Epilepsy Talk

Epilepsy and Employment | November 13, 2012

It’s a myth to believe that individuals with epilepsy are less capable than others when it comes to job performance. People with epilepsy perform well in many job fields. Case in point: Supreme Court Chief Justice John Roberts.

People with epilepsy are involved in heading corporations, medicine, teaching, caring for children, working in retail and customer service positions and lots of other vocations.

Yet, many employers wrongly assume that people with epilepsy should automatically be excluded from certain jobs. They believe that anyone with epilepsy cannot safely operate certain types of machinery, drive, or use computers.

The reality is that anti-seizure medications and other treatment methods totally control seizures for more than half of the people with epilepsy.

And, of course, it depends on what type of epilepsy you have. For example, lots of people only have nocturnal seizures or seizures that don’t cause loss of consciousness or motor control.

Searching for a Job

Skills, abilities, qualifications and experience are the qualities that employers should be most interested in when considering someone for employment. Your epilepsy is only relevant if you have seizures that are likely to interfere with your ability to do your job.

If you don’t have a good job, your epilepsy is not necessarily the thing that is holding you back from the kind of job you might like to have.

It’s important not to use your epilepsy as an excuse for employment issues such as your general suitability, your qualifications and experience, your availability, your aptitude, your attitude, your ability to work with other people, your readiness to go the extra distance for you employer, your willingness to learn more about things that are related to your job, and so on.

Ok. Let’s say you’ve been hired…

Disclosing Epilepsy with a Potential Employer

It’s not always necessary to discuss epilepsy with a potential employer. Whether you do or not is up to you. If you have excellent seizure control and the employer does not ask any health-related questions, there’s no reason to start talking about epilepsy unless you want to.

Under the Americans with Disabilities Act (ADA), employers may not ask any health-related questions until after they have offered you the job.

The important thing is whether you are able to do the job as described. Employers are also required to make reasonable accommodation for a disability.

If you decide to talk about your epilepsy, or if you have to because of a legal question from the employer (after a job has been offered), remember that the more confident, well-informed, and relaxed you can be, the more reassured your employer is likely to be.

Explain how long you’ve had epilepsy and how well it’s controlled. If you drive, say so. Say how long you’ve been seizure-free. Explain that research studies show the longer people are free of seizures, the greater the likelihood they will stay that way.

If you’ve never had a convulsive seizure in your life, mention that as well. Remember, the average person thinks of epilepsy as falling on the floor, convulsing and other scary types of behavior. (They just don’t know any better.)

If you have only occasional seizures, point that out, too. Explain that if one should occur, it will only last a very short time. And always explain how this condition actually affects your ability to perform in a job.

Remember, too, people who have acquired good job skills have a better chance of getting a job, whether or not they have epilepsy.

“I’ve had E since I was 21, and I never had any problems with it preventing me from getting a job for 30 years. The trick is don’t let the employer feel as though you think it’s an issue, and they won’t feel it’s an issue.” — David Osborne

On the down side; employers may discriminate because of the stigma associated with epilepsy, misconceptions about its medical and social aspects, unfounded fears of legal and medical liability and the misconception that people with epilepsy are not as productive as others.

These biases have led to discrimination and considerable hardship, but new laws have begun to change the landscape of employment opportunities for people with epilepsy and other disabilities.

Interestingly enough, some employers fear hiring people with epilepsy because they are concerned about higher workplace insurance rates or believe that employees with epilepsy will use a lot of sick leave.

Workplace insurance rates, however, are determined by how hazardous the type of work is and by an employer’s overall claims record in the past, not by the physical condition of individual employees.

There is no evidence that people with epilepsy are more prone to accidents on the job than anyone else. Finally, because medications usually can control seizures for most people, they do not need to take time off from work because of their epilepsy.

And if you choose to disclose at the time of hiring that you have epilepsy, an employer only may ask two questions: whether he/she needs a reasonable accommodation, and if so, what type.

The employer also must keep any information an applicant discloses about their medical condition confidential.

