The glum 16-year-old girl sat disconsolately looking at her shoes, while her mother unfurled their story. Two years ago, seemingly out of the blue, her daughter reported that her abdomen hurt. She could not identify an antecedent event that triggered her pain nor could she discern a pattern to the variation in its intensity. Yet, her daughter’s pain was unremitting and disabling. Over time, the abdominal pain was further complicated by the development of a crushing headache, profound dizziness, and overwhelming fatigue. She became highly sensitive to almost all sensations—she could not tolerate light touch even from loved ones and the typical sounds of everyday life that occurred around her caused her to cover her ears. Even the light of day was too harsh for her eyes. These symptoms took their toll and she eventually stopped going to school and became increasingly socially disengaged. Her friends stopped calling, unable to understand her problems and consumed by their own, and she became increasingly isolated from the world. The flickering lights of the television bothered her eyes and the television sound had to be muted and watched solely with closed captioning. She stayed in bed most days and became weaker and weaker. Eventually, she became so incapacitated that she was unable to mount the stairs. Her parents were not strong enough to carry her and moved her into their first-floor bedroom, and she began sleeping in their bed. Throughout this ordeal, the family continually sought medical help and each physician whom they consulted, confronted with a preexisting extensive battery of uninformative investigative studies, subjected her to additional tests, hunting for rarer, more obscure diseases. When those test results came back as normal, some would refer her to even narrower subspecialists and others would state that there was nothing they could do for her, with the subtext that her problems were psychological. In the end, none of the 25 physicians whom she saw could offer an understandable explanation for her deterioration. The family took from these evaluations 2 competing messages—that their daughter’s problems were either extremely unusual or psychogenic. Either explanation further compounded their frustration and sense of hopelessness.
Schechter NL. The Descent. JAMA Pediatr. 2014;168(6):509-510. doi:10.1001/jamapediatrics.2013.5327