UF study reveals fear of discrimination keeps many people with epilepsy out of the workplace

December 12, 2006

JACKSONVILLE, Fla. — The unemployment rate among people with epilepsy is considerably higher than the national average — not necessarily because they have frequent seizures or can’t find jobs but because many continue to fear workplace discrimination, a new University of Florida study reveals.

The fear of discrimination at work was the major reason cited for continuing unemployment when UF researchers interviewed nearly 300 patients with epilepsy in northeast Florida and southeast Georgia in September 2005. Only about a third of patients in the study were employed. Nationally, the unemployment rate hovers at 4.5 percent, according to the U.S. Department of Labor.

The study, described in the journal Epilepsy & Behavior, describes a complex problem, said principal author Dr. Ramon Bautista, an assistant professor of neurology and director of the Comprehensive Epilepsy Program at the UF College of Medicine-Jacksonville.

“The problem encompasses employers and companies who hire these people as well as the patients themselves, who may or may not want to work in the first place,” Bautista said. “Even though the Americans with Disabilities Act makes it illegal to discriminate on the basis of one’s disability, there are still employers who may think twice about hiring someone with epilepsy.”

More than 2.7 million Americans live with epilepsy, a disorder in which nerve cells in the brain misfire, sometimes causing them to lose control of body movements.

In the study, UF researchers asked patients about age, gender and race, and also about seizure frequency and the types of medications they took. In addition, they surveyed study participants about their employment status.

The survey addressed a whole range of issues — whether patients worked, if they worked full time or part time, if they had previous work experience, how important working was for them both personally and financially, how supportive their family was of their working and how much they feared workplace discrimination.

“As medical practitioners, we understand why persons who have bad seizures, who are maintained on several seizure medications or have had epilepsy for many years, are less inclined to work — that didn’t surprise us,” he said. “(But) our study shows that if they perceive they are discriminated against at work, they’re not going to work — whether rightly or wrongly. Likewise, if patients have a low personal regard for work, they will likely remain unemployed, even if their medical condition is stable.”

The study revealed that 40 percent of the participants feared workplace discrimination, while only 60 percent of those surveyed — including those whose seizures were controlled — regarded work as an opportunity for personal growth and fulfillment. These fears were the main factors associated with unemployment.

The study did not document the types of discrimination experienced or feared, but discrimination typically takes many forms, Bautista said.

“Discrimination can occur in hiring practices and advancement in the workplace,” he said.

“It very well may be only perceived rather than actual discrimination, but if epilepsy patients believe that they have less of a chance in the workplace, then they’re less likely to even want to try to work,” he added.

The study findings are important because they strongly suggest that people with epilepsy face major challenges in gaining and retaining employment, said Dr. Elson So, a neurology professor and director of the Section of Electroencephalography at Mayo Clinic College of Medicine.

So, who has published research on employment after epilepsy surgery, cited several important things the public and physicians should know about epilepsy and employment.

“First, epilepsy in most persons is well-controlled and, as a group, occupation-related accident rates in persons with epilepsy are not substantially greater than persons without epilepsy,” he said. “In addition, the productivity of persons with epilepsy is as good — and often better — than other persons, and, finally, for persons whose seizures are not fully controlled, employment conditions must be evaluated on a case-by-case basis, because workplace accommodations can usually be made if necessary,” he said.

UF researchers say that as the treatment and control of epilepsy continues to improve, health-care professionals need to look beyond the clinical disorder itself and encourage and help their patients return to the workforce.

“For many people, work is an important part of life — there’s a sense of fulfillment that comes with being employed,” Bautista said. “It would be a shame if we in the health-care profession ignored that and focused on just the medical needs of our patients.”