Your particular seizures may not require any first aid or help. But if you might need assistance, you should work with your employer to create a plan of action.

How Should I Tell My Coworkers?

Here area few tips to follow when discussing your epilepsy:

1. It’s often a good idea to review first aid measures. Others need to know what happens during a seizure. The explanation should be reassuring. It is normal for them to be frightened when first watching a seizure, so they should be told that the risk of serious injury is small and that the seizure does not cause pain.

2. They should know what is going to happen when you have a seizure such as how you may behave before, during and after the seizure, what they should and should not do if one occurs. (Like not to stick anything in your mouth during a seizure, because the belief about swallowing the tongue is a myth.)

3. You should tell them when to call for medical personnel or an ambulance, but it should be emphasized that this is rarely necessary for a person with epilepsy who has a single seizure.

4. Coworkers should also know that you may be confused after a seizure but should be left alone if you are in a safe place and seem to be all right. They should not hold or restrain you unless it is absolutely necessary for safety.

And if you do have a seizure, when you have fully recovered and returned to work, you should acknowledge what happened, thank the people who were helpful and ask if they have any questions.

(I chose to tell one person in each setting because I was in advertising at a highly visible job with lots of meetings, presentations and clients galore. And no, I didn’t tell the clients!)

“The thing is, being up front is important. Telling them you have E is important, but I would advise doing it after the job offer. Otherwise they may ‘go in a different direction’ because of it and have no fault.

Telling a potential employer has two advantages, one is that they are aware in the event that you have a seizure at work. The other benefit is that you can potentially get something from your doctor that says that if you are feeling ill or what have you, you can take off with no repercussions for you. Its called an intermittent leave of absence.

I had one at a call center before and had to take off at least once a week…but at another job they wouldn’t hear of it. That was my experiences though.” — Nickolas Doty

What Are My Legal Rights?

Unfortunately, sometimes it’s is necessary to take legal action to keep a job. The Americans with Disabilities Act (ADA) prohibits discrimination in the workplace based on a person’s disability if the person is capable of performing the essential duties of the job.

Reassignment may be necessary where an employee with epilepsy can no longer perform his job, with or without reasonable accommodation, unless the employer can show that it would be an undue hardship.

The new position should be equal in pay and status to the employee’s original position, or as close as possible if no equivalent position is available. The new position does not have to be a promotion, although the employee should have the right to compete for promotions just like other employees.

If you feel that you have been fired or demoted because of your epilepsy (and your company’s Human Resources Department is not able to help), think about seeing a lawyer. In many places, this kind of legal assistance is available at low cost.

Your first step should be to become informed about the relevant laws and the restrictions about disability discrimination. (It may be helpful to speak with a representative of your local EFA Chapter.)

You could also speak with the protection and advocacy staff of the state human rights commission, the Equal Employment Opportunities Commission (EEOC), or a social worker who specializes in employment issues.

The ADA (American with Disabilities Act) applies to all employers, employment agencies, labor organizations, and joint labor-management committees in which at least 15 employees work for each working day in each of 20 or more calendar weeks.

The ADA excludes the federal government or other employers that receive a certain level of federal support (because they are subject to other similar regulations), as well as Indian tribes and private-membership clubs that are exempt from taxation.

Title I of the ADA provides that people with disabilities cannot be excluded from employment unless they are unable to perform the essential requirements of the job. An employer may not discriminate in:

Recruitment, advertising, and job application procedures…

Hiring, upgrading, promotion, demotion, tenure, transfer, layoff, termination, return from layoff, and rehiring…

Rates of pay or other compensation and changes in compensation…

Job assignment, job classification, position descriptions, lines of progression, structures and seniority lists…

Leaves of absence, sick leave, or other leave…

Fringe benefits, whether or not administered by the employer…

Selection and financial support for training, including apprenticeships, professional meetings, conferences and other related activities, and selection for leaves of absence to pursue training…

Activities sponsored by the employer, including social and recreational programs…

Any other term, condition, or privilege of employment.

