For a study, which was the first to combine a medical and communication science approach, was to evaluate patients’ experiences with (chronic Lyme disease) CLD and CLD-related care, identify themes and repertories in these patients’ narrations, and offer potential solutions for enhancing communication with them. Researchers held focus groups with self-identified CLD patients (N =15), guided by the notions of “clean language.” Participants were questioned about their encounters with CLD and medical care. Investigators used a bottom-up discourse analysis methodology to conduct thematic analyses. Additionally, they looked for common verbalizations (repertoires) among different themes. Participants characterized various CLD-related symptoms, many of which they described as “invisible” to outsiders. Their sickness substantially influenced every aspect of their lives, including their employment, social interactions, family relationships, leisure activities, and various ways of contributing to society. Nearly all patients, including those with transient CLD-related symptoms, reported having negative interactions with healthcare professionals. Verbalizations were noted for their frequent use of presuppositional language and other communicative strategies that implicitly establish common ground between participants and lend credibility to personal experiences (such as the impersonal “you”). The experiencing of significant symptoms, the rarity of receiving adequate relief from conventional medical professionals, and these symptoms are mainly undetectable to the outside world are the 3 main topics of CLD patients’ communication. Patients speak about these themes using a variety of vocabularies, including sentiments of loss regarding their prior health, a sense of abandonment or not being heard by the medical system, and the notion that they may have been in better shape had they been diagnosed earlier. By utilizing these repertoires, healthcare professionals can develop a shared perspective with their CLD patients and engage in more productive doctor-patient communication. Study group speculated that these results might apply to CLD and other illnesses with unknown causes, like Long COVID.

Source: bmcprimcare.biomedcentral.com/articles/10.1186/s12875-022-01736-5