As Vice-President, Business Development at Kinetic Construction, a Board Member, Vancouver Island Construction Association, Recipient of the “2014 Outstanding Woman in Construction”, Vancouver Regional Construction Association, and a Past Board Member, Headway, Victoria Epilepsy and Parkinson's Centre, and newly appointed to the BC Epilepsy Society Board of Directors, Katy refuses to be defined by her epilepsy. Welcome Katy Fairley.
How were you diagnosed?
I was diagnosed after a documented seizure the morning after my high school prom. I was 17. Documented just means it was seen by someone and I was lucky that my best friend was there and called an ambulance.
The ER doctor, to her credit, recognized immediately it was JME (juvenile myoclonic epilepsy) after talking with me, though more tests would be required. As she described the various symptoms of JME, I realized that I had been experiencing this form of epilepsy for years, probably since I was 14 years old.
I was leaving for university back east in 3 months. This was just one more thing I had to deal with and it was added to the laundry list of changes I was facing as I graduated. Looking back, it was a good distraction! My parents, somewhat surprisingly, let me work through it on my own. This was very helpful and I think allowed me to “grow up,” feel like an adult, and deal with adult issues.
On the Internet, I found a message board dedicated to various neurological disorders and a board dedicated specifically to epilepsy. I posted a few times but did far more reading. Through that site, I learned how many types and forms of epilepsy there are.
Have you had challenges with medication?
While I am no doctor, JME is a fairly benign and “easy to treat,” meaning it responds well and can be controlled by medication. There are numerous types of AED (anti-epilepsy drugs) and I have taken 3 of them so far. For me, the most disruptive aspect of having epilepsy has been the side effects that come with the medication. The first drug I took caused me to gain a great deal of weight and my hair to thin (just what you want when you are 18!). I was put on a second drug to mitigate those side effects.
Thankfully, I’ve been on a drug with little to no side effects for nearly two years. I am very grateful, not everyone who has epilepsy has that same experience with medication.
I have to be cognizant of my stress level and make sure I get the sleep I need. Both stress and lack of sleep are triggers for me.
Did you have concerns about telling your employer?
I had a seizure in March of 2014, the first in 11 years. I had not told anyone at Kinetic that I had epilepsy. I couldn’t drive for a few months – not until I was “cleared” by a neurologist. It was time to tell them. Kinetic was incredibly supportive and also gently curious; I was lucky in this regard. This gave me an opportunity to inform and educate, which is so crucial to changing people’s perspectives on epilepsy.
How do you challenge stigma or stereotypes?
I’ve had people comment upon learning I have it “but you are so well spoken!” This is always a bit of a head scratcher for me. Do they mean that people with epilepsy can’t be well spoken or that every “normal” person is?
It is important to talk about it because there is still a great deal of stigma surrounding epilepsy. It turned out others in my family had seizure disorders but it was not mentioned or talked about until after I ended up in the hospital. It was swept under the proverbial rug.
Additionally, I strongly and passionately dislike the term “epileptic.” I am not an epileptic: I have epilepsy. It does not define me, no more than my blonde hair does. I’m not a blonde: I have blonde hair!
Thank you Katy for sharing your story and inspiring others.