At 51, I was diagnosed with epilepsy. My first seizure caught me totally off guard. My day started off normally. Nothing was unusual. I was working from home and had a few meetings scheduled for the day. Sometime around noon, I was preparing my lunch. Time must have stood still at some point because I only remember my daughter asking me to go to the emergency room. At the time, I did not realize I had a medical emergency. It wasn’t until I saw a substantial amount of blood on the front of my shirt that I realized I had bitten my tongue during a seizure.
A few weeks went by, and then I had a second seizure. This time, I failed to stop at a red light. No injuries or fatalities resulted from the accident that day, but my life was forever changed.
Living with epilepsy has impacted me in so many ways. I have increased levels of anxiety because I never know when a seizure may happen. Epilepsy comes with many challenges, such as memory loss, dizziness, staring modes, and the inability to gather your thoughts, ideas, and words. Another challenge is finding a combination of medications that could help to decrease or eliminate the number of seizures a person experiences.
One of my biggest challenges is adequate care and support from family and friends. Having a disability has been difficult to accept as it is. Since epilepsy is one of those “unseen” disabilities, it is easy for people to dismiss your needs and the care that comes along with having epilepsy.
Along with the challenges we face, there are also plenty of stigmas associated with epilepsy. Some of those stigmas are people who have seizures are “having a fit,” seizures are not real, seizures are contagious, people can control their seizures, and epilepsy only affects children. None of these are true, and it is my priority to share accurate information about epilepsy and seizures.
Epilepsy awareness is critical. With more voices and people fighting for epilepsy, conversations can be had, and changes can be made that could lead to improvements in care and treatment. We need to spread the word to help address our challenges, eliminate stigmas, and get the support we need.