Epilepsy Stigma

Epilepsy has been misunderstood and often viewed in a negative light throughout history. The word "epilepsy" comes from ancient Greek and means "being seized by forces from without." This refers to the supposed supernatural origins of the disease. Those with epilepsy have been seen as mentally ill, possessed, or faking their symptoms in the past.¹

Over time, these false claims about epilepsy faded. But the negative attitudes and stigma never went away. Stigma can affect your:¹

• Quality of life
• Self-esteem
• Ability to control your seizures

Doctors now know more about epilepsy and how to treat it. But people with epilepsy still face negative attitudes from others.¹

What is epilepsy stigma?

Epilepsy stigma is the negative attitude and treatment that people with epilepsy often experience. This can include unfair treatment at work, school, or in social situations. It can also be feeling like you are not understood or supported by family and friends.^1,2

There are a lot of myths and misconceptions about epilepsy. This can make it hard for people to understand what epilepsy is and how it affects people. You might be left feeling isolated and alone.^1,2

What are the impacts of epilepsy stigma?

The effects of stigma can be far-reaching. It can make it hard to get or keep a job, make friends, and live a normal life.^1,2

Workplace

Epilepsy stigma can make it difficult to find or keep a job. Epilepsy is a qualified disability under the Americans with Disability Act (ADA). But many people with epilepsy do not tell their employers about their condition for fear of unfair treatment. Many people are afraid that their boss will find a reason to fire them, even if the law protects them.^1,3

Healthcare

People with epilepsy may face stigma when dealing with the healthcare system. They can be denied care, get treated differently, or feel like they are not taken seriously.^1,4

Controlling your seizures is harder when you cannot access care, have fewer treatment options, or are denied services. Stigma may lead some people with epilepsy to hide their condition, all from fear of negative perceptions.⁴

Schools

Epilepsy stigma can make it difficult for children to succeed in school. Some kids with epilepsy may be teased by other kids or treated differently by their teachers. This might mean fewer opportunities than their classmates. There are laws in place to protect students from unfair treatment. But this does not stop people from discriminating against others or bullying them.¹

Are some people at greater risk than others?

Anyone with epilepsy is at risk of experiencing stigma. But some factors can increase your risk of experiencing epilepsy stigma:^1,5

• Having a visible seizure – If you have visible seizures, you may be more likely to experience stigma. This is because people may not understand what is happening and might be scared or uncomfortable.
• Being a child – Children with epilepsy are more likely to experience stigma than adults. This is because they may not understand their condition and may be teased by other kids.
• Having low income – People with epilepsy who have a low income may be more likely to experience stigma. This is because they may not be able to afford the treatments or care they need.
• Living in a rural area – People who live in rural areas may be more likely to experience stigma. This is because there may be a lack of understanding about epilepsy and fewer resources available.

Coping with these impacts

Epilepsy is often misunderstood because people do not know enough about it. If you are struggling with stigma, you are not alone. Some tips for coping include:^1,6

• Educate yourself and others – Learn what epilepsy is and how it affects people. Share your knowledge with others to help dispel their misunderstandings about the condition.
• Talk to someone you trust – Share your experiences. This can help you feel supported and less alone.
• Join a support group – Connecting with others who have epilepsy can help reduce feelings of isolation and loneliness.
• Ask for help – Do not be afraid to ask for professional help if you are struggling to cope. Your mental health is just as important as your physical health.

Living with epilepsy often means coping with stigma. This can be a difficult and isolating experience. Learn as much as you can about epilepsy, and do not be afraid to share your knowledge with others. Find someone you trust and seek out support if you are struggling to cope. There are many resources available to help you navigate this experience.^1,6