Feature article: Let's talk about work issues when you have epilepsy and seizures (Christina Dykenga)
Did you know that 3.4 million people in the United States struggle with seizures? This is a lot- it is not a rare condition, but unfortunately, it is not publicized as much as other conditions.
Working when you live with epilepsy can be a struggle for many people, including myself, but with creativity and grit, it does not need to be impossible. That is what this article is going to address.
I had my first seizure at age 17 (1990) and then had no more until 2009. After that, I had a seizure-free stretch until 2016 and, unfortunately, then 'all hell broke loose,' so to speak. My seizures are tonic clonic, with no warning and because of that, I have been injured many times.
Despite dealing with epilepsy, I was able to complete a master's degree and worked for 25 years as a social worker in mental healthcare. Of those, 13 years were spent working in a hospital. This was an especially ideal workplace because they were aware of how to respond if I had a seizure; they were caring. My last job stretched over 4 years. I was employed by an insurance company as a care manager and later, as a Senior Care Manager. I had worked my way up in the field and was proud of it. The job was 60% performed from my home and 40% required for me to do home visits. Due to my seizures, after a month of temporary disability and because I could not drive, Human Resources created a new position for me which was 100% at home. They also gave me a much smaller caseload, decreasing it from 120 cases to about 20. This new system worked for a bit, but then the seizures again became uncontrollable and my memory and cognitive function also began to suffer. As a result, I could not retain information. I was forgetting all kinds of work details. At that point, I became a candidate for surgery and again went on temporary disability. However, since my doctor could not put a return to work date, they terminated me. I have no anger about this. The company really tried to accommodate my needs, but when a job can no longer accommodate your needs, they can let you go as per ADA guidelines (read more about ADA below). At that point, I applied for Social Security Disability Insurance (SSDI) in November and was approved in May, which is very rare because it can often take a lot more time and applications to be granted these benefits.
When I had surgery, I was left with some left-sided weakness and coordination problems for which I went to rehabilitation and physical therapy for 6 months. My memory, short and long term, as well as general cognition have continued to be severely affected. My hope is that one day, I may be able to return to the workforce either as a volunteer or to a lower stress, part-time job, but for now I am focusing on medication adjustments and decreasing seizures. Also, because I like to stay occupied, when I heard that NEREG was looking for a volunteer writer for the Northeast Regional Epilepsy Group newsletter, I signed on and this is my first article.
I would like to say as well how grateful I am to my incredible doctor, who has stood by me through all of this. Sometimes I wonder if he gets frustrated; he has never shown it, but I ask myself because it has been such a long road.
My advice for working (depending on severity of your epilepsy) and whether you're able to drive is that ideally you should look for a position that involves "at home" work (which after COVID 19, is not such an unusual thing anymore since companies and workers have realized that a lot can be done from home and not necessarily in an office). Even jobs that required being "on the road" have adjusted in these pandemic times and may now be an option. Alternatively, try to look for a job that is lower in stress and demands since epileptic seizures can be affected by emotional stress and physical exhaustion. A flexible job that can accommodate doctors' appointments or temporary health issues are also preferable. Perhaps you might even look into a job in the healthcare industry (since they may have better understanding of seizures) and because it can be rewarding and a way of "giving back and maybe even helping someone from the epilepsy community. I can say that my experience working in health care was positive in many ways. Also, know your rights and take the time to familiarize yourself with the ADA (see below).
Please visit this website to find additional resources, information about training in schools, medication assistance and much more.
https://epilepsyservicesnj.org/
Please visit this website for additional information on work and resources for epilepsy:
https://www.epilepsy.com/living-epilepsy/independent-living/employment/finding-employment
Americans with Disabilities Act (ADA): https://www.ada.gov/pubs/adastatute08.htm
What is the Americans with Disabilities Act (commonly known as ADA)? The ADA was signed into law on July 26, 1990. The ADA grants civil rights protections to individuals with disabilities and prohibits discrimination on the basis of an individual's disability in employment in all 50 US states.
What do "work accommodations" mean?
The law states: "An employer must make reasonable accommodation for a known disability unless to do so would impose an undue burden on the employer." Each job and person are different, so the necessary accommodations and the nature of the job may require very unique accommodations. Some examples might be: 1) if someone is being evaluated as a surgical candidate, he/she may need workday adjustments for medical appointments and testing, 2) if the job requires driving, perhaps the job description can be modified to allow for work in the office, 3) if the individual is experiencing significant memory problems, he/she could request that instructions or directions are given in writing rather than orally.
If you feel that you have been mistreated because of your epilepsy and seizures, visit this link (Epilepsy Legal Defense Fund): https://www.epilepsy.com/living-epilepsy/legal-help
Our next issue will feature an article on the impact that epilepsy can have on the family. We hope to interview the family of an adult patient and the family of a child with epilepsy. Stay tuned.
