If you or someone you know suffers from a mental illness like depression, schizophrenia, or an eating disorder, you know it can take years to arrive at a proper diagnosis. For the first time in two decades, a new edition of the go-to manual used by psychiatrists to diagnose such disorders is being released, but not without controversy.
Amy Dahlberg-Chu says she's been suffering from depression since she was 11 years old. At 26, she was diagnosed with bipolar disorder.
"Originally, doctors just thought I had some anxiety, maybe it was depression, so they prescribed some anti-depressants, but often for people with bipolar disorder, giving them antidepressants isn't really a good idea if you're not giving them a mood stabilizer as well," she said.
Over the years, Amy has seen several different doctors.
"Sometimes I just felt like I was getting labeled and labeled and labeled, and to be honest, the label doesn't really matter, and what matters are that the symptoms that I'm having are being addressed," she said.
Amy's symptoms included anxiety. She said she cried a lot and had a lack of motivation. Sometimes, she couldn't even get out of bed. She's been hospitalized twice for depression.
But Amy also suffered periods of mania, when she couldn't sleep, and would act impulsively - drinking excessively and putting herself in dangerous situations.
To get a handle on Amy's symptoms, doctors have prescribed her a variety of medications.
"I think doctor's don't really know how these medications work, and they're kind of throwing things at you, hoping its going to work, and then if it doesn't they just throw something else at you," she said.
Amy's now 40. She's married and the mother of a seven-year-old son. She says her symptoms are finally under control. She sees a psycho-pharmacologist - that's a type of psychiatrist - every six weeks, to tweak her medications if needed.
Amy’s mental health journey has been an odyssey, one that she shares openly as a patient advocate. She believes psychiatrists need to learn more about underlying conditions to symptoms.
"There is not enough data out there to really understand what the cause is, so we end up getting diagnosed with multiple things, when in fact there is a physiological problem going on, and its only when psychiatrists really understand what's going on in patients' brains, in their bodies," she said. "I think at that point maybe we'll get to a more precise science."
Currently, psychiatrists diagnose an illness based on a cluster of symptoms as defined in a big book with a big name: the Diagnostic and Statistical Manual of Mental Disorders, or DSM, for short. For example, Amy was diagnosed as bipolar because she showed symptoms that were listed in the DSM under the disease category "bipolar disorder."
But this type of symptom-based diagnosis is a problem for the National Institute of Mental Health, a main source of research funding.
"We will fund proportionally less research with the DSM categories," said Bert Cuthbert who coordinates research at the NIMH. "DSM categories were created before we really knew anything about the brain. So we had to diagnose on the basis of symptoms. It became increasingly clear that there are collections of people who shared symptoms but didn't have the same things wrong with them."
Cuthbert, and his colleagues at NIMH, say psychiatry is an imprecise science that has not kept pace with the rest of modern medicine. Consequently, the government will focus its funding on research that incorporates the study of genetics, brain circuitry, and neuron behavior, so that diagnoses can be based on more than just symptoms.
This is a seismic shift. The DSM has been the status-quo since 1952.
Psychiatrist Jeffrey Lieberman says this shift is part of the evolution of medicine. Lieberman is the president-elect of the American Psychiatric Association, which writes the DSM.
"Everyone would like nothing more than to know the causes of depression, of schizophrenia, of Alzheimer’s disease, of autism, of obsessive compulsive disorder, why some people get addicted and others don't, why some people have PTSD and others don't," Lieberman said. "We would like nothing better. But we don't know at this point."
Lieberman says that just like a stethoscope or blood pressure cuff, the DSM is a tool used to assist doctors in evaluating a patient’s health. Next week, a new edition of the manual will be released. It will be the best diagnostic tool that doctors have.
