Firstly, this is only meant to be from my experience and about living with Epilepsy. It is not meant to be a compare/contrast piece about physical and invisible disabilities. Everyone has their own experience and I can only speak from my own experience,
The challenging thing about living with epilepsy is that it can’t be seen on the body. Except for some bruises that I’ve gotten from falls due to the seizures, you can’t tell that I have a seizure disorder.
When I was a child, my epilepsy was not something I needed to share with people because my seizures were well controlled and I never had a seizure in public. Only my family and very close friends knew that I had epilepsy, but I could hide it and be seen as more than just “Sita with seizures”. As I’ve gotten older, I’ve needed to learn how to disclose, and tell people the appropriate first aid. It can be awkward to talk about, as seizures are not tangible and I’m scared with how to the other person will respond. On the other hand, I try to take the approach of being really calm and relaxed about having seizures, with hopes of the other person will feel relaxed as well.
I hate having an invisible disability because I can look like I’m doing well while in reality I can have a headache, and feel like I’m going to have a seizure because I’m feeling triggered by hot weather. The other thing about having epilepsy, is that it’s not obvious. For example I was waiting for the skytrain (like a subway), and I felt a lightning bolt go through my leg (not an actual lightning bolt). My leg started to shake and was rigid at the same time. I tried to stay calm and at the same time I managed to hop sideways to prevent myself from falling over, but to an onlooker this behaviour probably looked ridiculous. Most seizure activity to a person unfamiliar with seizures looks bizarre. This is frustrating because seizures can be mislabelled as “drunk behaviour” or being on illicit drugs. Also, since there are so many different types of seizures, people don’t always think to respond or they’re not sure how to help. Some of my seizures can look like anxious fiddling (clenched fist, tapping fist, rigid leg) so I can have a seizure and people won’t even notice. Although it is more obvious if I am standing or on a chair where the seizing causes me to slip out of it. Sometimes I just collapse, which causes people to assume I’ve had a heart attack or stroke. I am so thankful that my seizures are short.
Thankfully I have had people help me when I’ve been in tough times. Don’t get me wrong, there have been many people who have rushed to help me when I have been alone and had a seizure in public. One time when I was on a bus I was sitting on the aisle seat. I started to have a seizure and started to lean towards the aisle close to the woman who was in the row across from me. She didn’t know what was going on but she grabbed my shoulder and yelled to the driver “I think something’s happening here!” The seizure lasted only 15 seconds or so, but I thanked the woman for grabbing me. “I wasn’t sure what to do, I hope I didn’t hurt you!” The woman said. At that moment a hurt shoulder was the last thing on my mind. I was so grateful for the woman’s quick reflexes. Even though she had no idea what the hell was going on, she saved me from doing a nose dive into the aisle of the bus.
I feel like there’s also not enough public knowledge about epilepsy and seizures in general. This is partly why I started this blog. I wanted to get more information about epilepsy into the public, and if I could at least get more first aid information into the general public, I could feel more comfortable living as a person with epilepsy on a daily basis. Since my seizures are more frequent, I feel the label of being a person with epilepsy more so than I did when I was a kid. This is very difficult. I hope that having epilepsy doesn’t shut doors to different opportunities, due to stigma or misinformation about seizures. I am just going to continue on, as I would without this condition, and explain to people that having seizures isn’t a big deal. I just can’t let them stop me in my tracks, because I’ve done too much work to not keep going.