Undergraduate Epilepsy Student Conducting Research on How Epilepsy Affects Long-Term Employment Outcomes

[joycelin52104]

Hi everyone!

This is my first post here. My name is Joyce and I am a senior Statistics major at FSU. I am currently doing a class/personal research project on epilepsy, looking at how epilepsy affects long-term employment outcomes in individuals. It would mean a lot to me if you guys could fill out this survey--if it's not too much of a hassle.

I chose to do this project because I also have epilepsy (diagnosed three years ago at 18 and caused by grey matter heterotopia) and I aspire to become a Biostatistician in the future to help and give back to the epilepsy community! I have attached a link and overview of the survey below.

Link: (closed)

Overview: Epilepsy impacts all aspects of a person's life, including their ability to work. The purpose of this survey is to explore how epilepsy affects long-term employment outcomes in individuals. We believe that the results of this survey would provide meaningful insight into the challenges and barriers that individuals with epilepsy face in their work life, such as stigmatization and discrimination.

Thank you for reading! Have a nice day.

 

[Bernard]

Hi Joyce, welcome to CWE.

I have not looked at your survey as my wife has epilepsy and I do not, but I can tell you that some of the challenges to employment are not related to employer policy or work culture, but the effects of epilepsy/seizures and associated medications on cognitive performance that impair an applicants ability to perform well on job interviews. My wife has struggled with this greatly. Once hired, however, she does great and so far, knock on wood, most employers have been really supportive when or if a seizure issue has arisen in the work place.

 

[joycelin52104]

Hi Joyce, welcome to CWE.

I have not looked at your survey as my wife has epilepsy and I do not, but I can tell you that some of the challenges to employment are not related to employer policy or work culture, but the effects of epilepsy/seizures and associated medications on cognitive performance that impair an applicants ability to perform well on job interviews. My wife has struggled with this greatly. Once hired, however, she does great and so far, knock on wood, most employers have been really supportive when or if a seizure issue has arisen in the work place.

Hi Benard, thank you for the insight! I have also been struggling with the cognitive aspects/side effects of my medication, but in college (had to request an extension on assignments and be excused from class for neurology/doctor's appointments). Thankfully my college and professors have been super accomodating, and I will be graduating soon (in May)!

 

[Sabbo]

Hello. Even before looking at your survey, I will tell you that epilepsy has had a MAJOR impact on my (ability to) work life. The main reason of course, is transportation--I can't drive. I CHOSE not to when I was still in high school & only had simple partial seizures. I completed an Associate's Degree in Accounting & a BS in Economics but could never use them. My older son was born a few months after I completed my BS, and I began having VERY dangerous complex partial seizures soon after when I attempted to work. During one, I nearly fell onto the tracks at the commuter train station.

I KNOW stress/tension increase my seizures--even when I've taken all my meds. MOST of the AEDs cause short-term memory and "word loss" issues, where you know what you want/need to say, but your brain and mouth can't connect. I'll often have times when I can literally see what I'm trying to say in my mind, as though it's written on paper, but CAN'T say it.

 

[Bubble]

Hi everyone!

This is my first post here. My name is Joyce and I am a senior Statistics major at FSU. I am currently doing a class/personal research project on epilepsy, looking at how epilepsy affects long-term employment outcomes in individuals. It would mean a lot to me if you guys could fill out this survey--if it's not too much of a hassle.

I chose to do this project because I also have epilepsy (diagnosed three years ago at 18 and caused by grey matter heterotopia) and I aspire to become a Biostatistician in the future to help and give back to the epilepsy community! I have attached a link and overview of the survey below.

Link: https://redcap.fsu.edu/surveys/?s=33MD3EX4NRYLK49P

Overview: Epilepsy impacts all aspects of a person's life, including their ability to work. The purpose of this survey is to explore how epilepsy affects long-term employment outcomes in individuals. We believe that the results of this survey would provide meaningful insight into the challenges and barriers that individuals with epilepsy face in their work life, such as stigmatization and discrimination.

Thank you for reading! Have a nice day.

Thank you for putting in so much effort, I'm grateful people are putting awareness on it. I'm lucky to only have epilepsy when sleeping, so work itself hasn't been the issue. It's more about the medications side effects for me, for one the lack of concentration at times (depends a lot on how much I am invested in the task, so that's not just meds, it's just my brain), being tired and often falling back into depressive episodes. Those make it impossible to show up at work, even when I am motivated.

And the other thing is, that every time I apply for a new workplace, I have to explain myself, why I'm able to work, even though I'm short and got epilepsy. Many employers find it too risky, even when I say that my insurance will cover it. So that's the most frustrating and infuriating aspect for me.

 

[joycelin52104]

Thank you for putting in so much effort, I'm grateful people are putting awareness on it. I'm lucky to only have epilepsy when sleeping, so work itself hasn't been the issue. It's more about the medications side effects for me, for one the lack of concentration at times (depends a lot on how much I am invested in the task, so that's not just meds, it's just my brain), being tired and often falling back into depressive episodes. Those make it impossible to show up at work, even when I am motivated.

And the other thing is, that every time I apply for a new workplace, I have to explain myself, why I'm able to work, even though I'm short and got epilepsy. Many employers find it too risky, even when I say that my insurance will cover it. So that's the most frustrating and infuriating aspect for me.

Thank you so much for your insight, Bubble! From what I've been hearing so far, I might revise the survey to include cognitive impairments due to medication and mental health aspects. Personally, my medication (Lacosamide 200mg tablets twice per day) has made me super sleepy all the time and gives me double vision after I take it. I used to be on Keppra initially, but it didn't work to control my seizures and I experienced the infamous kepprage lol. My family, friends, and professors know that I have epilepsy, but I don't think they understand to extent to which it affects me and I don't think anyone except for you guys in the epilepsy forum truly understand how difficult and annoying it can be.

 

[joycelin52104]

Hi Joyce, welcome to CWE.

I have not looked at your survey as my wife has epilepsy and I do not, but I can tell you that some of the challenges to employment are not related to employer policy or work culture, but the effects of epilepsy/seizures and associated medications on cognitive performance that impair an applicants ability to perform well on job interviews. My wife has struggled with this greatly. Once hired, however, she does great and so far, knock on wood, most employers have been really supportive when or if a seizure issue has arisen in the work place.

Hi Bernard, I was possibly wondering if I could remove the survey link or edit my original post? I'm closing it! Thank you.

 

[Bernard]

I edited it for you.