All in Your Head: When Doctors Misdiagnose Autoimmune Disease as Psychosomatic

Feeling Disbelieved: The Devastating Consequences of Being Told “It’s All in Your Head”

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 Reveals the Severity of the Problem

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).

Feeling of Shame, Self-Doubt, and Depression

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

Consequences of Being Misdiagnosed

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 Lasting Impact

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

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.

A Personal Story

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.

A Call to Action

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.

Conclusion

Feeling disbelieved when knowing that there is something very wrong with your body can have devastating and long-term consequences. Our study highlights the importance of empathetic listening and support in the diagnostic process. Doctors must consider autoimmunity as a diagnosis early on when faced with multiple varied symptoms. Above all, they need to listen to and believe the people experiencing the symptoms.

FAQs

Q: What are the consequences of being misdiagnosed with a mental health or psychosomatic condition?

A: The consequences can be severe and long-lasting, including feelings of shame, self-doubt, and depression, as well as lower trust in doctors and avoidance of seeking further medical help.

Q: How common is misdiagnosis in autoimmunity?

A: According to our study, it is common, but the repercussions are often severe and long-lasting.

Q: What can doctors do to improve the diagnostic process?

A: Doctors should consider autoimmunity as a diagnosis early on, and engage in empathetic listening and support to help patients feel heard and believed.

Q: What can patients do to cope with the consequences of misdiagnosis?

A: Patients can seek support from loved ones, mental health professionals, and patient advocacy groups to help them cope with the emotional trauma of misdiagnosis.