Lori Chapo-Kroger was an active intensive care unit nurse, but after a series of mysterious symptoms began a decade ago, her thinking became "cloudy" and she said her legs "felt like they were made of lead."
"I felt like every system in my body was collapsing," said Chapo-Kroger, who lives in Grand Rapids, Mich. "I remember not even being able to stand up to make my own bed. I literally lay on the floor and had to ask my daughter to change the bed sheets for me. She was 13."
But for three years she went from doctor to doctor, all who told her she was crazy, that her symptoms were in her head.
"They said, 'You don't look sick,'" explained Chapo-Kroger, now 54 and in a wheelchair. "The more I pushed and tried to be normal, the worse I got."
She was finally vindicated in 2005 when doctors at the Mayo Clinic diagnosed Chapo-Kroger with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic and complex illness that is associated with dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems.
But Chapo-Kroger's symptoms could easily have fit the criteria for a controversial psychiatric illness that will appear in the latest Diagnostics and Standards Manual or DSM-5 -- somatic symptom disorder.
The newly-labeled psychiatric disorder has fueled a debate among patients and advocacy groups who fear that broader and "looser" criteria may make it easier for doctors to dismiss patients as mentally ill when in fact they have a physical illness.
Somatic (or bodily) symptom disorder or SSD is characterized by symptoms that suggest physical illness or injury that are either "very distressing" or result in disruption in a person's functioning. The symptoms are also often accompanied by "excessive and disproportionate thoughts, feelings and behaviors," according to the American Psychiatric Association.
Extreme anxiety and "overwhelming fear" are classic symptoms. To be diagnosed, a person must have these symptoms for at least six months.
Some criteria for disorders like chronic fatigue require post-exertion collapse for six months before doctors can give a diagnosis.
"Anytime someone has a chronic illness, you have a fixation on your health," said Chapo-Kroger, who is president of the P.A.N.D.O.R.A. network, an organization that helps those with poorly understood neuro-endocrine-immune disorders. "Studies on people after heart surgery say they got depressed afterwards. Who wouldn't when they face their own mortality?"
Critics worry that patients will be misdiagnosed as mentally ill and won't get treatment, affecting mostly those with chronic and difficult to diagnose neurological disorders and multi-system diseases like ME/CFS, ones that are poorly understood and can take years to get medical answers.
"A lot of people will be written off as crocks -- it's just in their head," said Dr. Allen Frances, who was chair of the task force that created the DSM-4 and professor emeritus of psychiatry at Duke University. "They won't get the medical work-up they need. A lot of times they diagnose it as depression and anxiety and they get stigmatized."
But Dr. Joel E. Dimsdale, chair of the committee that reviewed the SSD diagnosis and professor emeritus in psychiatry at University of California, San Diego, says that patients who will be identified must demonstrate more than "existential" angst.
The new diagnosis will give primary doctors the tools to get more people help for disabling anxiety about illness -- an estimated 5 to 6 percent of the population. But Dimsdale agrees, doctors must always "take symptoms very seriously," investigating all medical explanations.
SSD as a diagnosis replaces four somatic disorders that were "confusing" and rarely used by doctors, according to Dimsdale.
"At its simplest, it's a way for the doctor to keep track of the nature of the problem he sees in patients and what sorts of treatments are effective," he said. "Some people feel like a diagnosis is a Scarlet Letter, but actually those in the DSM-4 were quite stigmatizing and pejorative."