We all harbor secrets. Some are big and bad; some are small and trivial. Researchers have parsed which truths to tell and which not to.

Posted July 27, 2022 | Reviewed by Gary Drevitch

I've worked with many children and adults who've been told to seek mental health treatment by medical professionals, because their physical complaints were not real. These patients were told things like, "It's all in your head," "There's nothing medically wrong," or"You're fine and have to learn how to deal with the pain."

In over 30 years of practice, all of these traumatized patients - the majority of them females - did, indeed, have real medical issues. They were not hypochondriacs, attention-seeking, or experiencing a conversion disorder or a somatic symptom disorder. They were dealing with rare illnesses that weren't considered plausible in the medical community.

My clinical assessment of their symptoms suggested that mental health issues were not causal. Working together, the patients and I insisted on further medical assessments, seeking specialists out of state, and even contacting universities and research centers to find experts. Some of the uncommon medical disorders finally diagnosed included Chronic Appendicitis, Ehlers-Danlos Syndrome, Chiari Malformations, Meniere's Disease, Cyclical Vomiting Syndrome, and Pheochromocytoma.

It was not all in their head.

Rare diseases are tricky things when you look at them individually. It's true that a specific rare disease may affect only a miniscule number of children and adults. However, the number of rare illnesses is quite large. According to The National Organization for Rare Disorders (NORD) there are more than 7,000 rare diseases, with studies showing in the United States alone, as many as 30 million people experiencing a rare disease in their lifetime. So when we talk about a rare disease, it may not really be that rare.

In medical school, doctors in training are taught to consider common diagnoses and not rare ones. This enduring approach, based on the principle of Occam's razor, holds that simple explanations are preferred over more complex ones. So even though 4% of the world population is affected by a rare illness at any given time, most medical professionals believe it's unlikely one will present in their consultation room. But studies suggest otherwise, and indicate most physicians will come face to face with a rare disease in their professional career.

Some health professionals thoughtfully regard chronic pain and symptoms seriously, recommending standard diagnostic tests and assessments to identify what's wrong and offer treatment. When doctors don't readily have a diagnosis for a pateint's complaints, there are a variety of things they may do. Sometimes, they'll revisit your patient history and list of symptoms to dig deeper. They may send you for more tests, or refer you to a specialist. But sometimes, the physician shifts to a diagnostic explanation that's more psychological than medical: that your mind is causing your symptoms. Sometimes they might be accurate in this assessment. Other times, it may be a missed opportunity for further specialized medical evaluation.

It's been my experience that some doctors approach this mind-stress possibility with great care, professionalism, and respect for the patient. But others venture down this mental health path with a different attitude - one that demeans, stigmatizes, minimizes, and even bullies the patient. This is called medical gaslighting, and it's a traumatizing experience for a patient:

"You just need to take a vacation."

"No more questions today. I have other patients to see."

As Canadian doctor Sarah Fraser, has written, "Gaslighting has been used by physicians to dismiss women’s health problems, enforcing the misogynist stereotype that women are irrational and hysterical, a prejudice that dates back centuries."

Most patients with undiagnosed rare illnesses have endured frustrating and discouraging visits with doctors. Often they come to appointments with self-created files containing tests and reports that document their diagnostic odyssey. Sometimes, physicians find this helpful. Other times, it's met with a stigmatizing response, as seen in a recent June 2022 Twitter feed about patients who come in with notes.

Research tells us that many cultural groups have higher rates of medical misdiagnosis and underdiagnosis because of implicit physician cognitive bias: children, people of color, LGBTQIA individuals, women, those who are obese, the homeless, the mentally ill, and the elderly all may experience this kind of medical gaslighting.

When patients have chronic pain and are faced with dismissive responses that imply they're mentally ill, it damages the entire health-care industry by causing medical mistrust.

When it comes to your physical and mental health, you have to be your own advocate. You need to create a team of health-care experts who make you feel heard, seen and valued. Together you can work toward the same goal: uncovering what has yet to be identified.

Deborah Serani, Psy.D., is a psychologist and psychoanalyst who lives with depression and specializes in its diagnosis and treatment.

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We all harbor secrets. Some are big and bad; some are small and trivial. Researchers have parsed which truths to tell and which not to.