I've been seizure free for almost 7 years and I love this site. Just because your seizure free doesn't mean that we any less fearful than others. We all have our own fears. What helps my fears is to focus on others and try to help them.

Helping you helps me.

Something to think about is that controlled is a relative term. I call my seizures controlled... because they don't happen very often. But truthfully they are not I guess. The surgery I am going to have will maybe control them. But, even still, after the surgery there could be reprecussions. And I will still have to take medication. My point is that controlled doesn't mean symptom free. I'm not sure if such a group would be well used or visited, but I think there might be some niche there. I think with controlled epilepsy, like you've said Alison, we have more ability to advocate, so that might be where the niche is. And other concerns like guilt of not being very sick, but still being resentful of the condition....ect.

I agree with Mei01915 100%

@A MyEpilepsyTeam Member

Hi Jerome,

Your response gave me a great deal of clarity. Thank you! Advocacy is the real opportunity, as you say, not support. The question, then, is how to drive people to the site and participate. And what will the participation be like? The first is the more difficult question to answer. If you've any thoughts, I'm all ears. Again, thank you!!!

Best, Alison

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