Hi @A MyEpilepsyTeam Member I agree with everyone else unless you live with epilepsy the people around you (except family) don't want to be close to you. I had to give up my job but have never heard from anyone I worked with. The only people that are concerned are my wife, dad and cat. I have 3 sisters and never hear from them. I'm glad I have others on this forum so I am not alone. Lots of people take pity and I think lots of people don't know what to do when they see you have a seizure.

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A MyEpile...

I can totally relate to this, people either forget to include me thinking I’m different or act strange like their scared of what might happen. I started therapy for this and it’s helped a lot ! I’m praying for you :)
- California friend

hi stella pemeten here...ive honestly just read ur statement about pity/sorrow...im going to say this as bluntly as possible...i get really protective when i see an epileptic in full seizure & the thought is that that person is just really drunk or is really high...my partner has saved 71 people & 2 dogs from fentanyl poisoning they are thinking they are from a normal place when all they are now doing is fentanyl when they are praying its heroin they go into overdose & my hubby manages to have saved 71 people from that aweful drug... & 2 dogs amazingly...now with u there is no other way people know how to look at u & they want to know how to help when they cant do anything...i see another epileptic into full seizure all i can do is try to keep them from moving away & hitting their head...or keeping people away from them...thats what i hope i see.
The people around me when im in full grand mal but when im in complex partial i can tell when people are wanting to help but all they can do is put their hands over their mouth being in the (how can i be of help???) & they feel not worthy not being able to help...it makes them feel bad...so they cover mouth in stress not being able to touch or hold someone in full seizure...if ur having problems with this then maybe u should talk a little more about it...if im not correct i want to help & when i know its a seizure then i can help by saying...(DONT GO NEAR THEM ThEIR IN FULL EPILEPTIC SEIZURE) ur being helped by ambulance personal they are not feeling sorry for u they just want to get u to a hospital...now u put that question out again& ask for more help in direct answers in how they feel...

I hope this gives u some help...

Pemeten...
(Email address can only be seen by the question and answer creators)

Hi North,
What I do know is that there is no such thing as normal.
Repeat after me... NO SUCH THING AS NORMAL.
One thing I have learned is that you make your own version as you go.
And once I realised that, some challenges got easier to face, chin goes up a bit and working out what suits me best these days is what I'm into.

What you perceive to be pity and attention from others is maybe looming much larger in your own thoughts and perhaps it's possible they are just concerned and feel bad, wishing there was something they could do to help. Perhaps they are thinking how bloody brave and strong you are picking up and carrying on like the gutsy person you must be. By continuing on in your activities you could be helping them as much as you? Of course I don't know your situation, just putting it out there as a possibility.

My advice would be to NOT drop out of your activities. Try to find ways to be engaged and make sure to find ways to participate in things that you enjoy or try something new that you might enjoy. Have fun finding out!

What helped for me was to talk to my general practitioner and then I got access to a psychologist to help look at ways to change thoughts that are unhelpful that lead to unhelpful actions and habits. (like hiding away feeling like your life should be on hold-- I was there- it didn't help).
It is just so important to understand that your life is not on hold. We- all of us have challenges -people with or without epilepsy. You are worth the effort.
P.S
Your dog is just sooooo cute!
xo

It's not pity they just want to make sure you are ok. I know what you mean though. I felt the same way. After the surgery and seeing this little girl, she was about 5 have a seizure I wanted to help others like I helped her baby brother. You don't realize y well you've got it until you walk in someone else's shoes. If you need to talk I'm here. You can call or text me at (Phone number can only be seen by the question and answer creators).