More than 50 million people worldwide live with epilepsy, yet it’s still a misunderstood condition lacking awareness and understanding in the general community. Often, due to stigmas, people living with epilepsy try to conceal their condition from those around them. If you’re spending a lot of time with someone who has seizures, and they trust you, they will surely disclose their epilepsy diagnosis with you. Being aware of their condition, you can also be prepared in case they ever have a seizure in your presence. Here are a few things you need to keep in mind and absolutely not say to someone who has epilepsy.
DON’T SAY SOMETHING IGNORANT
Even in 2020, epilepsy is still widely misunderstood. Never say things like, “Is it contagious?” or “Was it something you did?” Epilepsy is not a transmittable disease but a neurological disorder. You can ask how it began but not if it started because of something they did. The fact that this person has reached out to you means they trust you enough and feel safe talking to you about this. Don’t lower your voice as if you’re talking about something dreadful. Speak normally and make the person feel at ease. Most importantly, research epilepsy and become well-informed about the condition – become an advocate!
DON’T MAKE THEM FEEL BAD ABOUT THEIR CONDITION
After they have shared this information with you, saying things like, “Are you okay?”, “That’s so sad”, or “I hope you don’t have a seizure when I’m with you” is awful. Having epilepsy can impact certain things in their life like school attendance, employment, relationships and social interactions. Don’t start speaking to the person differently. Knowledge of a medical condition shouldn’t change the relationship you’ve shared with the person for years. Also, don’t suddenly start asking them if they need help with things that they normally didn’t. It can be insulting. If they didn’t need help with something before this, they probably won’t need it now.
DON’T DISMISS THEIR CONDITION
Don’t say things like, “It’s not a big deal’, “Everyone has problems”, “You don’t look like you have epilepsy.” You cannot know what condition someone is living with based on their physical appearance. Not everyone who has a seizure falls to the ground and experiences muscle spasms. There are several different types of seizures. Many experience partial seizures that only result in changes in your thoughts, feelings, senses and your body, others experience seizures where only their eyes twitch. Learn about your loved one’s seizures so that you can know what they are experiencing.
DON’T COMPARE THE PERSON’S ILLNESS
Saying things like, “Be grateful you don’t have cancer.”, “My dog had a seizure.”, or “I know how you feel” is not helpful. They don’t need to imagine how things could have been worse. Also, if you haven’t been through the same experience, you really don’t know how the person feels.
DON’T BE INCONSIDERATE
The person sharing this information with you trusts you. Don’t say things like, “If that ever happened to me I’d kill myself.”, “Do you ever fake a seizure?” Although you might have the best intentions, be careful about what you say. Words can have a huge impact so always make sure you speak positively. Communicate and reassure the person that they are not alone and that you will always be there in times of need.
Many people diagnosed with epilepsy wear a medical device to alert caregivers in case they have a seizure. Since these devices look novel, wearing one tends to single them out, making them feel awkward or uncomfortable with the attention it draws – similar to how an innocent or insensitive statement may make them feel.
Inspyre by SmartMonitor, on the other hand, is a seizure-monitoring app that pairs with popular wearables, such as the Apple Watch and Samsung Watches. While no out-of-the-ordinary device is required, the app keeps epileptic patients safe by alerting caregivers via a text and call on their mobile phones. It gives users a sense of normalcy and autonomy while also providing loved ones with peace of mind knowing that they would be alerted in case of a seizure.
It is always great to be prepared in case someone around you has a seizure. Read our blog on what to do when someone is having a seizure. Being the holiday season, learn about triggers and care that people with epilepsy can take. Check out our website or follow us on Facebook and Instagram for more information.