It can be uncomfortable telling others you have epilepsy. It’s your personal decision whether to share your health details. But educating key people in your life about your seizures can keep you safer, help reduce stigma around the disorder, and allow you to live more fully.
You don’t need to share every detail of your medical history. But people you spend time with regularly should understand the basics about epilepsy, specifically how it affects you. That includes what your seizures look like, how long they usually last, and what kind of help you do and don’t need.
When others understand what’s happening and know what to do, a seizure may be less frightening for all involved. With more knowledge, they can take clear-headed action that supports you.
Explaining Your Seizures
When some hear the word “seizure,” they picture convulsions, or rapid shaking and tensing. These are called tonic-clonic seizures. But fewer people know about focal seizures that are less obvious.
“Most seizures are fairly subtle — people may stare, they may be doing a little picking, maybe have a little chewing — and if you're not paying attention to that person, you really don't know what's going on,” says Jack J. Lin, MD, director of the UC Davis Comprehensive Epilepsy Program.
Because of this wide range of seizure symptoms, people around you may not know when you’re having one or how to respond if they do notice something is wrong.
“You can educate people by saying, ‘If I stop responding in the middle of talking to you, then just know that my mind is having little short circuits,’” says Lin. “Make sure I’m safe: Get me to sit down, and I should come back in a short amount of time.”
For convulsive seizures, explain how your body may react, and make sure people know if you have rescue medications and how to use them.
“Luckily, now there are rescue medications that are nasal sprays like the kind you take for allergies, so it’s easy for anyone to administer,” says Lin. “So you can show them where you keep it and how it works.”
Those around you should also understand what not to do when you have a seizure. They should never put anything in your mouth during a seizure, since that can cause choking or injury.
“Tell people, ‘If I’m shaking, pad my head, move me away from any sort of hard objects, turn me on my side, and stay with me at all times,” says Lin.
One of the most important things you can teach others is how to stay calm. Seizures can look scary, especially if someone has never seen one before. Explaining them ahead of time helps people feel more prepared in the moment.
Emergency Preparedness
You do want people to know what to do if you have a true emergency. For most people with epilepsy, this is rare. Most people with epilepsy have well-controlled symptoms with anti-seizure treatment, says Lin. But about one-third of people have intractable epilepsy, or epilepsy that doesn’t respond well to treatment.
“People should know if you don't come back to your normal state within two to three minutes of a seizure, they should be ready to call 911,” he says. You should also make sure people know to call 911 or go to an emergency room if you have more than one seizure back-to-back, have trouble breathing or regaining consciousness, or injure yourself during a seizure.
Consider asking the people in your life who are around you the most if they’ll learn seizure first aid more formally. Knowing basic seizure reaction steps like staying with you, protecting you from injury, and timing your seizure can prevent complications and unnecessary emergency calls.
Organizations like the Epilepsy Foundation offer training programs that teach people how to respond to epileptic seizures. These programs go beyond the basics and help people feel prepared in real-life situations.
Creating a Seizure Action Plan
One of the most effective ways to educate other people about your seizures is to create a clear, written seizure action plan. This is a simple document that outlines exactly what someone should do if you have a seizure.
“Everyone should have an individualized plan based on their seizure frequency, severity, and contact with outside individuals,” says Lin.
Your plan might include details like where your medication is kept, when to use it, how long your seizures typically last, and when to call for emergency help. You can share this plan with co-workers, classmates, family members, or anyone else you’re often around.
Having something written down takes the pressure off both you and the people around you. In a stressful moment, they don’t have to rely on memory. They can follow the steps you’ve already laid out in your action plan.
Talking About Seizures at Work or School
Deciding whether to share your diagnosis at work or school is a personal choice. You have the right to privacy, but there are also situations where telling others can improve your safety and support. Some of this decision comes down to how well-controlled your seizures are.
“For about two-thirds of people, medication keeps things under control, so you can just give your employer a heads up by saying, ‘I may have a seizure once in a while, but it’s really unusual, and I’m really able to function at the highest level possible,’” says Lin.
If you have drug-resistant epilepsy, you may need to take a different approach.
“Have a conversation about the severity and what kind of accommodation you will need in order to perform your job,” says Lin. “Because most people with epilepsy can still perform their job. It's just that they need a little bit of accommodation.”
In the U.S., laws like the Americans with Disabilities Act (ADA) protect your right to reasonable accommodations. That might include flexible scheduling, a safe place to rest after a seizure, or adjustments to your workload.
Ultimately, you want to feel like you can do your job or attend school without extra stress. When those around you understand your seizures, you know that if something happens, someone nearby knows how to help.
Educating Others Empowers You
The goal of these conversations is to help you take more control over your condition. When you feel prepared and supported, you can move through daily life with more confidence.
“Destigmatizing epilepsy is really an important service,” says Lin. “So often I see people with epilepsy become self-isolated, but you can live a full life with this condition. Most people with epilepsy live a very productive, fulfilling life, and educating the public helps further that.”
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
Jack J. Lin, MD, neurologist, epilepsy expert, and director, UC Davis Comprehensive Epilepsy Program.
Mayo Clinic: “Tonic-clonic (grand mal) seizures.”
UF Health: “Seizures: Patient Education.”
CDC: “First Aid for Seizures.”
Epilepsy Foundation: “Epilepsy Foundation Training & Education,” “Seizure Action Plan,” “Employer Accommodations For Epilepsy.”
