A lived experience • Stephanie Adams
When people picture epilepsy, they often picture the seizure itself. For me, some of the hardest parts can begin after that visible moment has finished.
My seizures do not always look how people expect epilepsy to look. I can collapse and become stiff without the dramatic shaking many people associate with a seizure. To someone watching, the important part may seem to be the moment I fall. For me, that is only one part of it.
Afterwards, I can be awake without really being back to myself. I can be confused, frightened, exhausted and unable to make sense of what has just happened. There can be gaps in my memory. I may not remember the seizure at all, and sometimes I do not remember parts of the recovery either.
Being awake is not always the same as being recovered.
One of the things I find hardest to explain is that my behaviour during recovery may not reflect what I am thinking or feeling normally. I can become agitated, defensive or distressed. In that moment I am not making calm, ordinary decisions. My brain is trying to find its way back.
The person beside me has learned that keeping me safe does not mean fighting with me or forcing me to understand. It can mean staying nearby, reducing danger, speaking simply, giving me space and waiting for me to become more like myself again.
There are other parts people rarely talk about as well. Sometimes I lose bladder control during a seizure. Afterwards there can be pain, embarrassment, tiredness and the practical job of dealing with what has happened. Those things may not appear in a short description of a seizure, but they are still part of living with epilepsy.
Then there is the exhaustion. A seizure may last a short time, but I can feel the effects for much longer. I may need to sleep. I can feel sore, foggy and drained. My memory can be poor. There are times when the people around me know more about what happened than I do because they saw the parts I cannot remember.
Why I wanted to share this
I created The Untold Side because epilepsy is bigger than the moment people see. There is the seizure, but there is also the recovery, the missing time, the fear, the practical mess, the person supporting you and the questions that can come afterwards.
I am sharing this first because I do not want to ask other people to tell me something personal while keeping my own experience hidden. My story is only one epilepsy story. It is not a template for anybody else’s. But if someone reads this and recognises even one part of themselves, then it has done what I hoped it would do.
Your story does not have to look like mine.
Every experience is different. If you would like to share yours, you can choose how you are credited, including anonymously.
This is a personal account of lived experience. It is not medical advice and does not describe every person’s experience of epilepsy.