Harm caused by incorrect ‘psychosomatic’ diagnoses

Research published this week outlines and investigates the harm caused to patients by vague ‘psychosomatic’ diagnoses and failure to investigate serious symptoms. The research was funded by LUPUS UK and The Lupus Trust although the study included people with other (or multiple) auto-immune conditions.

Many of the findings will be familiar to people with hard-to-diagnose or contested conditions such as M.E., Long Covid and many more.

‘I still can’t forget those words’

The study gives voice to patients’ innermost feelings about their misdiagnoses and interactions with health care providers. It uncovers the devastating impact these experiences had on their confidence and self worth:

Patients who reported that their autoimmune disease was misdiagnosed as psychosomatic or a mental health condition were more likely to experience higher levels of depression and anxiety, and lower mental wellbeing. For example, one patient with multiple autoimmune diseases said: “One doctor told me I was making myself feel pain and I still can’t forget those words. Telling me I’m doing it to myself has made me very anxious and depressed.”

More than 80% said it had damaged their self-worth and 72% of patients reported that the misdiagnosis still upset them, often even decades later. Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. As one patient reported, it “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words”.

from the Cambridge University press release

The research team led by Dr Melanie Sloane of the University of Cambridge (UK) included patient experts as well as traditional academics. The study involved 3000 participants – both clinicians and patients – who answered questionnaires. A selection (67 patients and 50 clinicians) then took part in in-depth interviews, aiding further understanding of ‘both sides’ of the diagnosis process.

‘Reassurance’ that was anything but…

Some doctors believed they were being reassuring by telling patients there was no physical explanation for their symptoms. However, for patients with serious and worrying symptoms that were seemingly being ignored, this was far from comforting and caused a lasting loss of trust.

Dr Melanie Sloan, from the Department of Public Health and Primary Care at the University of Cambridge, said: “Although many doctors were intending to be reassuring in suggesting a psychosomatic or psychiatric cause for initially unexplainable symptoms, these types of misdiagnoses can create a multitude of negative feelings and impacts on lives, self-worth and care. These appear to rarely be resolved even after the correct diagnoses. We must do better at helping these patients heal, and in educating clinicians to consider autoimmunity at an earlier stage.”      

Clinicians highlighted how hard it was to diagnose autoimmune rheumatic diseases and that there was a high risk of misdiagnosis. Some doctors said they hadn’t really thought about the long-term problems for patients, but others talked about the problems in regaining trust, as one GP from England highlighted: “They lose trust in anything that anyone says…you are trying to convince them that something is OK, and they will say yes but a doctor before said that and was wrong.”

from the Cambridge University press release

Implications for therapists and clients with a history of misdiagnosis

There are no clinical recommendations in this paper, no specific suggestions for how therapists might handle the aftermath of such misdiagnoses. Formulating recommendations of that kind wasn’t part of the remit.

However the clear and detailed picture painted of how these misdiagnoses come about, how they are communicated and why they are so harmful will give valuable support and encouragement to patients struggling with self-esteem as a result of similar histories of misdiagnosis/psychosomatic diagnosis.

It paints a clear picture for therapists who could be prompted by the detail in this report to ask more specific questions of their clients about medical encounters in their past and the likely effects these may have had on multiple areas of their clients’ lives.

Key messages from the study:

1. Psychosomatic and psychiatric misdiagnoses are associated with persisting adverse impacts
   in multiple domains, including patient wellbeing
2. The persisting impacts of psychosomatic and psychiatric misdiagnoses need recognition,
   clinician-patient discussion, and support
3. Psychosomatic and psychiatric misdiagnoses may be an iatrogenic (caused by doctors/medical situations) cause of mental health symptoms