Thanks to these insights and our growing knowledge of
the complex ways the brain affects the body, practitioners and
researchers are developing more nuanced ways of treating such
patients. Some are tailoring cognitive behavioral strategies
specifically to address physical symptoms, while others are
creating and testing models that see poorly understood or
unexplained conditions as multifactorial, the result of complex
biopsychosocial factors (see article, page 71).
No matter what the ultimate cause of a client’s physical
symptoms, however, psychologists’ main focus should be on
helping patients cope with their symptoms and develop a better
quality of life, just as they would with a firm organic diagnosis,
says Ellen Dornelas, PhD, a health psychologist who sees
patients with cancer and other medical conditions at Hartford
Hospital in Hartford, Conn.
“The body and mind work together in mysterious ways,
and there are a lot of permutations in why people develop
physical symptoms,” Dornelas says. “I strive for a dialectic
that acknowledges both the person’s physical and emotional
symptoms, and then work on helping people make positive
outside doctors. Participants must have an illness that has never
been described or identified; a rare illness, defined as one that
affects fewer than one in 200,000 people; or an uncommon
variant of a more common illness.
Living with the unknown
While there are plenty of unanswered questions about the nature
and cause of mysterious physical symptoms, there is no question
that these patients suffer as much as or more than those whose
illnesses have a concrete organic label, experts agree.
For one thing, they’re living with uncertainty. “Not having
a [firm or organic] diagnosis to pin something on means that
the course of the illness itself is unknown and the treatment
is unknown,” Dornelas says. “It’s a big challenge when that
happens, and it understandably makes people feel distraught.”
They must also contend with society’s view that because
they lack a diagnosis or known organic cause, they’re not really
sick, says Kevin O’Brien, a nurse practitioner at the National
Institutes of Health’s Undiagnosed Diseases Program, which
sees extremely ill patients who, despite extensive testing, have
not received an adequate diagnosis (see sidebar).
“A good number of our patients have multiple chronic
problems and are clearly sick, but to the outside world they look
fine,” he says. “They’re hearing, ‘It’s all in your head,’ but they
know there’s something wrong, even though they don’t know
what it is. So they face both the uncertainty of their condition
and the social stigma that comes along with it.”
suffering affects people and what tools can help alleviate
their suffering. Psychologists can submit proposals on these
or related topics either to NIH institutes or to the program’s
research arm, the Office of Rare Diseases Research, says O’Brien.
They’ll have further chances to collaborate once NIH funds
several extramural academic centers as program partners in
June, he notes.
For more information, visit the National Institutes of Health’s
Office of Rare Diseases Research at http://rarediseases.info.nih.
gov/, or its Undiagnosed Diseases Program at http://rarediseases.