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I think I have brought this up before but I have accepted it and it does have its moments on occasion from time to time but I don't let it get to me and drag me down to that level,even though it tries to at that point in time, but over the years I learned how to deal with it and how to go about it overall, it' wasn't easy at first when I was diagnosed with and didn't know what I dealing with and it was a unknown territory for me In my life at 6 when I had it started to happen to me and didn'tโ€ฆ read more

March 30 (edited)
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Answer Summary

Members reflected deeply on how living with epilepsy has shaped who they are as people, with many agreeing that their lives would look very... Read more

Members reflected deeply on how living with epilepsy has shaped who they are as people, with many agreeing that their lives would look very different without the condition. Several members shared how epilepsy affected their independence, relationships, jobs, and medication side effects like bone loss and fatigue, while also noting the strength they found through faith and perseverance. A recurring theme was gratitude, as many credited their spiritual lives and community support as essential anchors that helped them keep moving forward despite the challenges.

A MyEpilepsyTeam Member

Yes my life would of been different, I'd be more confident without having epilepsy, plus how the anticonvulsant phenytoin has messed up my life due to side effects causing bone damage and loss of my teeth, one thing I say is the past can't be changed so don't dwell on it, I wouldn't of survived with out the Lord God's โœ๏ธ help ๐Ÿ™

April 1
A MyEpilepsyTeam Member

I praise God everyday day all day for just being alive--- I've lived way past what they thought I would--- I'M 50!!! ๐Ÿ˜‡๐Ÿ˜‡๐Ÿ˜‡
Epilepsy covers my whole brain, is not controlled and I have every type of seizures and status---
I'm stubborn, so I started young, making myself push on>>> Plus I only had nocturnal until I was 17, they've gotten progressively worse as I've aged>>> Hopefully this new study med will work and be approved---

March 30
A MyEpilepsyTeam Member

Definitely yes.
1) The big one ****My faith wouldn't be where it is, eventhough I still have my days***. I know I MUST rely on God to get me where I need to be, hopefully that's the same as where he wants me to be.
2) I wouldn't have had to be so reliant on medications that although they continue to control me, yet they turned my bones into glass (caused severe osteoporosis), sedation, depression, bone marrow suppression, the strain on kidney & liver, or had to have gums shaved every couple years due to gingival hyperplasia. imagine a kid on phenobarbitol for 10 years. 5-16 years old.

3) Then the issues of epilepsy itself because noone but myself knows whats happening in my head, it effects many relationships, jobs, sports, independence, etc. because the epilepsy isn't understood. I won't let it define me, as I want to be treated like anyone else.

****** Again, my faith wouldn't be where it is. Eventhough I think it sucks right now, I know others have it worse than I, and I have faith God has something better. I just wish He'd move a little faster.*******

March 30 (edited)
A MyEpilepsyTeam Member

I know I wouldnโ€™t be the same. But Iโ€™m ok with that. I like who I am- epilepsy and all

March 30
A MyEpilepsyTeam Member

Maybe not right now, but my life would have been different!

April 24

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