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Please don’t be upset my fellow epilepsy warriors…
Purpose to engage in a community with other loved ones who love those who live with epilepsy. There are families, significant others, and friends who are having a second hand experience because of we that live with epilepsy. There is not enough support for them. They may not have epilepsy BUT they have a need for community and support too. ❤️ How helpful it would be for our loved ones to have a SAFE forum to ask questions or to talk about their… read more
@A MyEpilepsyTeam Member , If you go to the top of the main page & click where it says “Groups” & then scroll down to the very bottom & there’s a link to click on that says “Suggest A Group” & click on that & then it will take you to a page for you to fill out to request the type of group you would like to see started. Also, your local Epilepsy Foundation might offer support groups for both those with Epilepsy & caregivers & parents. You can look up your local Epilepsy Foundation at www.epilepsy.com. Hope this helps. Your friend in Texas, Becky
How can loved ones of people with epilepsy find support and community?
Your compassion for the people who support you is beautiful, and you're absolutely right that caregivers and loved ones need their own space for support too.
MyEpilepsyTeam already welcomes loved ones! The platform is designed for both people with epilepsy Show Full Answer
Teresa ., this be Jen .. I be loving wife of William .. we be much in support of the group you be suggesting .. here be our reason why ......
the loneliest and most fearful time for us spouses, partners, parents, children, family members, caregivers, and friends .. of dear ones suffering seizures ., in our experience .. be the postictal period ., whilst our dear one has finished seizing ., yet still remains within that twilight state of neither here nor there ., as we sit by their side ., gently holding their hand .. watching ., waiting ., and hoping for signs they be returning to us ., and in that nether world of waiting ., that be when our tears come ., we feel so helpless ., so hopeless ., so .. ALONE .. at that time of inbetween ., when are loved one breathes ., and their heart be beating ,, yet still absent from us they be .. and our own heart aches for ., solace?.. .peace?.. reassurance? .. hope.?.. a hug?.. a kind word?.. an answer to ... why?!
We have all been there .. we all know this feeling ., and we all appreciate a virtual shoulder to cry on ., of someone who also be walking in our shoes ., a safe place .. to share with others who care .. and know .. how .. ALONE .. we.. feel ., because they be feeling it too .. 💔😢😭 .. thank you Teresa for your excellent and much needed suggestion .. ., we hope this helps a bit.... William and Jen💔💜💙😮
@A MyEpilepsyTeam Member , It might take the people who run the site, time to look into setting up the group you requested. I know when I’ve reported inappropriate posts, it’s taken a few days or longer till they finally took care of it. Hopefully they’ll put one together for you. Take care. Your friend in Texas, Becky
Hola my fellow Texan, I did but no response yet. 🤪
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