Epilepsy is a neurological disorder that is stigmatized and largely misunderstood. For someone like myself who lives with this diagnosis, this can lead to feeling isolated, alone, and depressed. For many, it puts a wall up between themselves and all those normal people out there. So if you know someone with epilepsy here are some things not to say.
1. Accuse them of faking seizures
Unfortunately, this is a real problem for a lot of epileptics. You see not all seizures look like what you might think. Not every seizure causes a person to shake, foam at the mouth, and lose consciousness. For more info on the different kinds of seizures see my post: A Beginners Guide to Seizures. How a person may behave just prior, during, and after a seizure will vary from person to person. It’s different for everyone and there is no cookie cutter image of a seizure or an epileptic. Sometimes when someone witnesses someone have a seizure for the first time and it doesn’t match the image in their head that person accuses them of faking.
They aren’t faking. They aren’t faking before the seizure when they tell you they don’t feel right if they have the state of mind to tell you. They aren’t faking if they happen to be conscious during the seizure and tell you what is happening. They aren’t faking when they take anywhere from 2 days to a couple weeks to recover. A seizure is an exhaustive event and it takes time to fully recover. They aren’t faking that recovery. They aren’t faking if they start swearing during a seizure. This too isn’t all that uncommon.
The consequences of accusing someone of faking a seizure can be devastating. Especially if that person is a family member. It could cause you to lose a valuable relationship. Worse if that person doesn’t have stereotypical seizures you might convince their support network they are faking when they aren’t. This has caused serious tragedies. People have died because no one took their seizures seriously and got them they help they needed when they needed it. The last thing you want is to apologize to them at their funeral.
2. Tell them they look normal
This is one of those annoying things that people will say when you tell them you have epilepsy. “Oh my gosh! I never would have guessed. You look…so so normal!” This is rude and very annoying.
We understand that this usually means you are grossly misinformed about epilepsy but not all epileptics react well to this kind of reaction. They are telling you for one of two reasons: 1. They have to or 2. They feel they can trust you. Either way, this isn’t good.
Instead of saying something like this, hit the pause button, and instead, ask them for information. Obviously, epilepsy isn’t what you thought and they can explain it to you better. This way they can tell you themselves their limits, what to do, and anything to watch out for.
3. Make Jokes about it
If you yourself do not have epilepsy then telling your lovable epileptic friend or family member a joke about it is not okay. In fact, posting jokes or telling jokes about epilepsy is in extremely bad taste. It’s like making fun of someone with cancer. You wouldn’t walk up to someone who is going through chemo and make fun of their hair loss, would you? Same concept here. I even deleted a funny meme app I loved because of a meme making fun of epilepsy. Most people with this disorder do not find these things funny, but hurtful.
There are a few epileptics out there that might be okay with it but the more general consensus isn’t. When you think about the fact that epilepsy kills more people than breast and colon cancer and affects more people than other neurological disorders it loses the comedic feel.
You never know who you might be telling that joke to. What if you told that joke to a parent who just lost their child to epilepsy after a major seizure. You could ruin their whole day on what might have been a rare good day. It’s sad this needs to be said but epilepsy isn’t a joke. Stop treating it like one.
4. Try to compare medical conditions
There is always that one person who needs to be worse off than you. I get that we humans like to talk about ourselves. It’s innate and we all like to do it, but when someone tells you they have epilepsy this isn’t the time to tell your tragic medical story. Chances they are hoping for your support or just need to vent. Butting in and telling them about what you consider to be a relatable experience isn’t helpful in the least.
I am sure that your experience was emotional for you and you may be emotionally connecting to us through that experience but this isn’t the time to share. Instead just let us rant or ask how you can help. If we ask about your situation then share, but the best you can do is just give your loving support.
5. You can just get surgery, right?
Oh, this one infuriates me. There is the idea that the brain surgery some epileptics qualify for is a cure for seizures or that if you take a pill you are cured. This is not true. The truth is that epilepsy is extremely difficult to manage. It can take years of trying medication to find control and that’s if you are lucky. If you get to a point where you are testing for brain surgery there is no guarantee you will be eligible. Only epileptics with certain kinds of focalized epilepsy qualify for this surgery and even then there is no guarantee that it will cure your seizures. Your brain could still malfunction.
While I myself have found control on medication it took years to find that control. Once more because I have generalized epilepsy I do not qualify for brain surgery. My medication hasn’t made my seizures gone either. If I miss my pills there is a fair chance there will be a seizure in my near future. There is no cure for epilepsy. Once you have it you always have it. No matter how long an epileptic goes without a seizure there is always that lingering fear that they might have a seizure today. They wonder when it will happen. I went nine years without a seizure and then I missed my medication and seized. To have epilepsy is to live with a degree of fear. Our goal is to not let that fear control us.
I hope these five things help you navigate the waters a bit better around the epileptic in your life. If you are in doubt about whether something you want to say is appropriate or not there is one question that never fails to help you figure out the answer. Simply ask yourself if what you want to stay would make you look like or sound like an asshole. If the answer is yes then don’t say it.