By Amber Kaiser

Since working with Neureka, for the first time ever in my career, I felt comfortable to start posting and following epilepsy news on LinkedIn beginning just last year. I’m so glad I made this personal transition because I’ve also had the opportunity to virtually meet many other people who live with epilepsy!

Recently, I reached out to Jessica Chappell after noticing her epilepsy advocacy. She posts really helpful and relatable information and I was so excited to finally meet and connect with her! I can tell raising epilepsy awareness is something she’s naturally very passionate about and I’m so happy for her that she is in a position of power, advocating for others with epilepsy and creating epilepsy campaigns in her work now. 

Jessica shares her personal story with epilepsy and how she has been able to safely bring it into her workplace and create some really awesome advocacy projects and programs working at corporate in the pharmacy retailer field. Like the story goes for most people, it didn’t come easy, but it sounds like she is now in the place she was meant to be!

Being diagnosed and living with epilepsy is a life-changing experience

I had my first seizure when I was 10 years old, and at the time, it was thought to be a one-time thing from a high fever. Then I had another seizure when I was 12 and was diagnosed with epilepsy. It was really a life changing experience and especially not easy as a kid with the disease.

My whole world flipped overnight—I couldn’t do a lot of the normal things like going to sleepovers, riding roller coasters and swimming without supervision. Going into the summer of my 8^th grade year, I was really bummed thinking things like “why me.” You’re still young and it’s tough to wrap your head around being diagnosed. There wasn’t a physical reason, the doctors didn’t see anything in the MRIs and other testing I had done. The best the neurologist could do was say maybe it was related to hormones and puberty, and my family and I just accepted it for what it was.

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We had trouble finding epilepsy support

We didn’t find any local organizations or places to help people with epilepsy (even on Google in those days!) and there just weren’t any places to get information back then. For many years, the first AED prescription medication I tried actually worked—Trileptal—which was brand new at the time. And then about every 2 years I was having a seizure with no reason why. I was never officially diagnosed with a certain type of epilepsy because they couldn’t capture my seizure activity at the hospital.

Driving and college with epilepsy

I had a seizure just 4 months before I could get my driver’s permit—it was devastating for me. In the state of Pennsylvania, at the time you had to be seizure-free for 6 months in order to get your license. It was definitely a difficult time. Later, when I went off to college, things were better in the beginning with taking my medicine and managing my sleep. Then some things happened in my family and I had 2 seizures in a row during college. I just increased my seizure medications as my doctor at the time recommended and kept going.

Managing epilepsy while working

I started working at a pharmacy retailer when I was 18 and stayed throughout college. After college I was asked if I wanted to be an assistant manager and I was going through AED medication adjustments (which have lots of side-effects) so I had to get a doctor’s note for safety reasons to bring to the store manager. I couldn’t work overnight for my health and safety reasons. The manager at the time was difficult to work with and said I was never going to be a store manager if I couldn’t do floor waxing (which is done at night while there are less people in the store or the store is closed). I wanted to prove him wrong—I was 21 at the time—but it was tough because he treated me like an inconvenience since I had epilepsy. That was the beginning of the end for me of wanting to stay where I was in Pittsburgh—and why I moved to Chicago, eventually became a store manager, and made it up to the corporate office. I wanted to be a voice and try to make change.

Giving a voice to people with epilepsy in the workplace

Once I moved to corporate, I told this story to the team and they were appalled. I knew we had to make a change. My first year I didn’t talk a lot about epilepsy and just felt comfortable sharing it with my boss, but the next year I learned about our Employee Resource Group (a Disability Alliance group). Someone referred me to the chair in 2019 and he was looking for people to talk with about their journey with their disability or disease. I wasn’t sure what to expect, but I talked to him and it was like a fire was lit inside me—I shared my story and naturally became a leader in the process.

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He provided me with a platform to help other people and I had my first epilepsy awareness event at the pharmacy stores. I went around talking to people who worked with us and who also lived with epilepsy in some way—whether it was themselves or a family member. We had a big event sharing each other’s stories! I also talked with someone who was a pharmacist by trade and asked if they knew what to do if someone had a seizure and they didn’t know. 