Tip: “Your best places you want to look for jobs is find places that post EOE ( Equal Opportunity Employment). These type of places are in agreement to hiring people with disabilities.

They work with the disability act and if you are hired, even if you have not told/written or they have not asked if you have any disability. You have a seizure on the job, they are supposed to work with you and figure out a plan that works for both of you.” — Kari Lynne Brauer

I think that’s excellent advice.

To subscribe to Epilepsytalk.com and get the latest articles, go to the bottom box of the right column and click on “Sign me up!”

Resources:

http://my.epilepsy.com/epilepsy/social_employment

http://www.eeoc.gov/facts/epilepsy.html

http://www.epilepsyfoundation.org/livingwithepilepsy/employmenttopics/index.cfm

http://www.epilepsyfoundation.org/livingwithepilepsy/employmenttopics/findingemployment.cfm

http://epilepsy.med.nyu.edu/living-with-epilepsy/epilepsy-and-lifestyle/employment-epilepsy

http://epilepsy.about.com/od/managingyourepilepsy/a/work1.htm

http://www.nevdgp.org.au/info/epilepsyf/info/employment.html

http://my.epilepsy.com/epilepsy/newsletter/feb10_job


23 Comments »

  1. Thank you. This is very important information for those of us with epilepsy who are able and want to work.

    Like

    Comment by Tom — November 13, 2012 @ 1:38 PM

    • YES VERY IMPORTANT!! I worked over 25years,mostly as Auto Mechanic all Licensed/CERTIFIED w/2yr college degree in Auto Technology. OE Dr. retire,new Dr. switch me from Dilantin to Keppra-SEIZURE!,1st 1 in over 15yrs. Dr. fill out paperwork to remain work as Mechanic,keep mechanic Licenses. Only problem-IDIOT Dr. is sent paperwork to Employer instead of where it should go-even listed at top of forms where to send back. W/no Mechanic Licenses-OUT DOOR WENT. Now no work,apply Disability-TURNED DOWN-i can pretty much do all did before but not as fast. I WANT TO WORK,over $10,000.00 in mechanic tools sitting in garage. Sell-?? Never get anything close to what i paid. Toolbox alone over $5000. TURNED DOWN/DENIED DISABILITY-NOW WHAT??? ED

      Like

      Comment by lckyedd — July 22, 2013 @ 8:40 AM

  2. You know, I was fortunate enough to meet the Commissioner of the EEOC and they really have been working hard.

    Especially to make epilepsy considered a “handicap” so that we fall under all the non discriminating rules…and reap the advantages. (So to speak.)

    Like

    Comment by Phylis Feiner Johnson — November 13, 2012 @ 6:42 PM

    • Thank you for this advise. Now I’ll know what to do in the future when I try to go back to work. I have alot of folks say I do a good job while I volunteer and they also think I could be out thier working. We all can’t do things as fast as we once did,but just show the efforts that we can work.

      Like

      Comment by Corina — November 13, 2012 @ 9:46 PM

  3. I think that with a little bit of determination and a bit of advice you could be out there too. Determination and effort are the first and most important steps!

    Like

    Comment by Phylis Feiner Johnson — November 13, 2012 @ 10:37 PM

  4. PFJ: I am now one month into not taking ANY Dilantin.I do take Vimpat. I have also spent over 8000 dollars (US dollars) removing the teeth that turned black/grey while taking it. Now, I have something called a “flipper” in my mouth and indeed, it flops around. Occasionally a piece of food gets UNDER it, and this is painful—but much less painful that a seizure in publc!. The last dental visit, to add some kind of dental appliance that replaces the pulled teeth,and one that simply dead, with something that I put in my mouth, pull out when I brush my teeth, etc. I even sleep in it. Thank god the hub has yet to see the open mouth with missing teeth in the front. Some things I just cannot eat in public: steak,,popcorn,
    and anything that will move or move about, the dental appliance.And my health insurance will not pay for the dental work that was made necessary because of epileptisy
    meesher@pacbell.net

    Like

    Comment by meesher@pacbell.net — November 14, 2012 @ 4:37 AM

  5. Michelle,

    Congratulations on being off the Dilantin! How long were you on it?

