Anna’s Story
During my first year of university, I suffered what I now know to be my first seizure. What I recall is not feeling well and worrying that I was going to pass out during one of my lectures, my vision was blurry, I felt dizzy, and started to experience a type of aura. I left my lecture and was calling for help, unfortunately, no one was able to hear me as words I thought I was saying were merely in my head. I woke up several minutes later, confused and scared. I was transported to the hospital where I was discharged with the attending physician assuming that I was a university student who was partying too much and not sleeping enough. It wasn’t until a year and a half after that I experienced my second seizure. At this time I was working as a summer camp counselor. I once again began to feel unwell and then suffered another seizure. I was again transported to the hospital where the emergency room doctor consulted with a neurologist and the rest is history. There are still some days I try to wrap my head around the fact that I have a chronic illness.
Epilepsy was a bit of an anomaly to me. While I had heard the term before, I never truly understood what it meant nor had I ever come across someone who actually had epilepsy. As much as my family tried to help me through this I felt like I did not have anyone that could relate to what I was feeling. This is why I am writing this article, I believe there is a lack of conversation about epilepsy, even though merely 300,000 individuals live with epilepsy in Canada. We need to raise awareness about epilepsy, share stories and experiences so those struggling can feel like they are not alone. By sharing this article, I hope that I am able to have this effect on someone.
Since epilepsy continues to be somewhat of a hidden disease, a lot of people do not understand the struggle of living with epilepsy. While I am fortunate that the physical part of being an epileptic, specifically the seizures, seems to be controlled with medication, there continues to be an emotional and mental toll on me. Due to this, I have also suffered panic attacks which are associated with my diagnosis. There exists a constant fear that is embedded in my mind--the worry that arises every time I have a headache or feel unwell that I may experience another seizure. I do encounter people who continue to minimize and dismiss my new reality. I feel this is primarily due to ignorance or lack of knowledge on the severity of epilepsy, especially due to these individuals not experiencing the physical aspect of my diagnosis, and not recognizing the emotional impact. The fear is at times unshakeable with thoughts that I am at the mercy of something I have no control over. Another aspect of having epilepsy pertains to the embarrassment I experience after suffering a seizure, which has occurred in public places. My second seizure took place in front of the kids I was working with at a summer camp, coworkers as well as my brother who was also a camp counselor.
I am fortunate to have an amazing support system, but I do still worry about my future and being a burden to my friends and family, who I know have their own concerns about my health. I know that many people who have epilepsy suffer differently than I do and there are varying degrees of severity, but there is one thing that I think is crucial for people to understand specifically that this is a disability that we, as epileptics will have to manage and endure for our entire life.
Epilepsy has also had a positive impact on my life. I now approach disabilities differently and am able to recognize that having epilepsy has enhanced my self-advocacy skills. While it was initially challenging to access the support I needed, I have now embraced both the personal and professional supports that are available to me. After being diagnosed with epilepsy it was extremely hard for me to find something that made me feel strong again. I was a competitive runner and swimmer for most of my life, I found strength from integrating these practices back into my daily life.
I am hoping that my self-advocacy skills can ultimately turn into public advocacy as it pertains to epilepsy awareness and the need for increased public awareness. Epileptics require ongoing recognition and support as well as increased funding to ensure the supports and research are in place to ensure we, as epileptics are able to live healthy and happy lives.
The courage of those living with epilepsy,
inspires us and fuels our journey.
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