Epilepsy,  Personal

7 Code Words Those With Epilepsy Understand

Epilepsy is its own challenge and also has its own language that only those with the condition can fully understand. And when youโ€™re in the midst of symptoms like brain fog or fatigue, sometimes being able to communicate in fewer words with those who โ€˜get itโ€™ 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 โ€œcode wordsโ€ or even hand gestures โ€“ part of a special โ€œlanguageโ€ โ€“ that helps communicate what is being experienced and better understand one another in the process.

Below are โ€œcode wordsโ€ that I say to help communicate what Iโ€™m feeling and need:

1. โ€œHowโ€™s the weather looking?โ€

This means if the weather is bad, it is likely the culprit of my increase in seizure activity.

2. โ€œIโ€™m fine.โ€

Sometimes, this means that โ€œI’m not fine, but I’m not ready to talk about it.โ€

3. โ€œIโ€™m all out of spoons.โ€

This means Iโ€™m lacking energy and need to rest.

4. โ€œMy battery is dead.โ€

This mean that Iโ€™m feeling very fatigued

5. โ€œLeave a message.โ€

This means that I donโ€™t really feel like talking and want time alone.

6. โ€œThe fog has rolled in.โ€

This means that brain fog has set in and I canโ€™t think of the word(s) I want to say.

7. โ€œMy brain is in mid-stormโ€

This means that I am experiencing a seizure or cluster of seizures.

Are there any โ€œcode wordsโ€ you and your friends with epilepsy use that you think should be added to the list? Post below!

Tiffany Kairos

I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

One Comment

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    Cindy Horsley

    I have petit mal seizures and they happen quite regularly and often I will stop mid sentence and wait until the seisure is over before I carry on with what I was saying or after someone has said something to me it takes me a while to comprehend what was said… my fiance and I have now nicknamed this “page re-loading”.

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