'One doctor told me I was making myself feel pain': What happens when autoimmune disorders are misdiagnosed a 'psychosomatic'

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."

Related: It's not 'all in your head' — neurologist Suzanne O'Sullivan on psychosomatic illness

'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.

This edited article is republished from The Conversation under a Creative Commons license. Read the original article.