Today, February 12, 2024, is international epilepsy awareness day. Because of that, I want to share my story of having epilepsy for nearly 10 years. I'll start with this...
It's hard. The last almost 10 years has been a pain in the ass. It has been seemingly nonstop tests, neverending failing medication trials, and feeling ashamed and embarrassed. Becoming an advocate took several years. I am lucky in the sense of having a great support system through family and friends, many of whom I would have never met had I not been diagnosed.
The stigma attached with epilepsy makes it so much harder to have a somewhat normal life. While there are some positive things that I learned at a relatively young age, the cons outweigh the pros by a lot. It's hard to lose "friends" at the age of 13 because of something you can't control. (I was 13... I thought we were real friends.)
Here are some of the positive things I try to remind myself that I would not have learned without going through the pits of hell and being seemingly stuck there...
There are so many more problems though...
You lose a lot when you have seizures. You lose relationships that you find important, many people lose happiness and tranquility, and perhaps most bothersome to people, especially adults, you lose freedom if your seizures aren't controlled by any of the countless methods of seizure control. About 1/3 of people have this issue of intractable epilepsy, where they have tried at least two medications with no success. Failure of medications includes side effects so severe the medication cannot be used, it stops working, or it doesn't completely control the seizures.
I have had two of those things happen. The first medication I was on made it so I was seizure free for nearly five months BUT if a medication causes you to feel suicidal, it isn't worth using that one. I was so depressed that I didn't want to be alive. I didn't try to do anything (while I was on that one) but I couldn't stop thinking, "It would be so much easier for everyone if I was dead." When my doctor was told, she started weaning me off that medication. I thought the side effects were fine because I wasn't having seizures on it. I thought the feelings were normal. (We're all dumb as teenagers... If you say you weren't, I'll immediately accuse you of lying.) I have never had a medication control my seizures since that one. The second one they tried actually made it so I predicted them within a three day period and I was always accurate.
There have been many times where I get embarrassed about them. Sometimes it's the seizures but other times it's the side effects. My short-term memory is shot from the third medication I was put on. I can meet someone and in under a minute, I forget their name and sometimes even what they look like. One medicine was such a a high dose trying to gain control that I went to school, in high school, walking like I was drunk. For a while, the nurse would come out with a wheelchair and brought me to her office every morning before everyone got off the bus. It's humiliating to experience that, especially when you're 14.
It took a couple of years (probably about 1-2) of attending support group, learning about seizures, and meeting people who truly understand my situation to even be open with people about having seizures. It took even longer to start to be an advocate. I believe it was about 4 years. At that point I began to volunteer for the same organization that helped me come to terms with it and meet people who truly understood what I am dealing with. Giving back to them helps both them and myself. Epilepsy worsens depression and anxiety, helping them helps my depression. It gives me a sense of purpose unlike anything else.
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