Even years later, patients whose symptoms were initially dismissed experience distrust and uncertainty with clinicians.
As a young child in the 1980s, Jiwa Farrell earned the moniker “Little Apple Cheeks” because her face was always so “cute and pink.” But by the time she was 6 years old, she had already begun recognizing that something else distinguished her from other kids besides her bright pink complexion..
“As soon as we went in there, she saw my blood work and didn’t even examine me before she snapped her fingers and said, ‘I know what this is,’” Farrell recalled. She ran tests to be certain, and sure enough, Farrell’s antinuclear antibody test came back positive. Farrell finally received a diagnosis of systemic lupus erythematosus.
Negative healthcare emotional states and beliefs, such as healthcare-related anxiety, trauma, loss of trust in clinicians, frustration, anger, and “burnout” in seeking healthcare; Sloan’s study similarly found higher rates of healthcare avoidance and of underreporting symptoms “from distrust and fear that symptoms would be disbelieved and misattributed again,” the researchers wrote.
When put on a psychiatric hold in a facility over an hour away from her home, her symptoms worsened. Despite being placed in a padded room, she was determined to break free and rammed her body against the walls so hard that the doctors eventually had to tranquilize her. She was diagnosed with a psychotic disorder “not otherwise specified” and prescribed antipsychotics.
“Almost all of the clinicians interviewed in our study were shocked and saddened by the level of long-term distress from these misdiagnoses and highly motivated to improve their patients’ experiences,” Sloan said. “Naming what has happened and aiming to have a shared understanding of what has contributed to the misdiagnosis and its consequences are the first steps,” Lahijani said. “Then, it’s about building trust and taking on the approach that the provider and the patient are a team.”
Systemic Lupus Erythaematosus SLE Systemic Lupus Erythematosus (SLE) Lupus Children Child Childhood Pediatrics Kids Pain Management Anxiety Disorder Epilepsy Seizure Disorder Hospitals Anxiety Facial Fatigue Fibromyalgia Pain Arthralgia Painful Joint Joint Pain Depression Blood Psychosomatic Psychosomatic Disorder Psychophysiologic Disorder
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