Dismissed symptoms linked to suicidal distress in autoimmune patients with FND

Patients with autoimmune diseases who were told their neurological symptoms were functional, psychological, or "all in their head" have described being left feeling suicidal after dismissive diagnostic consultations, according to a new international study led by the University of East Anglia in collaboration with the University of Cambridge and a network of NHS and academic partners. The research, published in the journal Rheumatology International, examines how functional neurological disorder (FND) diagnoses are used and understood in people living with autoimmune diseases, and reveals deep disagreements between patients and clinicians over what is actually causing complex neurological symptoms. FND is a recognised neurological condition that can cause symptoms such as weakness, shaking, changes in movement or sensation, and non-epileptic seizures.

Crucially, these symptoms are real: they are not fabricated and are not under a person's conscious control. Yet the study found that when this diagnosis was delivered poorly, without adequate explanation or empathy, patients interpreted it as an accusation that their suffering was imagined or self-inflicted. Lead author Dr Melanie Sloan, from UEA's Norwich Medical School and the Department of Public Health at the University of Cambridge, said the research team wanted to understand why patients and clinicians can see the same symptoms so differently, and to identify practical ways to improve communication, reduce distress and help ensure patients receive the most appropriate care and support.

The evidence base for the study is unusually broad. The researchers analysed responses from international surveys involving 1,853 patients, 400 clinicians and 463 members of the public, and complemented these surveys with in-depth interviews with patients and doctors. They examined how complex neurological symptoms arising in the context of autoimmune diseases are diagnosed, interpreted and communicated in real-world healthcare settings, where rheumatologists, neurologists and psychiatrists may each offer a different account of the same presentation.

The numbers reveal a striking hierarchy of acceptance. While 86 per cent of patients agreed that a diagnosis of depression was correct, only 53 per cent agreed with a diagnosis of fibromyalgia and just 30 per cent accepted a diagnosis of FND. Acceptance collapsed further when symptoms were framed as psychosomatic: only seven per cent of patients agreed with being told that their symptoms were "psychosomatic".

The clinicians themselves reported considerable difficulty in working out what is causing symptoms in this population. Many said they had received little training in FND, and others held very strong opinions either for or against the diagnosis, a polarisation the study's title captures with the phrases "false dichotomies" and "FND fundamentalists". Patients and doctors both reported examples of symptoms being attributed to the wrong cause, with misdiagnoses occurring in both directions: sometimes functional symptoms were mistaken for active autoimmune disease, and sometimes genuine disease manifestations were dismissed as functional or psychological.

Dr Sloan cautioned that medicine still does not know enough about some of the ways autoimmune diseases affect the brain and nervous system to always be certain what is causing a particular symptom, and that there may be many different causes of neurological symptoms in autoimmune diseases which are very hard to untangle. Stigma emerged as a powerful force shaping both diagnosis and experience. Doctors were much more likely than patients or the general public to believe that mental-health symptoms carry less stigma when attributed directly to physical disease: 72 per cent of doctors held this view, compared with 50 per cent of patients and 48 per cent of the public.

Professor Guy Leschziner, a neurology consultant at Guy's and St Thomas' hospital, highlighted the historical roots of the problem, noting that FND used to be known by outdated and offensive terms such as "hysteria", and that some of the old ideas behind those terms have unfortunately carried over into contemporary thinking. He added that it was once believed FND almost invariably had a psychological trigger, but this is now known not to be the case, and there is growing interest in how physical illnesses, including autoimmune diseases, may play a role in FND. The human cost of poor communication was stark.

Some patients described feeling distressed when an FND diagnosis seemed to suggest their symptoms were psychological or within their control. Poor explanations led to feelings of guilt and shame, loss of trust in their doctors and, in some cases, expressed suicidal thoughts. Michael Bosley, a patient and co-author of the study, said that how doctors explain diagnostic uncertainty really matters: people need to know their symptoms are being taken seriously, understand why doctors think a particular diagnosis fits, and feel able to return if things change.

He reported that the damage done by an explanation that was unclear, rushed, or dismissive of the patient's experience was clear, with several patients in the study describing suicidal feelings after an unempathetic diagnostic consultation. Patient co-author Lucy Calderwood raised an equally troubling structural concern: that receiving one of these diagnoses may depend more on the individual doctor's views and pre-judgements than on the patient's actual symptoms. The same patient with the same symptoms could see two different doctors and be told by one that the problem was the autoimmune disease and by another that it was functional, receiving completely different treatment as a result.

The study did identify what helps. Patients were more likely to accept a diagnosis when doctors listened to them, explained why they believed a symptom had a particular cause, and clarified how symptoms linked to FND differed from those caused by the underlying autoimmune disease. The researchers call for better teamwork between rheumatology, neurology, psychiatry, patients and other specialists, and for listening not only to the patient's symptoms but also to what the patient feels may be causing them.

Clearer explanations of diagnoses, they argue, could help patients understand and accept them, while doctors need to remain cautious when the cause of symptoms is not clear rather than reaching quick conclusions. Senior study psychiatrist Professor James Bourgeois, from the University of California, framed the clinical message in broader terms: the brain and the body are closely connected, and symptoms experienced in the brain, such as depressed or anxious mood, confusion or irritability, go along with pain, weakness and other bodily symptoms of illness. Brain-related symptoms can be the first sign of illness, so doctors need to consider them alongside body-related symptoms; they are part of the illness and are not under the patient's direct control.

Comprehensive care, he argued, requires managing brain and body symptoms together in an integrated way, with doctors being honest about what is not yet known. The findings come shortly after research from the same programme found that females were more likely than males to report that their symptoms had previously been attributed to psychiatric or psychosomatic causes, underscoring the importance of recognising gender and other biases in medicine.

Subject of Research: Patient and clinician experiences of functional neurological disorder diagnoses in autoimmune disease

Article Title: How dismissed symptoms can push patients to breaking point

Article References: How dismissed symptoms can push patients to breaking point. Original publication (Bibliographic details unavailable.)

Image Credits: AI Generated

DOI: Not provided

Keywords: functional neurological disorder, autoimmune disease, misdiagnosis, stigma, doctor-patient communication, rheumatology, neurology, psychiatry, survey study, diagnostic uncertainty, suicidal distress, patient experience