A woman’s laborious search uncovered the probable cause (ACNES) of her searing abdominal pain. Getting a doctor to help was much harder!

September 10th, 2023
shutterstock 1729510399

Timothy M. Whitney remembers his first impression of Juliane Potter Marx as she stood in his Bellingham, Wash., office on April 15, 2020, clutching a sheaf of papers and leaning heavily against a wall. Sitting, his new patient told him, was too painful.

“She failed the eyeball test,” the plastic surgeon recalled, referring to the quick once over doctors use to assess a patient. Despite a mask that obscured much of her face, Whitney said it was clear to him “this patient was really uncomfortable.”

Whitney had heard of Marx, then 69, whose unfortunate reputation as a difficult patient — or worse — preceded her. Over the course of 2½ years she had seen 23 doctors, most in Bellingham, a city of 92,000 midway between Seattle and Vancouver.

She had undergone tests, scans and procedures, been prescribed nearly two dozen drugs including narcotics, and spent months in physical therapy and psychotherapy in an effort to relieve the sharp pain that gripped her upper abdomen.

Her dogged search had turned up a possible diagnosis, but getting a doctor to take it — or her — seriously enough to greenlight effective treatment had been a spectacular failure.

Doctors dismissed it as a “crazy idea” in the words of one, or said they had never heard of the condition. Some told her they thought it might be plausible, but did not know where she could obtain treatment. Marx’s no-nonsense manner and growing desperation appeared to further alienate them.

“At no point was I rude,” she said. “I was seeking help and felt like word had gotten around that I was a drug seeker. It was so humiliating.”

Whitney was different. Marx did not strike him as someone with a psychological or drug problem. “I was willing to listen and experienced enough not to be put off by the ‘angry patient’ stuff,” he said.