the authors’ recent first-person experience with a disbelieving doctor in order to illustrate the lack of value often given to the claims and narratives of people with lived substance use experience. I outline some of the potential problems with this approach, including the effects on patients themselves and the loss of an important source of evidence-based knowledge. It also discusses potential risks associated with the recent increase in benzodiazepine prescription due to Covid-19 and offers suggestions for improving treatment outcomes.

Embedding lived experience into mental health academic research organizations: Critical reflections

“…High rates of depression, anxiety, distress and suicide among populations like physicians and graduate students demonstrate that lived experience is among us, whether outwardly acknowledged or not 9,10 . Through personal disclosure publications, an increasing number of academic researchers have been acknowledging their lived experience and sharing their journeys 6,7,11–15 …”

“…9,10 Through personal disclosure publications, an increasing number of academic researchers have been acknowledging their lived experience and sharing their journeys. 6,7,[11][12][13][14][15] When lived experience is fully recognized within mental health research spheres, an opportunity is afforded to pair POR approaches with the recognition of lived expertise at all levels of research, including research leadership, to generate research guided by lived experience. Indeed, there have been calls for the explicit engagement of lived experience among academic researchers and examples of success, 6,7,13,[16][17][18] including in dedicated lived experience roles and in traditional research roles to which researchers may bring their lived experience.…”

“… 9 , 10 Through personal disclosure publications, an increasing number of academic researchers have been acknowledging their lived experience and sharing their journeys. 6 , 7 , 11 , 12 , 13 , 14 , 15 …”

“He’s used drugs - he’s biased! He’s not a drug user - what would he know!”: A cross-sectional, online study of drug researchers’ experiential knowledge of drug use and disclosure

“…In a special issue of the International Journal of Drug Policy, Harris and Luongo (2021) write of the challenges in bringing self-reflexive disclosure to academic research — from the precarity of job security to deference to respectability politics. A wide range of issues was explored in that issue including the politics of auto-ethnography in drug research ( Wakeman, 2021 ), conflict of one’s lived experience with medical discourse ( Frank, 2021 ), complications of sharing experiences with participants ( Zampini et al, 2021 ), challenges of embodying self-regulating drug use in a culture saturated with extreme images of drug use ( Walker, 2017 ), and the place of researchers’ voices who are not part of the academy ( Simon et al, 2021 ).…”