    I know Dilantin gave me galloping gum rot, but I was much more fortunate than you. I just need my gums scaled every 4 months.

    Since the dental work was a necessity, why won’t the insurance company pay for it? Or does your coverage only extend to minimal dental work? (I know that mine does and unfortunately, today most health insurance covers very little dental or eye insurance.)

    Is it something you can contest? After all, it had more to do with your epilepsy than dental work itself.

    Like

    Comment by Phylis Feiner Johnson — November 14, 2012 @ 9:05 AM

    • I think the Vimpat is the key: I’m not planning to go without it. Vimpat does not make me crazy-mad-semi conscious, and I have not had a seizure in over 2 years. But I have yet to drive. I am waiting for a Navigation system to be installed in my car. I know where I want to be: but I often miss the freeway exit, or turn on the wrong street. Living as I do, in the mountains, the scenery changes with the seasons: the things I memorized in snow, are different in summer. I know, I grew up with seasonal changes, but when I was moved to Southern California, at 19, I got used to everything being the same, save the few days it actually rained. I’ve been in Northern California for 12 years now, and snow used to mean “ski!” to me; now it just means get a local teen to scrape the driveway so we’ll both get out of it. But the snow usually melts off early in the season and late in the season. Damn shame I’m too old to downhill ski—the years before I was diagnosed (and there certainly were a few I do not recall) are simply “gone”.
      Still battling reality,

      Michele

      Like

      Comment by meesher — November 16, 2012 @ 4:05 AM

      • I have a navigation system, plus I use Mapquest just for a back-up and I STILL get lost.

        And I’m talking about going to my doc’s…mother-in-law’s…oldest friend. Arthur calls me “The Lost Girl.”

        Can I blame it on the drugs? At least that will give me some vindication. (Although I’ve ALWAYS been like this. And I’ve lived in PA for 25 years.)

        Like

        Comment by Phylis Feiner Johnson — November 16, 2012 @ 8:57 AM

  6. Phylis,

    Having seen life with & with out Epilepsy,,, There is NOTHING like productive life, waking up on the morning, striving to get something done, working hard at what you are good at, feeling accomplished what one set out to do & making an earning the way meant to be, just like ordinary people, doing ordinary work.

    I’m sure most of us prefer being employed, with no preconditions attached to our conditions.

    And I’m sure, we are capable of doing the EXACT professional carriers ordinary people do for living.

    Most likely, Society/Employer is very uninformed, misinformed & dis-informed about our conditions, just like I use to be, before coming up with Epilepsy just few years ago.

    Therefore, convincing employers that SEIZURES can be controlled with medications or surgery, gets to be harder than getting the job done by an Epileptic.

    LETS FACE IT,,,These days,, “LIABILITY” comes to every employers mind than productivity & accomplishment.

    Therefore, while we may LOVE to be productive people, society may NOT be as forthcoming as we would like it to be, making our conditions some how different than ordinary regular every day people with no EPILEPSY.

    I hope, I’m NOT discouraging anyone but, life is NOT picnic with epilepsy.

    Let’s hope employers are as understanding, considerate, inclusive & accepting as we would like them to be.

    Wishing you all the best.

    Like

    Comment by Gerrie — November 14, 2012 @ 9:35 PM

    • amen, my son lost his job due to his medicine change last year due to his new insurance not paying for his lamictal and having to go on generic, 10 years of no seizures down the drain. Well we thought losing his job and no insurance did qualify him for free med’s thru Bridges but now his medicine that worked for all these years does not work anymore. Well unemployment runs out in 4 weeks so looks like we are going to start not telling anyone about seizures till after job is given.
      Buddy

      Like

      Comment by Buddy — December 2, 2013 @ 9:21 PM

      • Buddy, do you mean your son lost his Lamictal because of his job? Or he lost his name brand Lamictal to the generic because of his job’s insurance plan?

        It’s unlawful to fire someone just because they have epilepsy.

