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Epilepsy and a Career as a Software Engineer: Making It Work

Man wearing suit and tie

Drew Haubrich has Epilepsy and a successful career as a software developer/engineer. He recently shared his story with AbilityLinks.

What was it like growing up with Epilepsy?

When I was younger there was a point in time where I could not get my mind off the struggles of my disease. I would have 10-12 seizures a month.

Those seizures would wipe away my entire recent memory, meaning the last 24 hours. Because of this, I would constantly wonder if I would ever get better each time a symptom or seizure would strike.

I had a Vagus Nerve Stimulation (VNS) implant, a device that sends regular, mild pulses of electrical energy to the brain to control seizures. It didn’t help at first, Mr. Haubrich said.

In high school, I had a surgery which reduced my seizures and made it to where I would remember what I did before a seizure rather than forget. Since I could remember what happened before a seizure I started studying and analyzing when I had them. I noticed I had seizures when:

1. I didn’t eat a meal 

2. I was physically tired or sleepy

3. I was dehydrated.

I would be working and if it would get a minute past noon, I would start to feel symptoms. If I ignored these symptoms, they would progress until finally a seizure would strike. This same thing would happen when working and ignoring that I was too hot or tired.

(We had a secretary with Epilepsy at our family business that we owned and she would get so dizzy to where she could not walk/stand.)

I never really got this dizzy. My symptoms would progress and get worse, but before I got too dizzy I would have a full seizure.

What happened when you were in your early 20's?

I finally said to myself around the age of 20, that I need to get my mind off my disease and start accepting that I will be living with it the rest of my life.

I went on through college working towards my degree. As I did this my doctor put me on new medication and with that my seizures stopped.

The VNS and meds are controlling my seizures today.

I think the fact that I got my mind off that stress and focused more on my degree vs not having seizures, may have played a key role in me becoming a seizure free person. I could be wrong in this.

Did you disclose your disability in college and what was your thought process?

When going through college I would go in and talk to the professors before signing up for a course and ask them how they did tests and class sessions. Depending on how they answered, I may have told them about my disability.

I also may have said, "Don't be surprised if I come in here and ask you to repeat something more than once." If they had a good reaction to this and agreed to work with me, I signed up for their course. This is how I went through college and graduated with a 3.0.

In college, I disclosed to about 1/3 of teachers. Some were accepting, supportive and some were not.

What are some of the ways Epilepsy affects the way you learn and work?

I learn things differently, a little slow, takes longer, got 3.0 in school, need someone that is willing to work with me. If they can accept me that way then I'm interested, if not then I'm not interested.

One of the side effects of having a VNS can be voice changes. Some VNS users experience a horse, softer voice when the stimulator is engaged, a time period that can last seconds.

What services did AbilityLinks provide?

AbilityLinks helped Mr. Haubrich with his resume , invited him to a networking group for IT professionals with disabilities, shared job leads,and gave him information about the pros and cons of disclosure of disability.

Many employers, especially federal contractors, have programs in place that invite applicants to voluntarily disclose disability, said Ken Skord, AbilityLinks program director.

The intent of these policies and programs is to measure and increase disability inclusion, added Mr. Skord.

Voluntary disclosure of disability can occur when making an application and during the job interview.

Explaining how you learn and work best or the reason your voice sounds different in the context of having a disability is taking a risk but it can help an employer more fully understand you and set you up for success in a job, Mr. Skord said.

Mr. Haubrich recently started working as a developer on a contract basis for a federal contractor in St. Louis. He decided to disclose having a disability during the application and interview process.