Cut out of a head with brainwaves and a purple ribbon for epilepsy awareness.

What people with epilepsy want you to know

Though our modern understanding of epilepsy has come a long way, it can still be a mysterious subject for many people. It’s a condition with a long history of disproven theories, misconceptions, and social stigma. As a result, it can be challenging for people with epilepsy to feel their condition is properly understood. 

There is often a substantial gap between what the struggles of epilepsy actually entail, and how they’re perceived to be. 

When you discover that someone you know has epilepsy, you can help them feel more comfortable by understanding a few things about their condition.

To raise awareness, we asked people with epilepsy what they want you to know. This is what they said.

Epilepsy is not uncommon

By and large, our culture tends to regard epilepsy as rare or unusual. The truth is, approximately 1 in 25 people will develop epilepsy in their lifetime. By some estimates, at least 50 million people are affected by this condition worldwide. It affects people of all ages, social groups, income levels, and lifestyles. By the numbers, it’s comparably as common as migraines, dementia, or Alzheimer’s disease. 

Not all seizures are the same

Many people have a specific idea about what seizures are and what they look like. Typically, people think of tonic-clonic seizures (previously referred to as grand mal), which are characterised by loss of consciousness and sudden, erratic movements. In reality, there are several types of seizures with a variety of different symptoms. 

Sometimes people have seizures with subtle symptoms, such as rapidly fluttering their eyes or seeming to stare into space for a few seconds. You may have the sense that something is off about the person, briefly, which may be a sign that they had a seizure. If this happens, there’s no need to overreact or fuss. In most cases, people who have had a seizure will feel more comfortable if you remain calm and allow them to excuse themselves quietly to rest. If you’re not sure how to help, just ask. 

Only rarely do people require an ambulance or serious medical attention after a seizure. Though injuries during a seizure are possible, these can be treated with simple first-aid supplies in most cases. Learning seizure first aid will help you be prepared and know if and when an ambulance needs to be called.

Seizure first aid — What to do when someone has a seizure [Downloadable]

Cut out of a head with brainwaves and a purple ribbon for epilepsy awareness.

Not all seizures are caused by epilepsy

Seizures can occur for a whole array of different reasons, even for people who have epilepsy. Seizures that are caused by epilepsy, referred to as epileptic seizures, are distinctly caused by abnormal electrical discharges in the brain. 

Non-epileptic seizures can have many causes, including drops in blood pressure, substance misuse, sleep disorders, or severe trauma, to name a few. See our article about different types of seizures and their symptoms to learn more. 

It isn’t just seizures — epilepsy affects relationships and everyday life

People with epilepsy often face many limitations in everyday activities such as driving or certain jobs. Some also struggle with their relationships. Because those closest to them often have to adjust their lives to keep them safe, people with epilepsy can feel like a burden on friends and family.

Discrimination and bullying is unfortnately quite common, especially by those who misunderstand the condition. Others may react with ridicule or assume the person is faking their symptoms.

Because the condition is so misunderstood, people are often unsure how to react to a seizure when they see one, or in some cases don’t see one. People with epilepsy sometimes feel like others don’t believe they have a “real condition” because their seizures are very subtle and don’t appear like “obvious” seizures that most expect. 

It’s important to understand that symptoms are beyond the person’s control, and they should be treated with respect. 

Person sitting on bed and looking down, resting their face on their hands.

Diagnosis and treatment can be difficult

Diagnosing the condition is not a straightforward process. It can be difficult to determine what causes a seizure in the best of circumstances. When a person experiences recurrent seizures, they may be given medication and have to take many tests over several months or years before being properly diagnosed. 

Medication usually comes with heavy side effects and can take years of trial and error to find the right one, or combination. For 30% of people with epilepsy, medication cannot effectively control or reduce their seizures, making research into seizure forecasting extremely important for improving quality of life.

Calmness and privacy are better than urgency and attention

Having a seizure in public is another worry, as it can lead to high anxiety and embarrassment. As mentioned above, in most cases a person having a seizure will not require medical attention afterward. Most likely, they will only need to rest and take it easy until they have recovered. 

After a seizure, some people prefer if you remain calm and give them space. This is especially comforting following a seizure which often comes with confusion or uncharacteristic aggression.

Download and share [Little know truths about epilepsy – Infographic]

Infographic titled 'Little-known truths about epilepsy'

Help end the stigma

Everyone is different and experiences their epilepsy in unique ways with personal preferences on how others handle their events in public. If you don’t know what a person is comfortable with, just ask them politely.

Whether you know a person with epilepsy personally or not, we can all make a difference by learning more and sharing what we know. The more we understand this condition and how it affects people living with it, the less stigma will affect them. 

If you learned something new or surprising in this article, it’s likely that people close to you would too. Sharing articles like this one is an enormous contribution to ending the stigma.