A systematic review – a type of study that use repeatable methods to search for, select, and combine all available evidence to answer a specific research question – has been published on the harmful consequences of ‘symptom invalidation’ for people with complex chronic illnesses – including ME/CFS.
In a healthcare setting, symptom invalidation – also known as ‘medical gaslighting’ – occurs where a medical professional directly or indirectly communicates that the person who has the illness is wrong in their beliefs about their symptoms or related experiences.
Symptom invalidation often means that health professionals are shutting their patients down, preventing them from forging a therapeutic alliance – the professional relationship between clinician and patient – and from accurately reporting their symptoms; especially those which are stigmatized, or relate to mental health concerns.
The systematic review included 151 articles, 26 of which included people with ME/CFS – this equated to 11,307 participants in total, 2,369 of whom had ME/CFS.
Results suggested that symptom invalidation had several key consequences:
“Induced emotional states and beliefs” – This included self-doubt, negative self-esteem, feeling disconnected from clinicians (insecure attachment), negative expectations about the future, negative emotions such as shame and guilt, and depression.
“Induced health care emotional states and beliefs” – Loss of trust in clinicians, violated health care expectations – participants reported ‘feeling let’ down or ‘disappointed’, frustration or anger, health care burn out, and health care related anxiety or trauma.
“Induced health care behaviour” – Under-reporting of symptoms or avoidance of healthcare all together.
“Health service outcomes: diagnostic delay” – This was thought to be due to clinicians not investigating symptoms, or though missed, or misdiagnosis.
It was hypothesised by the researchers that both “Induced emotional states and beliefs” and “Induced health care emotional states and beliefs” lead to the under-reporting of symptoms or avoidance of healthcare all together. This then leads to diagnostic delay as clinicians do not investigate symptoms, misdiagnose, or miss diagnosis all together.
The findings from this study suggest that there may be a range of negative consequences of symptom invalidation for people with complex chronic illnesses. While, regrettably, many people with ME/CFS will be familiar with symptom invalidation – and the consequences it has, including delays in diagnosis – the authors of this paper considered several different illnesses together meaning the results may not all be applicable to people with ME/CFS. More research would be needed to validate the findings of this study in each of the individual disease groups – including ME/CFS.
ME Research UK notes that it would also be essential to investigate whether people in underserved groups – such as ethnic minority groups, or men with ME/CFS – experience the same consequences of symptom invalidation.
