Working with Epilepsy

Her name is Lily Silver. She is a woman, a person with epilepsy, and a successful lawyer. Yet despite her success, she shares the same fear all people with epilepsy encounter at one time or another – the fear of disclosing her epilepsy to her employer.

Silver’s seizures began when she was nine years old. She describes the seizures as fainting spells, which would then result in extreme lethargy. Since these episodes occurred only a couple of times in front of caregivers it was not thought of as epilepsy. In fact, it wasn’t until she was eighteen years old that she was officially diagnosed by a neurologist.

Currently, although her seizures aren’t completely controlled, she says they are manageable with an average of one tonic-clonic seizure and three partial seizures per year. Prior to starting her job (three years ago) as a junior associate at a prestigious law firm in NewYork, she was apprehensive, “When I first started, I was afraid that if I told my boss I had epilepsy that I would be treated differently. I didn’t want to be seen as someone who couldn’t get the job done,” said Silver. Instead of informing her employers of her epilepsy she chose to confide in a handful of coworkers. When she first told the select few about her epilepsy she says they were surprised, “I think the four people I chose to tell were shocked because they had this belief that people with epilepsy can’t function well with epilepsy. Now that I have educated them about my epilepsy, I see how much of a difference it has made in how they view me as well as epilepsy.” Silver derives comfort from knowing that in the event of a seizure, and loss of consciousness, that she has people around her at work who know what steps to take to assist her. Her advice to those with epilepsy debating on whether to disclose their epilepsy to their employer or not is this, “Be cautious about informing your employer, until you prove your skills and ability to do the job. You just never know what your employer’s attitude is towards epilepsy.”

Joyce Bender, CEO and Founder of Bender Consulting Services, Inc. (BCS), agreed with Silver’s decision not to disclose her epilepsy prior to being hired. “Under no circumstances should you disclose your epilepsy during an interview because it violates the American with Disabilities Act (ADA). You have to put ability first and your ability to do the job has nothing to do with your epilepsy.” Bender also believes that a person with epilepsy should only notify their supervisor of their epilepsy for safety reasons such as instructions on what to do in the event of a seizure. While she advocates caution she adamantly believes that people with epilepsy need not be ashamed. She is all too familiar with the stigma attached to epilepsy and remembers her very own neurosurgeon telling her not to tell others she had epilepsy, but rather to tell them she had a seizure disorder. “So many people with epilepsy are told to maintain silence, and not to use the word ‘epilepsy’ when disclosing. But, in my first conversation with Tony Coelho [former U.S. congressman and the principal author of the Americans with Disabilities Act (ADA) and the chairman of Al Gore’s 2000 presidential campaign] I learned a valuable lesson- it’s okay to say ‘I have epilepsy’, there is nothing to be ashamed of.”

Vocational Rehabilitation

While Silver and Bender are both employed and thriving in their chosen professions there are many people with epilepsy struggling to achieve financial independence through employment. For those suffering with pharmacoresistant epilepsy and uncontrolled seizures the workforce is a scary place. Yet, there are programs designed to help individuals with disabilities enter or reenter gainful employment called vocational rehabilitation programs (VR). Vocation rehabilitation programs include a vast array of services such as, career guidance, vocational training, job search assistance, referral to on-the-job training, post-employment services, medical rehabilitation services etc. Often times, the vocational rehabilitation counselor will work with the individual to create an individualized plan for employment, which helps the individual define and reach their employment goals.

“One of the roles of a vocational rehabilitation specialist is to help make people with disabilities job-ready. Our goal is to help the person find the right job with the right requirements that match the limitations of the disability,” said Karen Younkins, Supervisor of Maryland Division of Rehabilitation Services (DORS) and Rehabilitation Specialist. As a seasoned vocational rehabilitation counselor Younkins believes, that “one of the challenges that people with hidden disabilities such as epilepsy face, is the fact that employers don’t understand the nature of their disability because it is hidden. Hidden disabilities are the hardest for employers to understand because the person looks fine and seems perfectly capable of doing the job without limitations.” However, she maintains that with the help of a vocational rehabilitation counselor “a person with epilepsy can learn how to communicate with an employer in a way that highlights their skills, rather than their disability as well as educate their employer about epilepsy in a non-confrontational manner.”

Furthermore, she strongly encourages people with epilepsy to utilize vocational rehabilitation services in their area stating, “I highly recommend local department of vocational rehabilitation services because you don’t have to feel like you are going through this process alone.”

In a recent study conducted at the University of Missouri-Columbia, Dr. David Mount and colleagues found that with the proper vocational rehabilitation services, epilepsy patients can be successful at work.

David Mount, Psy.D., National Institute of Health (NIH) post-doctoral fellow and NIH National Center for Minority Health and Health Disparities Scholar,Department of Health Psychology, School of Health Professions, University of Missouri-Columbia and colleagues collected data retrospectively from 27 Missouri Department of Vocational Rehabilitation offices (DVR). Participants were 156 individuals diagnosed with epilepsy who applied for services from any of the 27 DVR offices between 2000 and 2001. The most common VR services were assessment,transportation,maintenance,job services, and training. In their data analysis they found that the delivery of VR services were the only significant predictors of positive employment outcomes. Overall, Mount et al. found that state VR programs can assist persons with epilepsy in becoming successfully employed, increasing personal income, and decreasing reliance in government support. “Those who are able to successfully complete the VT program from entry to placement enjoy the ability to be self-sufficient and reduce their dependency on family, caregivers and government support,”said Mount.

While the results of the study are encouraging Mount recognizes the limitations of a retrospective study saying, “ We really don’t know how long the people in this study who did gain competetive employment stayed in their job and long-term job retention is an important issue to address. We also don’t know why some people chose to stay in the program and others dropped out.” He also believes another potential shortcoming of the retrospective data analysis approach is the investigator’s inability to control what types of epilepsy specific data are collected. He hopes future research will be conducted to look at these factors, but is encouraged by the research results so far. “This is good news for patients with epilepsy. It shows that if we can identify the best complement of services for the patient, they can do well once they are placed in a job.”

Where can I find Vocational Rehabilitation Services?

To find a vocational rehabilitation program in your area you may contact The Department of Labor, Department of Education and the Social Security Administration.

Fear: The Ultimate Hurdle

To echo a famous quote by Lawrence Bixby, “Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along too.” People with epilepsy face hurdles each day as they carve out paths towards fulfilling and productive lives. Bender and Silver remind us to live within our limits, but to never stop dreaming and working towards our goals. Employment is not someone else’s dream. It is a reality for people with epilepsy and a dream within reach.