        And workplace insurance rates are determined by how hazardous the type of work is and by an employer’s overall claims record in the past, not by the physical condition of individual employees.

        Like

        Comment by Phylis Feiner Johnson — December 3, 2013 @ 8:58 AM

  7. Hooray for Gerrie and your insights!

    I love: “Therefore, convincing employers that SEIZURES can be controlled with medications or surgery, gets to be harder than getting the job done by an Epileptic.

    LETS FACE IT,,,These days,, “LIABILITY” comes to every employers mind more than productivity & accomplishment.”

    All over the world, the consequences of epilepsy are often the cause of more suffering than the seizures themselves.

    As for liability, we live in a law-suit crazy world, where people are perched on their haunches, just waiting to strike. But in one way, that’s more a help (if you manage to get a job) than a hindrance…witness all that the EEOC has done.

    But in the end, you’re 100% correct. You hit the nail on the head when you said: “There is NOTHING like productive life, waking up in the morning, striving to get something done, working hard at what you are good at, feeling accomplished in what one set out to do & making an earning the way meant to be, just like ordinary people, doing ordinary work.”

    The question is: could this be a wish…a promise…or a reality?

    Like

    Comment by Phylis Feiner Johnson — November 15, 2012 @ 12:16 PM

  8. My problems are the side effects of the meds keep me from working. Topamax,carbatrol and lamictal. Never know how my day will be when I wake up.
    ,

    Like

    Comment by Jack — November 29, 2012 @ 2:50 PM

  9. That’s a tough one, Jack. I don’t know what your field of talent is, but could you possibly work from home?

    (Like me, fortunately, I’m a writer.)

    Another thing to consider is working for an EOE ( Equal Opportunity Employment) company. These type of places are in agreement to hiring people with disabilities.

    Like

    Comment by Phylis Feiner Johnson — November 29, 2012 @ 6:01 PM

  10. Anybody at all that can provide assistance-I WOULD GREATLY APPRECIATTE IT. Idiot Dr. SWITCH MEDs-??-caused me to have seizure-WHILE DRIVE. Now no work,no drive-just sit at HOME on ASS-GOING CRAZY!Anybody who can provide assistance-PLEASE PLEASE DO. ED

    Like

    Comment by lckyedd — February 12, 2013 @ 1:32 PM

    • Is there any public transportation near you? Could you split gas and ride with someone from work?

      Like

      Comment by Phylis Feiner Johnson — February 12, 2013 @ 1:54 PM

    • Lckyedd,

      You are NOT alone.

      I’ve NEVER even had speeding ticket, before ending up having a car accident “due to epileptic seizures”, according to the “Police ACCIDENT REPORT witnesses on scene”, allowing the STATE to immediately SUSPEND my driver License.

      All of a sudden, the news spread out like WILD-FIRE in the same company I helped build with the first 10 employees & worked for 25 years,that “CERTAIN PERSONNEL” in the management “ARE COMPLAINING ABOUT YOUR SEIZURES” & suggesting “YOU” take a vacation or early retirement.

      BOILING MY BLOOD,,,

      And, the “best idea” my Neurologist & his Hospital can come up with is “APPLY FOR DISABILITY (SSDI), until “we controlled your seizures, trough medications or Brain Surgery”, as if applying & getting approved for SSDI was “FEDERAL EXPRESS OVER NITE DELIVERY”.

      MY POINT,,, You will & can come over this nightmare, by staying strong & DEVISING a way to CROSS THE BRIDGE.

      CALL THE COUNTY, APPLY ON LINE OR VISIT YOUR,,, Employment (EDD) & Social Security Office, DEMANDING TO PERSONALLY SPEAK TO MANAGEMENT & explain your predicament & I’m DEFINITELY SURE, the EDD & Social Security Office, will provide you with Case Worker, Employment Counselor & Public Transportation, IRON OUT to hep your case.

      Lckyedd,
      I taught my world CRASHED with Epilepsy, car accident, loss of driver License, lose of employment, loss of families, “friends”, co-workers”,,but I’m surprised I survived to be writing this note to you.

