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Article: ‘All in your head’: when doctors misdiagnose autoimmune disease as psychosomatic

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https://theconversation.com/all-in-your-head-when-doctors-misdiagnose-autoimmune-disease-as-psychosomatic-250953


‘All in your head’: when doctors misdiagnose autoimmune disease as 
psychosomatic
Published: March 3, 2025 8:41am EST

Author    Melanie Sloan    Researcher, Public Health, University of 
Cambridge

Disclosure statement

Melanie Sloan receives funding from LUPUS UK, The Lupus Trust, 
Vasculitis UK, and NIHR. She is an Associate Editor for Rheumatology 
(Oxford) journal and receives consultancy fees to her Long-Term 
Conditions Research Group at Cambridge Department of Public Health from 
Otoimmune, a company dedicated to creating innovative tools and 
resources to empower people with autoimmune conditions to better 
understand, manage, and improve their health.

-	-	-	-	-

Feeling disbelieved when knowing that there is something very wrong with 
your body can have devastating and long-term consequences. One of the 
most obvious consequences is that you won’t get the correct treatment 
and support.

A study my colleagues and I conducted of over 3,000 people with 
autoimmune disease uncovered many extra long-lasting disadvantages when 
the misdiagnosis involved a mental health or psychosomatic label (often 
termed an “in your head” misdiagnosis by patients).

These often included feelings of shame, self-doubt and depression. For 
some, it extended to suicidal thoughts and even suicide attempts.

A further consequence was that people had much lower trust in doctors. 
This distrust led to some people avoiding seeking further medical help, 
often for fear of being disbelieved again.

A concerning finding from our study was that these negative emotions and 
distrust often remained just as strong many years after feeling that a 
doctor had not believed their symptoms.

Psychological scars were deep and usually unhealed. Over 70% of people 
reporting a psychosomatic or mental misdiagnosis said that it still 
upset them. And over 80% said that it had damaged their self-worth.

One of our study participants, who had several autoimmune diseases, told 
her story that spoke for many: “One doctor told me I was making myself 
feel pain – I still can’t forget those words. Telling me I’m doing it to 
myself has made me very anxious and depressed.”


‘I still can’t forget these words’

These findings were not just anecdotal. Overall, we found depression 
levels were significantly higher and wellbeing levels lower in people 
who reported receiving mental health or psychosomatic misdiagnoses.

We chose to use this woman’s testimony in the title of our study: “I 
still can’t forget those words.” Not only did it accurately reflect our 
findings, but it symbolises our research team’s ethos to give these 
often unheard patients a voice.

The hurt of misdiagnosis was compounded by having “nowhere to voice my 
anger” or distress. Some of the most moving stories were from people 
whose early symptoms of autoimmune disease, when they were still 
children, had been disbelieved by doctors.

Even in middle or older age, those words and feelings had remained with 
them for decades, often felt as strongly as the day that they were 
heard. As one of the patient partners in our research team described it, 
they lived the rest of their lives with “seared souls”.

A woman with lupus told the interviewer that her doctor had told her at 
age 16 that she had “too many symptoms for it not to be hypochondria”. 
She spoke very emotively and articulately about the damage caused to a 
developing sense of self.

     It has affected my mental health very negatively and I do think 
it’s affected me in my like sense of self. It’s not good for anyone at 
any age but as a teenage girl being told you don’t know your own 
feelings is absolutely no way to shape a human being.

It is natural when hearing all these very difficult stories, and seeing 
the damage caused, to blame doctors, but is that fair? Doctors very 
rarely set out to cause harm. Rather, in some cases, it is impossible to 
diagnose autoimmune diseases quickly.

However, our study highlights that some doctors do reach too quickly for 
a psychosomatic or mental health explanation for autoimmune disease 
symptoms.

Some research that may have influenced doctors in giving psychosomatic 
misdiagnoses says that a long list of symptoms is a red flag that the 
symptoms are not caused by a disease. This generalisation rather 
dangerously fails to account for the fact that a long list of symptoms 
is also a red flag for many autoimmune diseases.

Many autoimmune symptoms are also invisible, and there are no clear 
tests that will show how bad they are to the doctor. Some of the terms 
that patients find upsetting and dismissive when doctors talk or write 
about their symptoms include “vague” and “non-specific”.

Doctors often write letters quickly due to health service constraints, 
sometimes unthinkingly using terms passed down from their seniors; 
letters that use terms like “patient claims” or “no objective evidence 
found of” can increase feelings of being disbelieved.
Empathetic listening

Our research suggests that more doctors need to think about autoimmunity 
as a diagnosis early on when faced with multiple varied symptoms that 
often don’t seem to fit together. Above all, many diagnostic clues can 
be found by listening to and believing the people experiencing the symptoms.

Empathetic listening and support are also required to help misdiagnosed 
patients heal emotionally – they very rarely can just “move on” as one 
doctor advised. We should not underestimate the power of doctors saying 
“I believe you” to patients with multiple invisible symptoms, and “I am 
sorry for what has happened in the past” if they had a difficult road to 
diagnosis.

Most of the 50 doctors interviewed for the study reported that 
misdiagnoses were common in autoimmunity, but few had realised that the 
repercussions of these misdiagnoses were so severe and long lasting.

Reassuringly, almost all of them were saddened and motivated to improve 
their patients’ experiences. Several explained that they thought they 
were being reassuring by telling patients that their symptoms were most 
likely to be psychological or stress-related and thought this would be 
preferable to patients worrying about having a disease.

Although many people experience mental health and psychosomatic 
symptoms, and doctors must consider them as a possible explanation, a 
clear lesson from our study is that psychosomatic (mis)diagnoses are 
rarely seen as reassuring to patients with autoimmune disease symptoms. 
Rather, they are usually deeply damaging with lifelong and life-changing 
repercussions.

--
Luke

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Article: ‘All in your head’: when doctors misdiagnose autoimmune disease as psychosomatic Luke <zumone2002@protonmail.com> - 2025-03-06 18:22 -0500

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