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For Migraine Sufferers, Stigma Adds to Burden

By Ellin Holohan
HealthDay Reporter

FRIDAY, June 25 (HealthDay News) -- People who suffer from chronic migraine headaches feel more rejected, ridiculed, and ostracized by family, friends, and employers than patients with other neurological troubles, a new study contends.

And the more severe the condition is, the more stigma victims experience, the Philadelphia researchers say.

Lead author Dr. Jung E. Park, a neurological resident at Thomas Jefferson University Hospital, said that people are often skeptical of claims about migraine headaches because they are intangible. "You can't see it, so people don't understand the condition," she said, and co-workers and employers sometimes "think the person is trying to get more time off for something unimportant" because they "don't think the pain and suffering is real."

Many people with migraine experienced "separation, exclusion and rejection in their relationships with family and friends when their condition prevented them from fully engaging in family and social events," the study found.

The greater the stigma, the lower the quality of life for migraine sufferers as measured by absence from work, family events and social life, according to the study, which the authors say is the first to look at migraine and stigma.

The findings are to be presented this week at the annual meeting of the American Headache Society (AHS) in Los Angeles.

The study relied on the Stigma Scale for Chronic Illness, an instrument developed at Northwestern University, to compare the stigma experienced by chronic migraine sufferers with people who have episodic (non-chronic) migraine, stroke, epilepsy, Parkinson's, Alzheimer's, and amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). The scale measures factors such as how often people feel criticized, misunderstood or ostracized for having an illness.

The scores of 246 adult migraine sufferers -- all outpatients at the hospital's Jefferson Headache Clinic -- were compared to those of people with the other neurological conditions. Half of the people with migraine had the headaches episodically, while the other half suffered from chronic migraine.

Those with chronic migraine scored significantly higher on the stigma scale than either people with episodic migraine or those with other neurological conditions, Park said.

The stigma can reach deep into migraineurs' personal lives. For example, Park said she has known married couples who divorced because migraines were misunderstood.

"A husband felt that things weren't the same when his wife couldn't have sexual intercourse or maybe take care of the children as much as she once did," said Park. "When something impacts functioning like this, and is not well understood, we tend to stigmatize."

AHS president Dr. David Dodick said the research was important because people with migraines have been strongly stereotyped in the past as "high-strung, neurotic women who can't handle daily stress."

Three times as many women as men get migraine, noted Dodick, "likely due to the effect of fluctuating estrogen levels on brain excitability" during the reproductive years.

And while onlookers may sometimes be skeptical about the reality of migraine, migraine "is a real biological disorder," Dodick said. Migraineurs typically become sensitive to light and sound, and often suffer from nausea, diarrhea, and changes in blood pressure. These conditions can persist even when no headache is present.

While migraines are genetically based in many cases, people who get them tend to be less-educated and have relatively low incomes because their functioning is so affected by the disease, Dodick said.

"There is such a thing as being 'present' at work but not really being able to function well," noted Dodick, a professor of neurology at the Mayo Clinic in Scottsdale, Ariz. Many migraine sufferers lose their jobs because of their illness, he said, and because of stigma "many people are afraid to admit they get migraines." Sufferers can often become depressed, he added.

However, the new research "starts a conversation and is a step toward banishing the stigma and allowing individuals with migraine not to suffer in silence, and hopefully eliminates the burden, as they are already burdened enough by the disease," said Dodick. "Hopefully, this research will help them come out of the closet."

More information

Find out more about migraine at the American Migraine Foundation.

SOURCES: Jung E. Park, M.D., resident in neurology, Thomas Jefferson University Hospital, Philadelphia; David Dodick, M.D., president, American Headache Society, professor of neurology, Mayo Clinic, Scottsdale, Ariz; presentation, June 23, 2010, annual meeting, American Headache Society, Los Angeles

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