Myth: “You’re going to bite your tongue off!”
Reality:That I will not, and that you cannot. While I have bit a small piece off, my tongue is still attached and usable. It is physically impossible to bite your tongue off during a seizure.
Myth: “Epilepsy is contagious”
Reality: Epilepsy is NOT contagious; this is not the flu or chicken pox. This is a neurological condition.
Myth: “If you did not get seizures in childhood, you are not going to get them when you are older”
Reality: Oh reallllyy. I started my seizures at 19; not quite a child. Seizures and Epilepsy do not discriminate. Any age and race can be effected. To quote the Epilepsy Foundation, “seizures start for the first time in people over the age of 65 almost as often as it does in children.”
Myth: “Should we buy a tongue blade or something to stick into your mouth?”
Reality: Epilepsy 101: Do NOT stick ANYTHING into a seizing person’s mouth. You could very easily chip teeth, create a choking hazard, cut gums, and if you are really trying to place it in there – break someone’s jaw. I was so amendment about this I voluntarily gave a little speech about it in my college lecture. Just roll us over to our side, loosen our clothing around the neck, rid objects that are around us, and if possible cushion our heads.
Myth: “So I should try and stop the seizure. Should I bear hug you?”
Reality: Epilepsy 101 pt. 2: Do NOT restrain someone while they are seizing. You could cause injury to the person and yourself. Remember: we do not have control over our body due to a misfiring of neurons. We cannot just “stop” ourselves
Myth: “At least you won’t die from it”
Reality: While yes, death in epilepsy does not occur often; there is a condition called Sudden Unexpected Death in Epilepsy (SUDEP). Every year 1 out of 1,000 people die from SUDEP in those with controlled Epilepsy. Those who do not have their Epilepsy under control have a risk of 1 in 150. It is actually the leading cause of death in young adults with uncontrolled seizures (Find out more here: http://www.epilepsy.com/learn/impact/mortality/sudep). Those with Epilepsy cam even die from status epilepticus (prolonged seizure) which accounts for 22,000-42,000 deaths a year in the U.S. Aside from that, some of us who are allowed to drive can still have a seizure at any given moment and get into a car accident or drown.
Myth: “Why don’t you just go on disability? You really should not work and you will never get through school.”.”
Reality: Believe it or not we can actually work and do not have to go on disability. I have worked the entire 5 years thus far having Epilepsy and attended college in the last 4 years. People with Epilepsy are not usually physically limited – unless it is directly after the seizure then we basically turn into cats and do not want to be around people and sleep…or maybe that is just me. Epilepsy may make school harder and more difficult due to medication and frequency of seizures, but it is not impossible.
Myth: “You should never be left alone”
Reality: Actually I live on my own with my two children..granted yes, it is in the same apartment building as my parents but it is none the less my own apartment. Although, right after a seizure, there is some credibility that we should be monitored and depending on the person possibly even for the next few days but that all depends on the type of seizures, how the Epilepsy effects the person, and most importantly: what is best for the person and how they feel.
Myth: “You should never get pregnant. I don’t think your body can handle it”
Reality: Too late for that one. But it is also completely untrue. We just need extra monitoring, our medication levels need to be checked more, and our little ones need to be more closely watched. There has been studies to show that folic acid helps reduce the side effects of possible defects due to certain medications and I can vouch as a personal account that it at least helped me (although you want to start taking it before you get pregnant). While yes, the drop and rise and hormones may cause seizures for some – it does not mean they should avoid pregnancy. They just need to keep a very open line of communication with their doctors.
Myth: “If you do not convulsive, it is not a seizure” and “You cannot have two seizures in a row” – ER nurse
Reality: I never wanted to scream at a nurse so bad and she did not dare come to see me after I had my second seizure, right after she told my family and I that. First, there are over 40 different types of seizures and not all of them involve convulsing..I just got lucky to have those. Secondly, some people have up to 100 seizures a day (go ahead, look it up) never mind two. This is what really got me into educating everyone who asked me about my condition. Granted they got more than they asked for but I can only hope they passed that information on..and I hope that nurse learned her lesson and next time avoid a preventable accident.