Epilepsy Awareness - Tumblr Posts
HONESTLY
I have photosensitive epilepsy, and coming from personal, terrifying experience, it's an awful way to live.
I love Across the Spiderverse and Stranger Things. I enjoy rock and metal music and concerts, but these are things I, and many others, must either avoid or enjoy with EXTREME caution.
I get it, flashing lights can make an atmosphere more lively in a movie, or it can make a scene feel so tense and threatening in a show, but it really isn't necessary for someone to put into their blog. Really.
Photosensitive epileptics can't just walk the tightrope of life with caution, we risk our lives just turning on the TV, or in some cases, our phones.
For fucks sake, do better.
do people who disregard photosensitivity realize that seizures can fucking kill or do they just not care. do people not realize that their "aesthetic" "cool" flashing lights that happen without SUFFICIENT warning... are fucking capable of killing people. i dont even care if i sound pissy right now because i am pissy, im sick of feeling like myself and others with epilepsy arent even afforded the right to be an afterthought to most people. im not even photosensitive but ffs this shit makes me so angry.
seizures themselves can be deadly if they go on too long, theyre essentially electrical overloads in the brain, you know, that organ that controls the entire rest of the body? and seizures can result in injuries or death from falls. from choking on our own vomit. from drowning in our own bathtubs, if we think we might be safe to bathe and then get proven wrong. maybe someone just wanted to watch a video or movie while they took a spa day.
did you know that epileptics are more likely to die younger than those without epilepsy, with all those risks and more? and have you heard of SUDEP? sudden unexpected death in epilepsy, death without a known cause, a rare but very real possibility for us. it kills approximately 1 in 1000 epileptics a year, if not more since it may not be accurately tracked. thats thousands of us dead a year. we do not need you to add to our death rates.
"all these things are known risks, epileptics just have to be more careful-" epileptic people should not have to be on constant fucking high alert. how about instead, people just learn to give a shit about life threatening disabilities? it takes so little effort to just offer a CLEAR and VERY OBVIOUS warning AHEAD OF TIME, for a SIGNIFICANT AMOUNT OF TIME, before your stupid flashing lights. or just dont add them at all. are they necessary? are they really necessary? would you really fucking rather photosensitive epileptics have to be constantly on guard, IMPOSSIBLY on guard, rather than you just considering their safety? nobody can anticipate every instance of unexpected flashing lights they might come across. but you, creators, are able to provide warnings, and if for any reason you arent, then hire someone else to edit the warnings in or just get rid of the fucking lights altogether.
again, my epilepsy is not photosensitive, but i will never stop being protective of my photosensitive siblings. my own life is scary enough with the form of epilepsy i have, i cannot imagine how terrifying it must be to have to maneuver through the world with photosensitivity, and i dont want careless assholes to go killing my fucking community because you dont give enough of a shit to worry epileptic people. i am pissed off and emotionally exhausted and the shit with elon musk having a flashing gif on his twitter account was the straw that broke my back today so youre getting a pissed off PSA. everyone better start doing a whole damn lot better.
link to the CDC page about SUDEP
link to the epilepsy foundation site page about seizure risks
people without epilepsy are encouraged to reblog but know that i am already angry and will not tolerate bullshit on this post. give a fuck about other peoples lives and safety or im blocking you.
Happy Disability Pride and awareness month! Let's talk about Epilepsy!
Hi there! I got tired of seeing my condition (that impacts my literal every day life) being left out or forgotten about during discussions about disabilities, so I made my own post about it! Let's go!
First Off! What the heck is epilepsy? Epilepsy is the fourth most common neurological disorder in the world, and it's a chronic medical condition. Epilepsy is a brain disorder that causes recurring, frequent, triggered, and unprovoked seizures to occur.
The official Epilepsy Foundation describes seizures as follows: "Seizures are sudden surges of abnormal and excessive electrical activity in your brain, and can affect how you appear or act. Where and how the seizure presents itself can have profound effects...Seizures involve sudden, temporary, bursts of electrical activity in the brain that change or disrupt the way messages are sent between brain cells. These electrical bursts can cause involuntary changes in body movement or function, sensation, behavior or awareness." (Source link)
Sounds like a lot of fun right? This is our life. Even with medication, we can be VERY limited to what can be safe for us. Seizure medications are NOT a cure, they only exist (at least as of now) as a tool to help have your seizures less often, or be triggered less intensely. Even on medication, seizures can still happen.
If you have epilepsy as a child like I did, it impacts your entire growing and developing experience. I spent MANY times as a child in and out of hospitals, neurologist and specialist offices, an getting so many EEG tests done. The pain of scrubbing the glue out of your hair for DAYS is horrible.
At a young age my seizures were so frequent and serious, it impacted my brain's ability to retain information. I had to re-learn the names of things at age 8 and 9. I had to re-learn HOW TO READ at age 10. I had to be home schooled because the public school system of my state at the time refused to work with me. I have VERY distinct and vivid memories of crying over my little baby ABC's book that I needed as a 4th and 5th grader. I knew I should've known this by this age. I knew that at one point I already did, and it was TAKEN FROM ME.
As an adult, I'M NOT ALLOWED TO DRIVE A CAR. And I can NEVER go to see a movie in theaters or go to see concerts or live music. There are entire TV shows I don't get to see. I can't go to clubs, arcades, dances, or raves. I miss out on A LOT of fun things. I always do, and I'm WELL AWARE of the fun I'm missing out on. The social, casual, and fun life experiences I'll never get to have. That WE'LL never get to have. And oh yeah! Seizures can KILL SOME OF US. Yep.
And the list goes on, and every person with epilepsy experiences it differently. There are multiple different types of seizures you can have, they're NOT always convulsing on the floor. For example, I have complex-partial-myoclonic-seizures. Meaning my muscles DO twitch when I have seizures, but I'm not always completely unconscious and sometimes I'm even able to stay sitting up. However, I'm still very "off" and can't focus or remember much for a good while after the fact. I can't talk or communicate during one, even with my slight bit of consciousness.
My experiences are not universal, I just wanted to talk about it and bring it up. It helps to talk about it even a little bit. Here's more about different kinds of seizures. Here's more about common seizure triggers. Here's more about CORRECT seizure first aid. And here's more general information/resources.
Please stop leaving us out of disability awareness. Please stop ignoring us or saying we're "not really disabled" or anything else like that. Please. Why does it always feel like the only people who care about epilepsy, are people WITH epilepsy? We're so tired of being ignored by others who don't have our condition.
If you're an epileptic person reading this, I see you. I love you. You're so strong, we all are. I believe in you, I believe in us. We're so much stronger than we get credit for, and it's going to be ok. Your anger and frustration are valid. Your emotions and struggles are real. You're valid, and I see you. Hang in there, we got this.