Even in today’s advanced society, the epilepsy-stigma struggle is real. If you’re feeling frustrated due to stigma you’ve experience in your life, try to remember that the general public may not know what epilepsy truly is -- they don’t live with it as you and your caregivers do.
As difficult and time-consuming as it may be, the responsibility for epilepsy education usually falls on you and your family and friends, other people living with epilepsy, and doctors, nurses, and medical educators -- we all have to work together to diffuse epilepsy myths. Education, either formal or informal (like a quick, friendly conversation) can help others understand epilepsy and prevent social stigma.
How Should I Explain Epilepsy to Others?
You can explain it in any way you feel comfortable, in any situation where you feel some person-to-person education might be necessary. You might even carry this definition with you on a card, which you could give to people to quickly explain your condition:
“I am a person living with epilepsy. Epilepsy is a group of conditions that cause seizures starting in the brain, leading to sudden, uncontrolled electrical disturbances that may cause changes in my behavior, consciousness, movements, and feelings. Seizures range in strength or severity and can be different each time. Most seizures last 30 seconds to two minutes. And a seizure that lasts more than five minutes is considered a medical emergency. Please call 911 if that happens. I would love to answer any questions you have about my condition.”
History, Myths, and Epilepsy Stigma
Learning a bit about the history of epilepsy can help you, and your caregiver to educate others. Plus it’s pretty interesting. Many epilepsy myths originated in ancient times when people did not understand the condition. Reports of epilepsy originated in Assyrian texts and ancient Greek Hippocratic medical texts.
Hippocrates knew epilepsy was a brain disorder, but before the 18th century, many believed seizures were divine punishments or demonic possessions. France led epilepsy research beginning in the 19th century, as Maisonneuve, Calmeil, and Dominique Esquirol described the aura, petit and grand mal seizures, and separated it from insanity. Good thing! Fritsch, Hitzig, and Jackson proved seizures were caused by an electrochemical energy discharge in the brain. Ramón y Cajal described neurons and synapses and Berger created the electroencephalogram (“EEG”) to measure electrical discharges that cause seizures. Due to this medical work, the stigma of epilepsy has slowly receded as of the writing of this post. Cannabidiol oil (“CBD”) is an exciting new way that may help bring seizures under control, but is not legal everywhere.
Here are some false ideas people have about epilepsy, which you may encounter:People can swallow their tongues.
Something should be put in the mouth of a person having a seizure.
It’s contagious, and only kids get it.
People with it can’t hold down a job.
Modern medications have made it extremely rare.
You can’t die from it.
First, people can’t “swallow” their tongues, and putting something in a person with epilepsy’s mouth during a seizure could cause choking or even break their jaw. Restraining a seizing person could cause injury, so ask people to gently rolling you on one side and put something soft under your head.
We know epilepsy is not contagious, extremely rare, or limited to children. In fact, epilepsy is quite common in adults over 65, and seizure severity may limit your employment but does not affect your intelligence in any way. While most epilepsy can be controlled medically, we do need more research, especially in the realm of medical cannabis, which has been shown to prevent seizures in some cases.
People may ask you about this, as well! If the social stigma continues at school, work, or anywhere else, you might point out that epilepsy is more common in the United States than cerebral palsy, cystic fibrosis, muscular dystrophy, and multiple sclerosis combined -- in fact, 3.4 million people had it in 2017.
You should let people know that uncontrolled epilepsy or conditions resulting from frequent seizures can result in death, especially in children -- tell them that it is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. Let them know you’re not trying to scare them, but that they need to know it’s a serious but controllable condition. You can also let them know how to contact your caregiver and to call 911 in you have a seizure.
Tell them that people living with epilepsy are not fragile beings always on the edge of a seizure in most cases. Let them know that:
- Some people have one or two seizures in a lifetime while others have constant seizures over the course of a day.
- When seizures are controlled, people with epilepsy live entirely normal lives.
How Your Caregiver Can Help You Control Your Seizures
Regardless of the prevention of social stigmas against people living with epilepsy due to ignorance, your caregiver should not have them. This is a requirement for you to enjoy and live your life to the fullest. Even caregivers can use a little education and need you to communicate with them frequently and openly about your needs. Remind them that you must:
- Take prescribed medications correctly, only altering dosages after discussing with a doctor
- Get enough rest and sleep
- Wear medical alert bracelets
- Exercise frequently
- Drink enough water to stay hydrated
Living with epilepsy may feel overwhelming at times. To reduce these feelings, you and your support network should:
- Fully educate themselves
- Ask questions of medical professionals
- Ignore negative reactions in public or correct myths
- Live as independently as possible
- Find a doctor with whom you all feel comfortable
- Try not to worry about having a seizure and explore treatment options
- Find an epilepsy support group
Avoiding excessive alcohol consumption, tobacco consumption, and high-stress situations can reduce your seizures as well. Let coworkers, a seizure buddy, or others know how to help you if you have a seizure, telling them to:
- Loosen tight neck wear
- Don’t put fingers or anything in your mouth
- Don’t restrain you
- Clear away dangerous objects
- Stay until medical personnel arrive
- Observe you closely
- Time seizures
- Remain calm
Let them know that epilepsy is a treatable disorder in most people, and the medical field is rapidly finding new solutions to reduce medicine side effects and improve quality of life.
Always remember that social stigma is caused by ignorance, so continual education of people unfamiliar with it can improve understanding and social reactions, as well as your happiness.
A solution you might look into is the Brain Sentinel SeizureLink System; a discreet, non-prescription personal alerting system that is covered by a sleeve. The independent system calls your caregivers when it recognizes a sustained tonic muscle contraction that lasts at least 9 seconds.