That’s when the other lightbulb went off for me! People don’t know what to do when someone has a seizure—so he suggested putting seizure first aid posters around the office. I went around putting up posters in the office and they kept them up. Every year since then there’s been an epilepsy awareness event at the corporate office. My dream was to see our company focus on epilepsy patients who visit our pharmacies (they already have a focus on MS). After the pandemic, we expanded neurology beyond MS to include epilepsy and seizure disorders! These diseases are focused on all year long in our specialty pharmacies!

Over the years, I have watched the company transform to focus more and more on disability inclusion and it’s the first time where executives are openly acknowledging people with disabilities and how valuable they are in the workplace. Team members with disabilities feel safer now and have a deep sense of community.

Advice for people with epilepsy looking for a job

Each of our situations is different, but don’t ever be afraid to advocate for yourself. Be confident in who you are. I wish I had been more vocal about ways I was treated in the workplace with my epilepsy in the beginning and there have been times in the past where there were requirements. I wish I would have advocated for myself more so that’s my biggest piece of advice.

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Fun times and helping others with epilepsy

I love watching movies, listening to music and reading books. I’m a gamer as well and play lots of different games. I’m also a step mom and both of my bonus kids are teenagers. I’m blessed, but it certainly can be challenging!

I also love volunteering with the Epilepsy Foundation, teaching people seizure first aid, advocating and sharing my story.

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Learning to be your own health advocate

When I moved to Chicago, I learned there are 4 major health systems here, two of which are Comprehensive Epilepsy Centers. For whatever reason, I decided I was going to see a neurologist who was not a part of those two,  and ended up going through a really terrible experience with 2 epileptologists—they were condescending to me about certain aspects of my life, making me feel bad and I only saw them once a year to get my prescription. It was clearly not the right fit for me. 

Then when the pandemic hit that was really stressful for people with epilepsy. I got really sick and never heard back from my doctor! I really had to advocate for myself and made it a point that I really needed to see a good doctor finally. I made a promise to myself to make sure I had the right doctor and asked good questions and made sure that they were respectful of me.

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So I found a new doctor and he said no epileptologist I had seen so far had given me the right answers about my epilepsy. He said he was going to help me learn what type of epilepsy I have and work together with me to create a new plan of action. He made recommendations and explained the why behind them. He further explained the science of what he felt was happening to me and reassured me that before long I would have answers. I wanted to cry–I had never felt more cared for in my life by a doctor. So don’t be afraid to break up with your doctor! It doesn’t matter how many times you’ve seen them—everyone deserves to be treated with respect.

Watching your seizure triggers

My two biggest common seizure triggers are sleep deprivation and stress so I manage those as best I can. I also recommend to everyone with epilepsy to get a therapist. My therapist has been so important and helps me keep my stress down—they taught me mindfulness and I highly recommend that. Playing games also helps me relax and focus on something fun. My therapist is like the pillar of my life. You have to manage your life around your triggers.

Finding your support system

My biggest support system has been my parents. They’ve been my rocks through the whole journey, my biggest advocates with all the doctors, and my mom kept meticulous notes from my appointments and wasn’t afraid to ask the tough questions. My brother was actually also a trained paramedic and he was there during a lot of my early seizures.

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When I moved to Chicago, I actually met my husband in just 6 months and he’s a police officer. He’s amazing—he knows what to do, stays calm and knows how to get me help when I need it. I’m surrounded with a good support system and very lucky to have that.

If you don’t have the support that you need, my #1 recommendation is to contact the Epilepsy Foundation and connect with your local chapter. They have epilepsy support groups in almost every state now. And they have resources and support for the person with epilepsy, caretaker and other family members. There are also online classes and free epilepsy safety training available.

My biggest mission is making sure no one feels alone. I didn’t know anyone else with epilepsy for many years, and the epilepsy journey usually doesn’t suddenly end—it peaks and valleys throughout life.

Connect with Jessica

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