10 Things People with Epilepsy Want You to Know
So, there’s a lot of fact sheets and information put out there by doctors and experts about epilepsy and seizure disorders. These are important, and a good starting point if you have never heard the word “epilepsy” and think it maybe a dance or a type of pasta.
But what these won’t tell you more often than not is what we the people with epilepsy actually want and need you to know in addition to those dry, expert facts.
So I, along with my epilepsy tribe, have come up on the 10 biggest things that we want you to know about epilepsy and the strong, badass fighters going through it everyday.
1. It’s not just seizures.
Sure, the seizures we have are important to know about. You need to know the first aid that is appropriate for our type of seizure, and what to do when this happens. But epilepsy is a 24/7 deal with medication side effects that make us feel like zombies that have been hit by cricket bats, seizure hangovers, headaches, auras, migraines and a whole buffet of other symptoms and side effects that we battle every day.
Arabella G epilepsy isn't just seizures
Sam A sometimes afterwards you seem drunk
Katy T I wish people knew epilepsy is more than just seizures. It's triggers and injuries and vomiting and immunity and delayed development and sleep disorders and increased risk of depression and anxiety (understandably).
Sarah Y people do things after a seizure that they're unaware of doing and have no control over.
Gina P absolutely disappointed in NZ's medical system for persistently prescribing medications without offering education and support for nutritional and natural therapies such as the well researched nutritional ketogenic diet which is effective in reducing seizures for 60% of patients and has far less side effects. There are plenty of other natural ways too.
Penny F Seizures can be really exhausting! It's not something we choose. I know when I took time off on sick leave afterwards it was because I had a humongous headache or was sore or tired... it was so disappointing to work for a HEALTH organisation and have them of all places not understand that.
2. Not all seizures look the same.
In fact, there are over 40 different types of seizures! It’s not all what you see on TV and we don’t all wake up straight away able to talk. Not all these seizures require hospitalisation, but we still need to know what to look out for and what epilepsy looks like to the individual. Our brains are so complicated, and they can misfire in so many weird and (not so) wonderful ways, it’s no wonder there are so many different ways seizures can present themselves. Unfortunately, there is a serious lack of representation and so different types of seizures are often dismissed or misunderstood.
Lillian M not all seizures are the same or look the same
Amy T There's more than one kind of seizure
Carly R I wish people knew many seizures present differently
Rinae V absence seizures can't always be seen but can be quite a scary experience.
Rebecca M That people had more knowledge about different types of epilepsy and what appropriate actions are. To rid the stigmatism and promote knowledge and support.
Danni K I really wish there was more knowledge about absence seizures.
3. It can be life threatening.
Personally, I try and skip over this part when explaining it to people new to the condition because I automatically try to downplay it. But it’s true. Depending on where you have a seizure, what kind you have, if you get injured… and SUDEP (Sudden Unexplained Death in Epilepsy) is a very rare but very real threat we live with. And something we lost my younger sister to 2 years ago at only 22yrs old.
Carly R they can be life threatening
4. Lots of things can trigger epilepsy
This one is two-fold. There are lots of things that bring on the condition itself. That’s to say, we’re not all born with it. From head injuries to something idiopathic, there are lots of things that can trigger a seizure disorder and at any time during a person’s life.
Also, there are lots of things that can trigger a person with epilepsy to have a seizure. Yes, flashing lights suck for some of us, but for others it might be heat, stress, sleep deprivation, certain scents, and a whole range of things as individual as the person themselves. Ask the person what their triggers are, and don’t dismiss anything they say as something that “shouldn’t bring on a seizure” because you read somewhere what triggers seizures. Listen to the person, they know their condition better than you do!
Lesley B they are lots of things that can bring on epilepsy seizure and any one can get epilepsy can get any one at any age
5. People with epilepsy look normal.
Yes, you could well have walked past someone with epilepsy today and not even have realised! There isn’t one “look” for a person with epilepsy, so you probably wouldn’t be able to pick us out of a line up.
One reason for this is that we won’t all have uncontrolled seizures, so the need for you step in at a moment’s notice to perform seizure first aid may not be required. But yes, we do still have epilepsy. You can be seizure free and still have epilepsy (there’s no “remission” for this condition).
Andrea G That people with epilepsy still 'look normal' (quote from my son's friend's parents)
Katie C I've had this quite a few times when I have said (usually in passing) 'oh I've got epilepsy' and the reply has been, 'oh you don't look like you have epilepsy'. Like 🤨 how am I meant to look ?
Lydia J That managing meds to get seizure free is difficult and stressful. That reaching that goal doesn't mean you are now "okay" it's always just okay for now but how long now lasts for is unknown. It can be something as simple as the current virus doing the rounds that will derail all your hard work.
6. People with epilepsy can lead active lives and hold down full time jobs, or can be completely disabled, or be somewhere in between.
Some of us are able to function or even get to a point of being seizure-free, allowing us to work full time or lead busy and active lives. On the other hand, epilepsy can also be severely debilitating and leave people unable to live independently. However big a role epilepsy plays in our lives, it will still impact us and it’s important to never assume.
