Plain English Guide to DSM

By Lisa Gillespie, Kaiser Health News

As mental health professionals, policymakers and advocates focus on taking steps to mend the fragmented mental health care system, the role of patients and their friends and families is sometimes overlooked.

That’s why the American Psychiatric Association is releasing a first-of-its-kind book to decode in plain English the Diagnostic and Statistical Manual of Mental Disorders — a guide for mental health providers that is also used to determine insurance coverage. The resource, Understanding Mental Disorders: Your Guide To DSM-5, includes in-depth explanations of risk factors, symptoms and symptom management, treatment options and success stories.

This gets at one of APA’s reasons for releasing this volume — to help create a more accurate picture of what a particular illness or disorder might involve.

Jeff Bornstein, a psychiatrist and spokesman for APA, said empowering patients with a better understanding of what they are facing will enable them to better advocate for themselves.

“Sometimes when there is a disagreement with a managed care company, the clinician speaks on behalf of the patient,” Bornstein said. “But it’s [also] helpful to have family [members] or the patient talk and say ‘I’m telling you, I have this symptom, it’s part of diagnosis X, Y and Z. Why are you not letting me have the treatment I need?’”

Former Rhode Island Congressman Patrick Kennedy, a mental health advocate, said the book is designed to help families and patients overcome stigma and get more involved in treatment. He said it would have helped him in his own experience with bipolar disorder and alcoholism. “I was the last one to know I had a problem, and that’s often the case for those of us in crisis. … The people around me would have benefited from this,” he said at an event marking the book’s launch.

When people think they may have an issue, or are faced with a diagnosis, they often go to the Internet where misinformation and “horror stories” are widespread, said Paul Gionfriddo, president of mental health advocacy group Mental Health America. “This [book] lays out in clear terms [what a mental disorder diagnosis means] so we don’t have to live in fear of the unknown.”

Take the experience of Melanie Carlson, 33, who suffered a psychotic episode in 2007 when she was 25. She ended up in a hospital, frightened and confused.

“It was a very traumatic incident. I was afraid of my own thoughts and what I was capable of,” said Carlson, who lives outside Ann Arbor, Mich., and manages her bipolar disorder with medication, exercise, therapy and abstaining from alcohol. But for almost a year-and-a-half she was in denial and refused treatment, mainly because she says her only knowledge of her condition came from media reports about high-profile, often violent events involving mental illness.

She says having more straightforward information could have helped her understand that she could take care of her disorder and still live a normal life — with a job, friends and family.

“It felt like a hopeless situation,” Carlson said, who is now a social worker helping chronically homeless people get housing. “If I’d had a resource that explained my symptoms … and explained how complying with treatment could produce long-term stability I would not have been … resistant.”

It’s all part of the steady process of removing the taboo from treatment, said Jorge Petit, a psychiatrist and founder of Quality Healthcare Solutions Group, a health care and behavioral health consulting firm in New York City. “It’s no different than diabetes and hypertension — it requires awareness and understanding of how to maintain wellness and not to relapse,” he said.

However, he added that the playing field is still not even. “It’s hard for people to call the insurance company and say, ‘Why are you sending me a prior authorization notice? It’s the same as having a medical issue.’”

Kaiser Health News (KHN) is a nonprofit national health policy news service.