Writing a character with epilepsy.
Before starting: if you want to write representation of any sort, go for it! Don't let your fear of getting something wrong stop you. Just read about what/who you are representing and hire sensitivity readers (preferably more than one!) or ask epileptic people for help. But everyone agrees that rep is nice, so really, just ask any available sensitivity reader and you'll be answered.
(For any questions, I'm available as a sensitivity reader for generalized epilepsy.)
I can't speak for every epileptic person out there as everyone has a different medical history, so if you have anything to add please do so in the comments!
I'm writing this because 1) again, representation is always nice and 2) I've read about dozens of fictional characters consistently getting head injuries during fights or action scenes without suffering any consequences. Like, c'mon.
(English is my third language; I'm sorry in advance for eventual bad grammar.)
A little bit of science
Epilepsy is a chronic condition caused by irregular electrical activity in the brain, which leads to seizures. It can develop at any age and can have many different causes (head injury, tumors, genetics, brain infections, strokes). Sometimes, the cause is unknown.
Seizures can be either focal (they start in one specific part of the brain) or generalized (the seizure involves both parts of the brain). Focal seizures can spread to the whole brain and become generalized.
There are many different types of seizures, going from small jerks or absences to tonic clonics (the ones where you fall unconscious and have convulsions; they're the ones that media portrays the most).
Some people also experience auras (whose symptoms include dizziness, hallucinations, fear, numbness or tingling sensations, nausea, lightheadedness, feelings of déjà vu and impending doom), aka seizures that indicate a bigger seizure is about to happen.
I won't go in depth about all the medical details, as you can find them everywhere on the internet. You can start reading about it by following this link: https://www.healthline.com/health/types-of-seizures
What I'm going to talk about is idiopathic generalized epilepsy with absences and tonic clonic seizures without auras, as that's my experience and therefore the one I can write about more accurately. In this post I'm going to focus on the daily details that make the character feel more relatable and authentic.
What do absences look and feel like?
From the outside:
When someone has an absence seizure, they suddenly stop all activity and stares into space with a blank look; from the outside, it might look like they're zoning out. If they're talking, they shut up (or, if the absence is short, the voice momentarily fades into a low murmur); if they're walking/running, they stop and stand still. If someone calls them during an absence, they're going to be unresponsive, as people are unconscious during absence seizures.
From the affected person's point of view:
I notice I've had an absence because I feel confused afterwards and forget what was happening before the seizure started, so it takes me some seconds to remember what was/is going on. Sometimes, this state of confusion lasts more than the seizure itself. Depending on the situation, the brain can feel extremely relaxed right afterwards, almost as if waking up from a dream, or very hazy.
However, some people don't notice they had an absence, and just resume doing what they were doing before they got interrupted.
Absences can last from 1 to 30 seconds, but they usually last less than 10-15 seconds. Mine last 1-2 seconds (I'm very lucky). Undepending of how much they last, however, driving is still off the table, as absences still involve a loss of consciousness.
Absences can be typical (the most common ones; they tend to be shorter, the seizure is abrupt– sometimes, the eyes might turn upwards and the eyelids may start fluttering) or atypical (they usually last a little longer than the typical ones and there are more movements involved, like smacking your lips, swallowing down, chewing, making hand motions).
What do tonic clonic seizures look and feel like?
From the outside:
Tonic clonics (also known as grand mals) can be divided in three phases, which the Hopkins medicine website offers a good description for:
TONIC phase:
When the tonic-clonic seizure begins, the person loses consciousness and may fall. Strong tonic spasms of the muscles can force air out of the lungs, resulting in a cry or moan, even though the person is not aware of their surroundings. There may be saliva or foam coming from the mouth. If the person inadvertently bites their tongue or cheek, blood may be visible in the saliva. Stiffness of the chest muscles may impair breathing, the person’s face may look bluish or gray, and he or she may make gasping or gurgling sounds.
CLONIC phase:
Jerking movements affect the face, arms and legs, becoming intense and rapid. After one to three minutes, the jerking movements slow down and the body relaxes, sometimes including the bowel or bladder. The person may let out a deep sigh and return to more normal breathing.
