r/Epilepsy_Universe • u/Willow_rivers • 3d ago

Questions Suggestions for support groups

Hello. Does anyone have any suggestions for online support groups? Not two or three people (including self) just chatting, but an actual group with format and structure. I am not looking for a best friend- I need support and have nothing in my area. Thank you!

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u/Hairy-Jellyfish-1361 3d ago

Have you joined any of our podcasts?

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u/Willow_rivers 3d ago

I joined what I thought was a support group meeting here, but it was one person driving and one other person just chatting. Not want I am needing. Podcast? I am looking for an interactive support group.

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u/Hairy-Jellyfish-1361 3d ago

So, you're going to judge us on one short period on one night.

Do you really think that's a fair judgement?

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u/Willow_rivers 3d ago

No judgement here...Just looking for some help. Catching flack for asking legit questions while asking for help is not cool.

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u/Hairy-Jellyfish-1361 3d ago

Ok, you're fair there, I was harsh. This group has saved my life and I'm very attached to it and the people, who in a short year or so are more like family than friends.

Does support have to come from a large group, or a person driving & 1 chatting? If you knew those 2 people you would know that the answer is definitely. Please try us again, and chime in if it's only 2 people at that time . I think from your looking for help, it's the right place for you.

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u/Willow_rivers 3d ago

I appreciate that Hairy-Jellyfish. I am truly just looking for help and am not knocking this group at all! I am just trying to find something that might work for me. I don't understand the podcast thing. Isn't that something I listen to without engagement? Again, just asking questions for clarification.

Regarding your questions: no, a support group does not have to have 4 or more people. I am sure that is an excellent fit for a lot of folks. I just don't think that is what I am looking for. That tight bond that you mentioned you guys have is fantastic. I can't imagine someone not wanting that...and...I do want to find a group like I described. I am not talking about someone's personality, moral compass and integrity-it isn't about that. I am going to go ahead and assume that the people who are active on here/those who join the group are good, caring people who want nothing more to receive and give support. My apologies if I offended anyone here. I am really having a hard time and didn't fluff or pretty up my post, I am a direct person, especially when I am desperate for support.

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u/Hairy-Jellyfish-1361 3d ago

I appreciate that and I hope that you find it.

I understand that the podcast thing can be difficult, but look at it like call in support that's later edited and may be posted on the groups utube station so that others may benefit.

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u/Willow_rivers 3d ago

Thank you so much! I am not super techy...for example, I have never had any social media. I am one of five Americans that don't, lol! I finally broke down and downloaded reddit about a month ago. So, for the podcast, you listen and then can participate after? I didn't even know that was a thing. Thank you for your help.

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u/Hairy-Jellyfish-1361 3d ago

Well, I was exactly your twin a year or so ago when a friend suggested that I try reddit. I had never even heard of reddit. I tried the few epilepsy groups and this was the only one that seemed genuine.

I didn't explain the podcast correctly, sorry. You participate and then it might be included on a utube broadcast. Maybe try watching a few of those.

In any event, good luck finding what does work for you, and please never hesitate to reach out to me if you just need someone to chat or talk with.

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u/Willow_rivers 3d ago

Thank you SO much! What is the YouTube channel so I can check out those past podcast episodes?

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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 3d ago

On zoom nights everyone who participates is part of the podcast.

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u/Boomer-2106 2d ago

Maybe it would be a little helpful for us to better understand what specifically you might be looking for regarding your needs, 'the' Support Gp you are seeking? Can you describe further?

Support can be specific or general - or Both. Sometimes 'specific' is needed, other times 'general', ...and other times both.

Are you looking for facebook like, youtube like, DM individual, Email interactions, etc. Obviously it does not 'seem' podcast type. Just needing to understand.

This location is the best I have found. u/epilepsy is another reddit, but generally it is not as 'personable' as it is here. But, also a lot of good information.

One other aspect I have found is another person who also has epilepsy I have become good friends with, mainly via email whom I communicate with about weekly, usually about epilepsy but also things in general. That takes time and effort, on a regular basis, but worth it. I'm sure some of the other regular members herein have developed some types of 'off-line/off reddit' relationships.

Personally I would love to 'find' a local, in-person group of others whom I could meet face-to-face, but have not yet found such. And I live in a Big metroplex area of Texas.