To Disclose or Not: Can You Afford to Bring Your Epilepsy to Work?

By Regina Reid
EpilepsyUSA staff
Updated: January 6, 2004

Fighting the stigmas associated with epilepsy can be one of the toughest challenges of dealing with the disorder, especially in the workplace.

What conclusions will your employer or potential employer draw if you disclose your condition? Will he or she be afraid to hire you or think you don't have the mental capacity to do the job? Will your co-workers be uncomfortable around you? You don't want to appear ashamed of a medical condition you can't control, but you don't want to be unfairly judged because of it.

While there are laws to govern an employer's actions, no amount of laws can govern attitude. Employers don't have the legal right to ask if you have epilepsy during an initial interview, although they later may ask about any condition that would affect job performance. Despite the laws, however, many people with epilepsy fear the laws won't keep employers or others in the workplace from making judgments about their abilities once their condition is made known.

Safety Concerns

The kind of seizure a person has factors into the disclosure decision. A person having a complex partial seizure at his or her desk may be able to do so without great disruption. But the employee who suffers from tonic-clonic seizures may want others to be aware.

Another major consideration regarding disclosure is the job itself. What kind of work is it and in what environment? Will yours or someone else's safety be in jeopardy if you had a seizure while performing your job and no one knew of your condition beforehand?

Employees in office or retail settings may not necessarily have the same degree of concern regarding physical safety as others who work in hospitals or factories, but that doesn't make the issue of disclosure any less important.

What's Right for You?

There are those who opt not to disclose having epilepsy until and unless a seizure occurs, hoping to stave off any potential bias until a seizure necessitates a discussion. Others choose to disclose up front, immediately eliminating the element of surprise should a seizure occur in the presence of co-workers.

Still others want to wait until they feel more secure and comfortable with their employer and their track record as an employee, and hope a seizure doesn't occur before they reach that comfort level.

Kara, who lives in Northern Virginia, never considered keeping her epilepsy a secret from her employers. She feels she has nothing to hide.

"My seizures are well-managed," she said, "but I do have a breakthrough now and then." She disclosed her epilepsy up front and worked for the company for 20 years.

"Disclosing up front is an employer screening process for me," she said. "If an employer didn't want to hire me because of epilepsy, I wouldn't want to work for them, anyway.

"It also allows me to feel secure in the knowledge that my peers will act appropriately should I have a seizure."

When moving to a new job, Kara did tell her co-workers about her seizures, "but for some reason," she said," I didn't tell my supervisor until necessary."

The issue of driving the company vehicle was raised, and she told her boss that while she had seizures that were controlled, her license was restricted and periodically reviewed by the DMV.

"The response was, 'if the state allows you to drive then that's okay with me,'" she said.

Michelle of Cuyahoga Falls, Ohio advocates always telling your supervisor and co-workers of your condition. All of them.

"Even though I'd told my boss when she hired me, the assistant manager on shift one day didn't know I had epilepsy," she said, "and I had a grand mal while I was at work. I worked at a clothing store and was folding men's sweaters on a metal table when I had the seizure.

"The assistant manager was on break and a co-worker had to run to find her. I woke up embarrassed with firemen and ambulance personnel around me. A customer said she had to give me mouth-to-mouth because I stopped breathing. You may have your seizures under control now, but you never know when one can sneak up on you."

Disclosure Equals Discrimination?

There are some who feel that if your seizures are well-controlled, telling your employer about your condition only subjects you to possible differential treatment.

"It's professional suicide," one worker said.

One employee hadn't planned on revealing his condition to his employers, but they became aware after he had a number of seizures over several months. Although he has been well-controlled since then, he says he has seen less experienced people be promoted while he has not been.

When he asked why, he was told some of the potential supervisors were leery of hiring him into their departments because of his seizures, assuming his epilepsy would compromise his ability to do the job.

Christine from New York City agrees that, unfortunately, honesty isn't necessarily the best policy.

"Few of us have the time to wait to find a sympathetic employer," she said. "We are looking out for ourselves here."

Revealing May Educate

People who choose not to disclose at all are generally those who have achieved very good control of their seizures. They feel that if a seizure is not likely to happen on the job, then no one needs to know about their condition.

Even still, there are individuals like Tom, from Wilkes-Barre, Pa., who choose to "come out" about having epilepsy as a means of educating others about the disorder.

"Sometimes our co-workers could use a little educating," he said. He prefers to disclose only after he has "established a track record for being a good worker and a generally all-around nice guy." Even then, he said, it is a casual reference and "only under circumstances where I can be neutral about it.

"After I've been around and people get to know me, I will put on my Medic Alert bracelet in the outer office in front of others," Tom said. "When someone asks me if I have diabetes (which is the usual scenario), I tell them I have epilepsy, but it's controlled and I wear a bracelet because it's a good idea.

"One of two things will happen. Either they will express fear that I will have a seizure in front of them, which I play down, or they will tell me that a friend or relative also has seizures.

"If they are fearful," he added, "I tell them my seizures are controlled with medication, which tends to make me tired. I also mention that most seizures are not medical emergencies, although they often look pretty dramatic."

No One Answer

Whether starting a new job or newly diagnosed and considering what to do in your current workplace, the issue of disclosure must be approached carefully and thoughtfully.

While some have found it liberating to be "out of the closet" about epilepsy, others have found disclosure to be a professional hardship they'd just as soon not bear. What is right for you will depend on your degree of control, the demands of your job and your relationship with your supervisors and peers.