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Epilepsy - Blog Posts
Having a serious disease is just like:
"Oh, that's just an illness and I don't need to feel guilty because of it, because I can't control it"
And then:
"FUCK, HOW MUCH I HATE MYSELF, I CAN'T DO BASIC THINGS, I'M ALWAYS ISOLATED, MY DISEASE JUST BECAME A MEME, WHY DO I HAVE IT??? JUST WHY?? IS THAT I DESERVE??? WHY I SHOULD I LOVE MYSELF WHILE EVERY FUCKING SECOND I'M WASTING AWAY??!"
People who have any physical issues, I've created a discord server for you all! Hope that you'll have fun!
https://discord.com/invite/MgU9nvnK
People with physical health issues, what do you think about making a group of us, to support each other? We could also make some representation to spread awareness about our illnesses! Just tell me where you'll be comfortable to chat! And also, there's no matter which diagnosis you have, because we'll represent every physical health issues!
why does nobody represent physical illnesses?? I mean... Most people don't know what cerebral paralysis, epilepsy, etc are, and in the end laughing at it, or saying stupid and disrespectful things about it. I think we should spread awareness about physical illnesses, because they're hard to deal with alone, and also could lead to a mental illness. Please, someone, spread awareness about physical health...
I wish there was a law against strobe bike lights. Last night i literally had a seizure because my boyfriends roommate got home when I was outside, and suddenly the yard was strobing.
Like okaay, TV rules were changed cuz of that one episode of pokemon that gave kids seizures right? So how come its chill that people can ride around through town with strobe lights attached to their bikes? What if a kid is in a car behind you and has a seizure? What if someone is walking down the street and suddenly your bile is the reason they are in the back of an ambulance?
As someone with photosensitive epilepsy, I've been taught my whole life to avoid the flashing triggers. When things are flashy online youre told to just avoid the internet, when stores have bad lights dont shop there, no clubbing or parties because there will be strobes. It feels so unfair that even when we go out of our way to avoid seizure triggers, people still will find a way to make your world smaller and smaller.
Even on a not epilepsy note, they are literally more unsafe for bikers because the strobing light makes it harder for night drivers to tell how fast and where exactly you are than a non blinking light......
Please stop trigger tagging with #epilepsy tw/cw/warning/etc.
I need every single person to understand how horrible tumblr’s tagging system is
I go into the tag for epilepsy and its all flashing lights. We can’t use our own tag because people without epilepsy fill it up with improper warnings.
Use ‘flashing’ in place of ‘epilepsy’ in your tags. You aren’t warning people of epileptics, you’re warning us of flashing lights. Please please tag properly. Epileptics say this endlessly and constantly and it’s ignored. You are risking lives by doing this.
Here’s proof of what I mean:
THIS POST IS 100% OKAY TO REBLOG, I ENCOURAGE PEOPLE WITHOUT EPILEPSY TO ESPECIALLY DO SO!
Please stop trigger tagging with #epilepsy tw/cw/warning/etc.
I need every single person to understand how horrible tumblr’s tagging system is
I go into the tag for epilepsy and its all flashing lights. We can’t use our own tag because people without epilepsy fill it up with improper warnings.
Use ‘flashing’ in place of ‘epilepsy’ in your tags. You aren’t warning people of epileptics, you’re warning us of flashing lights. Please please tag properly. Epileptics say this endlessly and constantly and it’s ignored. You are risking lives by doing this.
Here’s proof of what I mean:
THIS POST IS 100% OKAY TO REBLOG, I ENCOURAGE PEOPLE WITHOUT EPILEPSY TO ESPECIALLY DO SO!
i was referred to as an epileptic by a doctor for the first time yesterday. even after having the tonic-clonic seizure in february and my eeg showing epileptiform discharges, the most my neurologist will say is that i *may* have a “tendency towards epileptic seizures”. he won’t say i have epilepsy. he had been blowing me off for a year, saying my focal seizures were probably “near syncope”, or a “weird migraine”. it’s finally gotten to the point where he can’t dispute my epilepsy anymore, but he still finds a way to phrase in such a way where he doesn’t have to admit he was negligent. i told my new rheumatologist about my history with seizures, and she looked over my eeg. she said i should be medicated for epilepsy. but my neurologist will not put me on medication until i have another tonic-clonic seizure, and unfortunately it’s not really her decision. i told her that my neurologist said that eeg’s can show epileptiform discharges in 1% of the non epileptic population. she laughed and said “you’re epileptic, sweetheart”. it was such a throw away statement for her, but it meant so much to me. this is one of the first times my seizures have been taken seriously. i think things r finally looking up
If you see it, reblog it.
PSA for Star Wars fans:
PLEASE SPREAD THE WORD ON THIS!!!!