Words matter when you are feeling isolated and annoyed

We have been talking about words on Facebook this week. More specifically, what is that one word that you would use to describe how having epilepsy makes you feel.

I was feeling a few words this week and none of them were of the positive variety. Mainly because I found out another friend, who has been struggling to regain control of her seizures, will go in for a second brain surgery. Honestly, I am tired of hearing stories of how these amazing men and women are having their creative genius stolen from them by epilepsy. It is simply not enough to feel lucky to be alive.

Needless to say, my words were not super positive this week.

Your Words

I wanted to find a way to channel that energy. So, I put out a challenge on Living Well With Epilepsy’s facebook page as a poll.

Challenge: use one word to describe how having epilepsy makes you feel

I got things rolling with a few selections, but participants had the option to add their own word. It brightened my mood when the first response came back within minutes. Sometimes it’s just nice to know I’m not just whistling into the wind.

Some Shared

Within 24 hours the poll had been viewed by more than 700 people and had more than 30 votes. The top responses were Isolated and Annoyed. I have to say right now I feel a whole lot less Isolated, and even somewhat less Annoyed.

Now it’s your turn

If you haven’t answered the poll please take a minute to share your one word.

Thanks again guys. Your words helped.

Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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