POST ICTAL phase
After a seizure, the person may remain unconscious for several minutes as the brain recovers from the seizure activity. He or she may appear to be sleeping or snoring. Gradually the person regains awareness and may feel confused, exhausted, physically sore, sad or embarrassed for a few hours. The person may not remember having a seizure, and may have other memory loss. Occasionally, people may have abnormal or combative behavior after a tonic-clonic seizure while the brain is recovering.
TCs usually last from 1 to 3 minutes– if they last more than 5 minutes, you, as a bystander and whitness, should call an ambulance.
From the affected person's point of view:
During the time they're having a TC seizure, people are unconscious– once they regain consciousness, they find themselves in a very, VERY confused state of mind (and I can't stress this enough), and might exibit sore muscles and bruises (plus eventual pain in the bodyparts that hit solid objects/surfaces).
About the 'confused state of mind' part, I'm just gonna leave you a first hand example:
After my first TC, the nurse asked me what my name was. My thoughts went something like this: "Sure, I remember my name. It's... wait, what's my name? How come I don't remember my name??", followed by moments of panicking and me digging into my memory while still brain-fogged. After some deep effort (the same effort that takes me to solve exercises during my algebra uni exams, if not more), I finally remembered my name.
... In the meantime, I muttered gibberish before getting the answer right.
During the post ictal phase, you understand what people are asking you, and you even might know the answer, but your thoughts and your mouth seem disconnected. Which means, if they ask you what the capital of Italy is and you know the answer is "Rome", when you're going to try saying "Rome" what actually comes out is "Mmmgggjjhhh... London?"
You think you aced it, but turns out you didn't.
When I tried to speak, I realized I had bitten my tongue, which made talking a little difficult. After some minutes, while trying to stand up, I sometimes felt soreness in my muscles, as a result of the tonic phase and some slight pain where I had hit a hard surface.
After the following TCs I didn't panic anymore when regaining consciousness, because at some point you kind of get used to the feeling. However, note that this also depends on the individual.
How long does it take to recover from a tonic clonic?
... It depends. For some people, it takes a couple of hours before being lucid and clear headed again– for others, days or weeks.
About seizure triggers:
It's not only about flashing and/or strobing lights!! That's a big misconception. (And even when light is the trigger, we're not necessarily talking about club-like flashing lights– it could be light filtering through the trees, for example! Or the shimmers of light on the water's surface.)
About 3% of epileptic people get triggered by flashing lights– so no, it's not irrealistic to have an oc with epilepsy and this specific trigger, but it's not the most common one.
The most common causes are sleep deprivation and stress, followed by anxiety, dehydration, lack of oxygen, alcohol, low sugar and hormonal changes (like ✨️periods✨️). Everything that could mess with your brain chemistry, really.
It's waking up early or staying up late for me :) That, and lack of oxygen. Also, talking while sleepy or while doing physical exercise. I don't know why, but my brain sees talking as a Very Tiring Additional Task.
The anxiety of not sleeping enough can start a vicious circle that I find kinda ironic: you're stressed –> you can't sleep –> you worry about having a seizure –> you get even more stressed –> you can't sleep –> repeat
(Which is why it's recommended to epileptic people to go to a therapist in order to learn how to manage anxiety and stress).
What to do to lower the probability of seizures or keep them in check:
Take your meds
Avoid your triggers
Don't drink (too much) alcohol or caffeine
Sleep at least eight hours a day. I sleep ten hours after the medicine dose gets increased, and go back to 8 and a half after a few weeks. It also takes me a while (20 minutes-half an hour) to get up in the morning.
If your seizures are under control, you'll be able to sleep less than that without the anxiety of having a seizure the following day gnawing at you.
If the seizures aren't totally under control (yet) and could put you in danger, sleeping less than necessary means you take the following day off unless there's a super important event you need to attend, like a doctor visit– in that case, you'll still try to sleep and rest for the rest of the day. If you suffer of insomnia or have difficulty falling asleep, you'll have to take sleeping drugs/pills/drops.
People (especially with uncontrolled seizures) take note of and count every hour slept – not just when they fall asleep and get up in the morning, but also when they get up during the night and how long they stayed awake before re-falling asleep.
IF your character's trigger is lack of sleep, for example, something that could bother them (as it bothers people in real life too) is being forced to wake up early in the morning and go to bed late at night. Most seizures will happen either when he just woke up or when he's about to go to bed. After getting up, strong sensorial stimuli (like loud music or sunlight) might throw them off, so they will avoid those.
If someone talks loudly to your character when they just woke up, they're gonna get punched. Just saying.
About meds
Meds: every medicine has side effects... And again, how intense they are depend on your character. They can be basically nonexistent, very minimal (some drowsiness and headaches here and there) or so intense it gets in the way of your day-to-day function. Some people with epilepsy drop the meds because the side effects harm them more than epilepsy itself.
You usually take the meds twice a day– some people put an alarm on their phone as a reminder or use pill organizers.
Some common side effects:
Somnolence
Drowsiness
Brain fog
Fatigue
Headaches
Irritability, agitation
Having said that, up to 60%-70% of people manages to keep their seizures under control just with their meds and with minimal side effects.
Limitations
People with epilepsy aren't usually allowed to drive anything (cars, bikes, scooters etc...), unless they have their doctor's permission and have gone a certain amount of time withouth seizures (said amount of time depends on local laws).
If your story is set in a fantasy world (or a world without meds nor ad hoc chirurgies), your character is probably going to avoid riding horses and fantastical creatures as well, unless their seizures are short absences or their level of consciousness during focals is high enough for them to avoid falling down.
Some people need to take time off school (or study at home/get homeschooled) if the illness is very unpredictable. This usually leads to isolation and has an impact on their mental health.
If the seizures aren't 100% under control: no swimming or extreme sports.
If there's a risk of tonic clonics (especially with no auras), travelling by plane and living alone can be risky.
Your character might want to avoid alcohol, caffeine and recreational drugs (even though some people say the last ones have helped them with their seizures).
If your oc lives in a world where meds exist... well, they're gonna take them. Don't forget meds.
If they're able to, they're gonna choose a job that allows them to keep a healthy sleep-wake cycle.
Other limitations are given by your character's specific triggers.
And finally *drum roll*...
Details that will make your oc feel realistic:
Character pays a lot of attention to their sleep routine. If they need to sleep nine hours? They're not gonna be available from, say, ten pm to eight am, extra hour in case they wake up during the night included.
... They might also get up later (and be sleepier) than the others in the morning and have brainfog if they're forced to wake up earlier.
Not going to late night parties, concerts or any activity that takes place at night.
Character is used to taking public transport.
Depending on the seizures, your character might stay away from fires, sharp objects or large water surfaces. They're also probably going to be wary of swimming (or not going to swim at all).
Character takes breaks to take their meds.
They avoid coffee and/or alcohol.
You don't need to go to the hospital for every grand mal. The only exceptions to this are situations where the oc's pregnant, it's their first tonic clonic, it lasts more than 5 minutes or they got badly injured. But otherwise, they'll stay at home and rest.
It'd be nice to see some seizures that aren't TCs represented. Like, character stopping mid sentence during an absence, jerking, automatisms...
Character takes a day off for neurological exams or blood tests.
Give them bruises after grand mals (unless they were already lying on soft surfaces). Imagine falling against a solid object (hopefully, not something sharp or the ground), convulsing and then getting away 100% unscathed. That's irrealistic, isn't it? They might even break a bone or get fatal wounds. Sometimes, people have sore muscles afterwards.
Also, the vast majority of people bite their tongue during a tonic clonic. Hot meals are a bit of a pain while the wound is still healing, so wait some days for those. They might have some slight trouble speaking because of that.
Some things/tropes to avoid:
Associating seizures with anything demonic or tie them to the supernatural.
Seizures (especially grand mals) used as a tool for prophetic visions. Or romanticizing seizures in general.
Make the characters perfectly lucid after the seizure. Realistically, they're going to be confused, gaze slightly unfocused, and will take some seconds to remember what was going on (absence) or VERY confused, speak gibberish and even momentarily forgetting their name, birthday and nationality (tonic clonic).
Reveal their illness in an overly dramatic way.
Having said that, good writing!