Melany A That it’s not just seizures and some are severely intellectually impaired from this - unable to ever live independent lives
Steph M We are individuals, just as is every human being an individual. Some people , even some doctors , think that you will be intellectually disabled and get an awful shock to find that you aren't. Some are- intellectual levels vary greatly among epileptics as they do within the general population. Some epileptics raise families, some don't. Some work full time, some work part-time and some can't go to work at all.
Aly C when i first got diagnosed with epilepsy I accepted it and carried on as normally as i could it was...then I had a terrible accident because I had a seizure and broke my ankle in seven places plus two bones in my leg, it has been nine months now and i still can't walk. epilepsy is a real eye opener and a big time life changer. it can shatter your world in the blink of an eye and the worst thing is is that I have no control over it.
7. We are strong as hell, resilient and have to be really tough!
But don’t let that fool you into thinking this is easy (just because we make it look good!).
Penny F Another one for me is about the stigma we bring on ourselves... I have to keep telling myself I haven't failed or done anything bad just because I have issues with my memory and depression and anxiety. Studies have shown that it is often associated with the same area (the left temporal lobe) as where my epilepsy originates. I manage the best I can, and I'm still here. One thing that has really helped me is having surgery for my epilepsy two years ago. OK, I still have seizures but they have gone from 5-12 a day to 1-2 a month. Add to that, I have not seriously hurt myself due to a seizure since the surgery and on top of that, I tell myself that my brain has been used in research for epilepsy and other neurological disorders.
Lacey B I want people to know that some of us love our epilepsy and wouldn’t give it back even if we had a chance. It’s only made me a better person. I love harder, hope more, appreciate every second, and every day... Before, I took things for granted. The warriors I have met have been a true blessing in my life.
Not all of us sit back and let it control our lives, not all of us feel like we got the short end of the stick, not all of us feel sorry for ourselves. I own my epilepsy, it doesn’t own me.I want people to know that, and I want people to know that they can do the same.
8. Do some research and ask questions instead of making assumptions.
Ask us before jumping to conclusions! And just because someone you knew at some other time, or someone you saw on TV, has epilepsy it doesn’t mean it will look the same for us. Ask us, everyone will be happier for it.
This doesn’t mean we always get judgy judgers, there are certainly the gems out there who shine with compassion. Good on you, mate!
Jessie L To do research before you pass judgment
Lillian M That epilepsy isn’t something you can just “catch”. When I was diagnosed as a kid, lots of people wouldn’t come near me coz they all thought they’d catch what I had
Lesley Br Years ago I had to get a taxi home I told the cab driver I had epilepsy and he asked me if you can catch it I said no you can't catch it
Penny F I've been amazed when I had seizures in taxis after doing my grocery shopping and not only did they take me to hospital, they took my groceries back to the office and brought them home to me when I was able to go home. Absolutely amazing! I've also had a bus driver who I told about my seizures and one time I missed my stop as I was in the middle of an absent... this was no biggie as it just meant I had to do a scenic tour of some of Whangarei and get off on the opposite side of the road but since then, if there is ever a time where I don't push the button he will stop anyway. It's such a pleasant experience when people actually have some understanding and compassion too.
Rahaf A Not to judge people without knowing what the epilepsy is.
9. We may feel like a burden to our family and those around us. And it can be lonely as hell!
For me, not being able to drive is one thing that always gets me down. When I’m able to walk places, it’s great and makes me feel more independent. But having to rely on others so much can feel like a burden, and it can all feel very lonely sometimes.
Gina P It can be isolating, not just for the person who is diagnosed with epilepsy, but also their immediate carers who must stay and not leave them alone or with an incompetent person who does not know how to manage seizures safely.. Some important, sentimental events are missed, and can really take a toll on friendships and career when you can't be relied on to show up.
Aly C it is a heartbreaker when all your friends ditch you because you’re different, your family dont talk to u any more and push u in to a corner because they are afraid to see the one they love being different and suffering. the sad thing is is that I don't blame them im not angry I actually understand. and i am the one who has a burden on my shoulders because of this horrible curse i have. others have a choice i don't i'm trapped in a dark corner.
10. Seeing us have a seizure is scary but after a seizure, I’m still me!
I have had the *unique pleasure* of seeing a video of myself having a seizure after having to film it for the doctors a few years back. It’s not fun! It can be scary as hell, and I have no words for how muchI admire those around me for staying calm when they happen.
But after it happens, I’m still me. I won’t break, and there’s a whole lot more to me than my condition.
Lillian M That regardless of whether an epileptic person is having seizures still or not, it’s never okay for others to treat you any differently to anyone else, especially in a work environment. I’ve been treated like an invalid in a few workplaces due to the fact I have epilepsy, regardless of the length of time I’ve been seizure free for
Lesley B we are just the same as any one else and would like to be treated like everyone else and if people gave as a chance at a job they would see we can do a job just as well as anyone else
So there you have it! We may have epilepsy, but we’re so much more than that!
A huge thanks to my epilepsy tribe for contributing to this post. If you want to know more about this topic from the perspective of family or caregivers for people with epilepsy, check out this post.
You’ve got this!