A new study included thousands of people suffering from autoimmune diseases, some of whom were initially misdiagnosed as having “psychosomatic” disorders. (Image credit: Monkey Business Images via Shutterstock)
The feeling of disbelief when you realize that something is wrong with your body can have devastating and long-lasting consequences. One of the most obvious consequences is the lack of proper treatment and support.
A study by my colleagues and I of over 3,000 people with autoimmune diseases found many long-term disadvantages when misdiagnosis was linked to mental health or psychosomatic problems (patients often refer to this as misdiagnosis “in their head”).
These shortcomings often included feelings of shame, self-doubt, and depression. For some, this led to suicidal thoughts and even attempts.
Another consequence was a significant decline in trust in doctors. This mistrust led some people to avoid seeking medical care, often out of fear of being distrusted again.
A disturbing finding from our study was that these negative emotions and mistrust remained just as strong even many years after patients felt that their doctor did not believe their symptoms.
The psychological trauma was profound and often did not heal. More than 70% of participants who reported psychosomatic or mental health misdiagnosis said it still caused them distress. More than 80% said it had negatively affected their self-esteem.
One of our study participants, who suffers from several autoimmune diseases, told a story that was familiar to many: “One doctor told me that I was causing my pain – I still can’t forget those words. When he told me that I was creating it, I became very anxious and depressed.”
“I still can't forget those words”
These findings were not just anecdotal. Overall, we found that depression rates were significantly higher and well-being levels were lower in people who reported receiving misdiagnoses for mental health or psychosomatic reasons.
We decided to use this woman’s testimony in the title of our study: “I Still Can’t Forget Those Words.” Not only does this accurately reflect our findings, but it also symbolizes the spirit of our research team – to give a voice to these often overlooked patients.
The pain of being misdiagnosed was compounded by the fact that there was “no place to express my anger” or suffering. Some of the most moving stories were from people whose early symptoms of autoimmune disease, when they were children, were ignored by doctors.
Even in middle or old age, these words and feelings stayed with them for decades, often as powerful as the day they were spoken. As one of our research group members described it, they lived the rest of their lives with “burned souls.”
A woman with lupus told an interviewer that her doctor told her at age 16 that she had “too many symptoms for it not to be hypochondria.” She spoke with great emotion and eloquence about the damage done to her developing sense of self-worth.
It had a terrible effect on my mental health and I think it affected my self-esteem. It's bad for anyone, no matter what age, but being told you don't know your own feelings is absolutely no way to build a person.
Naturally, when you hear all these difficult stories and see the damage done, you want to blame the doctors, but is that fair? Doctors very rarely intentionally cause harm. Rather, in some cases, autoimmune diseases cannot be diagnosed quickly.
However, our study highlights that some clinicians are too quick to attribute the symptoms of autoimmune diseases to psychosomatic or mental causes.
Some studies that may have influenced doctors to make incorrect psychosomatic diagnoses claim that the long list of symptoms is a red flag
Sourse: www.livescience.com