      Therefore, if I can make it, so do you.
      Just START SOME WHERE, flying against the storms & you will end up knowing you can overcome ALL ODDS.

      WISHING YOU ALL THE BEST.

      Like

      Comment by Gerrie — March 6, 2013 @ 2:59 PM

  11. Hey guys, what happened to the EEOC?

    The most recent contact info I have is:
    Constance S. Barker — Commissioner.

    Her address is 131 M Street N.E. — 6th Floor, Washington, DC 20507

    Telephone: (202) 663-4027
    Fax: (202) 663-7121
    Email: constance.barker@eeoc.gov

    I would suggest a telephone call. (An email will just end up in junk folder because the address book doesn’t recognize you.)

    Of course, you’ll never speak to Constance, but tell the person on the phone your situation (briefly) and ask her to direct you to a person on the commission who can help you.

    And if all else fails, there’s the EFA Legal Aid.

    http://www.epilepsyfoundation.org/resources/epilepsy/legal/index.cfm

    Like

    Comment by Phylis Feiner Johnson — March 6, 2013 @ 3:59 PM

    • EXCELLENT DIRECTION 🙂

      It’s good that Lckyedd, came to the right place, asking the right questions.

      I never heard of EEOC nor did I knew which way to go about, when everything COLLAPSED.
      Though, the sailing was NOT as smooth as I thought, wished & hoped to be, thanks God, I finally learned a whole lot from people like you, for BIRDS OF THE SAME FEATHER, FLY TOGETHER.

      BTW: Besides CHURNING prescription after prescriptions & setting up for another appointment after appointments, it would have been GREAT, if the Doctor’s Office, Hospitals, Pharmacies,,, could have been able to PROVIDE DEPENDABLE ASSISTANCE or RELIABLE INFORMATION, where EXACTLY the patients must go, seeking IMMEDIATE REMEDY for transportation, housing, employment,,, etc, difficulties, when patients are FORCED to lose life time treasures.

      Yes Phillis, LOSING TREASURE TO ONLY END UP HOLDING MEDICATIONS DOES NOT SEEM A BETTER WAY TO CURE HEALTH DIFFICULTIES.

      Transportation, housing, employment,,, ANY INFORMATION which can help the patient to deal with EVERYDAY LIFE with epilepsy is a treasure.

      YES Phillis, when the whole world seems to be COLLAPSING, any information, any direction & anything to hold on, to avoid sinking in the storm of EPILEPTIC life is a treasure.
      Let’s hope Lckyedd, keeps trying EVERY VENUE POSSIBLE to cross this bridge & over come the difficulty of ADJUSTING in to whole new different world.

      Again, Thank you for your devotion to help us overcome EVERY DAY LIFE with Epilepsy, it would NOT have been EASIER with out you.

      Like

      Comment by Gerrie — March 6, 2013 @ 6:25 PM

  12. Well, the United States Equal Employment Opportunity Commission was the last trick in my book.

    I went to one of their “town meetings” which was very positive and they seemed sincerely interested in adding people with epilepsy to the “handicapped” category, so that we can get the same legal and economic advantages as others.

    Like

    Comment by Phylis Feiner Johnson — March 6, 2013 @ 7:25 PM

  13. I had a seizure at work the day before yesterday, I got a Dr statement saying I was OK to return to work yesterday. I was then fired and told not to return to work. I received a call yesterday in which they recorded me asking me lots of questions stating I may be approved for workers compensation to cover my ambulance ride….. I still don’t understand that! My Keppra is not guaranteed to work 100% of the time but I’ve been denied disability and need to work and pay my bills!!!! What am I supposed to do????????

    Like

    Comment by Jackie — April 8, 2017 @ 11:47 AM

    • Contact your local Epilepsy Foundation and ask for legal/advocate help. They come across this frequently.

      This is clearly discrimination and I’m sorry it happened to you Jackie.

      Like

      Comment by Phylis Feiner Johnson — April 8, 2017 @ 1:51 PM


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

    Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 2,295 other followers

    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: