Epilepsy is its own challenge and also has its own language that only those with the condition can fully understand. And when you’re in the midst of symptoms like brain fog or fatigue, sometimes being able to communicate in fewer words with those who ‘get it’ can be extremely helpful. Of course, who can understand and empathize better than those who may sometimes feel so foggy the word itself is lost in the fog?
Many of those with epilepsy may use certain “code words” or even hand gestures – part of a special “language” – that helps communicate what is being experienced and better understand one another in the process.
Below are “code words” that I say to help communicate what I’m feeling and need:
1. “How’s the weather looking?”
This means if the weather is bad, it is likely the culprit of my increase in seizure activity.
2. “I’m fine.”
Sometimes, this means that “I’m not fine, but I’m not ready to talk about it.”
3. “I’m all out of spoons.”
This means I’m lacking energy and need to rest.
4. “My battery is dead.”
This mean that I’m feeling very fatigued
5. “Leave a message.”
This means that I don’t really feel like talking and want time alone.
6. “The fog has rolled in.”
This means that brain fog has set in and I can’t think of the word(s) I want to say.
7. “My brain is in mid-storm”
This means that I am experiencing a seizure or cluster of seizures.
Are there any “code words” you and your friends with epilepsy use that you think should be added to the list? Post below!