Patients turn to doctors for answers, but what happens when the answer is wrong? 

When Jessica Gray was 16, numbness and loss of feeling in her arm landed her in her pediatrician’s office. Perplexed, the pediatrician referred her to Lurie Children’s Hospital for testing. Gray went in multiple times for imaging and blood work.

On her last visit, the staff asked her and her mother to wait in a small consultation room. When six clinicians came in — including a family counselor — Gray was sure she was dying, she recalls 20 years later.

Gray wasn’t dying, though. It turned out she had a rare condition called thoracic outlet syndrome — a condition of compressed nerves in the space between the first rib and collarbone. She wouldn’t need chemotherapy or radiation, but physical therapy and pain relief.

“I’m not the normal candidate for someone who would have that,” Gray says. “It’s athletes and people who have been in car accidents. They told me I was fine, that it wasn’t life or death, but it would be something I’d deal with lifelong.”

Then in her early 20s, Gray noticed a lump on her right shoulder. A doctor referred her to a surgeon, who looked at her arm and immediately referred her once again. “He said, ‘I’m not even going to charge you for this. I’m not the doctor for it,’” Gray recalls. 

He handed Gray a card and told her she needed to contact the doctor listed — a cancer specialist. “I was being told, without being told, that I had cancer,” says Gray, who is now 36 and lives in River West.

The referral to a cancer specialist would be jarring at any age, but especially as a young adult, Gray didn’t know what to make of it. 

The cancer specialist eased her nerves. He told her she had a noncancerous growth that he could remove through a quick surgery. Gray underwent the surgery, but a few years later, when fluid built up in the same spot and she needed to have it drained, yet another physician wanted to conduct a biopsy to check for cancer.

Gray knew she didn’t need the biopsy and ended up leaving the hospital.

“I just needed the fluid in my shoulder drained,” she says, incensed at the memory, seven years later. “I wanted to speak to HR. They kept saying the doctor was going to call me to apologize. He never called.”

Roughly 12 million outpatients in the U.S. — about 1 in 20 adults — receive a misdiagnosis annually, according to a 2014 study from the journal BMJ Quality & Safety. And an estimated 40,000 to 80,000 individuals die annually due to misdiagnoses, the Society to Improve Diagnosis in Medicine (SIDM) reports.

For those misdiagnosed, the experience can be devastating. They may feel fear or grief. And crucially, a misdiagnosis means they’ll lose precious time treating the actual ailment.

Yet, for Gray, fear pales in comparison to her exasperation. “I feel like the frustration over the years of constantly having to defend myself and the knowledge I have about my own health is way worse than the fear I felt as a teenager,” she says.

Study the symptoms

Alyx Rose, 30, of Schaumburg, had a similar experience. She has mild cerebral palsy, and in January 2021 began experiencing chronic joint pain and fatigue. Physical therapy initially helped ease her symptoms, but the pain eventually returned.

“My doctor thinks it merely has to do with cerebral palsy, aging, and the trauma that I’ve experienced since my early 20s,” Rose says. “I accept that I may never have a diagnosis, but it would be nice to know how to manage the symptoms.”

Feeling ignored and brushed off, Rose is still struggling to get a concrete answer. She says that because of no significant signs of a particular problem, it has “been easy for professionals to automatically assume nothing is wrong.”

Elusive diagnoses and misdiagnoses are a two-way street between doctor and patient. Bradley Schulman, a personal injury attorney at Motherway & Napleton in Chicago, says that sometimes doctors try to see the easy answer first and then work to the hard. Medicine is extremely complicated, he adds. 

“Misdiagnosis is twofold. One piece is doctors not having or taking enough time to draw up a thorough history with each individual patient, and just as important, patients not feeling comfortable enough to provide doctors with complete and accurate information regarding their symptoms,” he says. 

Learning from experience

Charles Bareis, MD, chief medical officer at MacNeal Hospital in Berwyn, agrees. He once encountered a diagnostic error with an emergency department patient who had shortness of breath due to pneumonia.  

As the on-call physician, Bareis remembers reviewing the patient’s chest x-ray and notes from the emergency department. “The picture was not typical for pneumonia, but I didn’t go further and challenge myself to consider what else it might be. I accepted the diagnosis from the ED without digging deeper,” Bareis says.

The next day, the patient’s shortness of breath worsened. The doctor on call ordered a CT scan for further evaluation. The scan revealed not pneumonia, but a pulmonary embolism — a potentially fatal blood clot in the lungs. Bareis says the new set of eyes on the case caught his oversight — and potentially saved the patient.

“From a patient’s perspective, a misdiagnosis has affected their life in some major way,” Schulman says. “Patients should tell their doctors everything — not hide things, not keep things to themselves. It really makes sure that the doctor understands what they’re telling them, because most of what doctors do is based on what patients tell them, so it’s vitally important for that to happen.”

From the physician’s perspective, Bareis says it’s important to give patients the facts and be honest. It’s equally important to maintain a respectful, trust-based relationship.  

“Sometimes diagnoses such as anxiety or depression, or somatization may manifest with atypical physical symptoms,” he says. “Taking the time to fully appreciate and evaluate a patient’s concerns will help build a trusting and therapeutic relationship.”

  Gray and Rose are just two of many people who have gotten lost in the search for a diagnosis. But better communication between patients and doctors, along with patients advocating for themselves, can help hone in on elusive health conditions.

“If something feels off, don’t ignore your symptoms or pain,” Rose says. “It’s scary to face the possibilities, but the sooner you face it, the better off you’ll be. Always continue to advocate.”

Gray has spent years advocating for herself but acknowledges the privilege inherent in self-advocacy. “I am a coherent, young, educated person. I’m educated on my own health, in general, and in the healthcare system,” she says. “But there are so many people who go to hospitals who are elderly, who are children. They can’t [necessarily] advocate for themselves. They might not have the mental capacity or resources.” 

Gray says she wants a healthcare system in which doctors spend more time with their patients, and patients can trust their healthcare team. “I’m always ready to question everything: Explain this to me, show this to me, tell me what you think this is.”

She hasn’t found that yet. “I still haven’t had my shoulder drained,” she says. “I don’t trust anyone.”

Originally published in the Spring/Summer 2023 print issue.