People with ME/CFS – and other “complex chronic disorders” such as long COVID, dysautonomia – disturbance or dysfunction of the autonomic nervous system that is responsible for regulating processes in the body that occur without our conscious control, and those involving chronic pain, and chronic fatigue, often have difficulty getting “effective and compassionate medical care” – rather they are dismissed, judged, gaslight, and disbelieved by health professionals.
The authors of a paper – published in the journal of Economic Research and Public Health, state that clinical care and communication for these “complex chronic disorders” has been a “challenging task” due to a lack of training for medical professionals, controversy, inclination or prejudice (bias) for or against one person or group, especially in a way considered to be unfair – often influenced by societal stereotypes and prejudices, and ableism.
In the article, it is discussed that both ME/CFS and long COVID have been “extensively psychologised, with patients encountering substandard medical care, disbelief and stigma”.
The authors write that often medical professionals and people with “complex chronic disorders” – including those with as ME/CFS, are “squarely at odds with each other”:
“Healthcare professionals assert one version of reality (“you don’t look sick”; “your tests are normal”), and patients are frustrated by their experience (profound exhaustion and inability to engage in physical and cognitive tasks) being disbelieved and denied appropriate medical care, categorising these interactions as “gaslighting”.”
These “problematic conversations” between clinicians and people with “complex chronic disorders” can involve the use of specific words or phrases – known as “never words”, such as “you don’t look sick” or “you need to stop thinking about your symptoms so much”.
Never words can leave the “patient” upset, demoralised, fearful, confused, and angry – they can also create distrust, and undermine therapeutic relationships and disease management.
With the aim to “prevent these destructive clinical interactions”, the authors reviewed key literature on difficult clinical conversations, and have provided recommendations for alternative, preferred phrasing to the never words which they hope can improve chronic illness care through “compassionate, encouraging, and non-judgemental language”.
Examples of the never-words, and suggested alternatives:
Importantly, as the researchers carrying out this study are health care professionals who acknowledged that their roles may lead to bias, they worked with a “patient advocate” in the process of developing these phrases.
