Raising community awareness

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HealthWiki > Epilepsy and Seizures > Chapter 5: Acting against epilepsy stigma > Raising community awareness

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In this chapter:

 

In this chapter:

• Chapter 5: Acting against epilepsy stigma
• Understanding epilepsy stigma
• Fighting stigma with support groups
• Raising community awareness
• Challenging institutional stigma

Silence allows harmful ideas to spread and prevents useful information from being shared. Activities that raise awareness about epilepsy help break the silence and undo stigma.

Helping neighbors and community members understand epilepsy and seizures is key to reducing stigma and the harm it causes. Because stigma prevents people from talking about epilepsy, one way to act against stigma is to do the opposite—support a broader discussion of epilepsy.

People with epilepsy can take the lead on education

Public sharing by a person with epilepsy or a family member can show that epilepsy is both manageable and nothing to be ashamed of. They are more likely not to just share information but to speak from the heart. Stories and explanations from people with epilepsy carry the strength of their experiences of fear, courage, and resilience and can have a huge impact. People listen to them more closely, ask more questions, and often recognize how their own ideas and actions reflect stigma and discrimination. This encourages change in the community.

When people with epilepsy do not want to speak, or have a severe form of epilepsy that prevents them from speaking, a family member or caregiver can share what it means for someone with epilepsy to live the best life they can. Family members and caregivers can also talk about how epilepsy stigma affects the entire family and community.

Interacting personally with people affected by epilepsy is a powerful antidote to misinformation and stigma. It breaks down fear and builds empathy and understanding, all of which are necessary for people to act against stigma.

It felt good to be asked to share my story as part of a training on the harms of epilepsy stigma. For years, I would not have felt comfortable doing it. But this time, I was ready. Everyone really listened, and lots of people said that hearing from me made them “get it” in a new way.

Sharing information reduces stigma and harm

No matter what beliefs exist about epilepsy in a community, sharing correct information about what does and does not cause epilepsy and seizures, and how people with epilepsy can be helped, is one way to begin educating your community.

Ajeet is depressed. He had a seizure on the job 2 weeks ago, and after that his friends stopped relating with him. Now he wants to quit.

That’s hard. He can’t afford to lose that job.

I know his boss. Why don’t we offer to have our group give a talk on epilepsy at his workplace? If his co-workers understand epilepsy, maybe they will stop excluding him.

Activity

Epilepsy quiz: True or False?

When people do not talk openly about something, all sorts of ideas and explanations can develop that may or may not be true. This is certainly the case with epilepsy.

This activity can help a group raise and talk about the many commonly-held beliefs about epilepsy. The purpose of the activity is to learn about epilepsy and oppose beliefs that are wrong and can lead to stigma, discrimination, and harm. It can work with any number of people.

To prepare, create a deck of cards where each card has one of the statements provided on it (see next page). On the back of each card, write “True” if it is a true statement, and “False” if it is incorrect. See correct answers, brief explanations, and references to places in the book with more information.

Statements:

• Epilepsy can be caused by a head injury.
• You can get epilepsy by touching someone who had a seizure.
• Seizures are a punishment from a past life.
• A woman who has seizures should not get married or have children.
• Epilepsy is a medical condition that can be treated with daily medicine.
• Rubbing animal blood on a person with epilepsy will help them heal.
• Taking daily medicine can help control seizures.
• Hammer nails into a person’s head to release the spirit causing seizures.
• People with epilepsy should not play sports.
• A baby can develop epilepsy if the brain is injured during birth.
• Sharing food or dishes with a person who has epilepsy is dangerous.
• Anyone can get epilepsy.
• A person having a seizure can swallow their own tongue.
• Stress or trauma can sometimes lead to seizures.
• Smoke from burning herbs will stop a seizure.
• Rest, exercise, and healthy food can help control seizures.
• Epilepsy can be caused by a curse.
• Rare forms of epilepsy can cause lifelong problems with speech, learning, and movement.
• Put a stick in the mouth of a person having a seizure, to stop them from biting their tongue.
• Sudden unexpected death in epilepsy (SUDEP) is a myth.
• Sometimes people get seizures, and no one knows why.
• A baby can get seizures from a high fever.
• Some children “grow out of” having seizures.
• If a mother has epilepsy, her children will also.
• You can get epilepsy by kissing.
• Some people can tell when they are going to have a seizure.

Create more statements based on common beliefs in your community.

1. Introduction
   Start the activity by pointing out that people have heard many different things about what causes seizures or how to treat epilepsy. Some of the ideas are true and helpful, and others are false, based on myths, rumors, or fear, and often contribute to stigma.
2. Play the cards
   People form a line and one at a time pick a card, read it aloud, and say whether they think it is true or false. Ask people in the group who agree with the answer to raise their hand. Then ask the person with the card to turn it over and share the correct answer. Give clear instructions that a card should not be turned over until it has been read aloud and they have shared whether they think it is true or false. Briefly discuss the answer if necessary. As the next person steps up, the other goes to the back of the line.
3. Group reflection
   After all the cards have been read and discussed, ask questions like these and others that flow from your discussion:
   • What was it like to share your statement and hear people’s responses?
   • What surprised you?
   • How do these beliefs affect people with epilepsy in our community?
   • How do some of the beliefs promote epilepsy stigma, including self-stigma, interpersonal stigma, and institutional stigma?
   • What can we do to share helpful information that will reduce stigma?
   As you lead the group discussion, ask people to share examples of what happens when falsehoods are believed to be true. While we may not always be able to change a person’s beliefs, we can try to keep wrong information and harmful beliefs from hurting people with epilepsy. End the discussion by emphasizing that correct information protects people with epilepsy from injury, shame, isolation, and harm. Sharing correct information also promotes dignity, inclusion, and belonging.

Traditional healers can help end stigma

Traditional and faith healers help people stay healthy in all parts of the world. They offer hope and comfort, lead prayers and rituals, promote a sense of community, and, increasingly, encourage people to seek other forms of care when health problems are beyond what they can address.

Health workers may be distrustful of faith healers if they are unfamiliar with the herbs they use or traditions they carry on. They may worry about illnesses getting worse when medical treatment is postponed, and the cost of those treatments. In return, their distrust or opposition makes traditional healers even less likely to put any trust in modern medicine.

But when health workers begin to accept healers as trusted leaders in their communities, faith healers can be enlisted to get people with epilepsy help that can stop their seizures. By training traditional healers to recognize different types of seizures, learn seizure first aid, and bring people to medical settings where seizures can be treated, support for people with epilepsy grows. Traditional healers can be encouraged to use their influence by speaking out against the mistreatment of people with epilepsy, challenging stigma and discrimination.

Some religious leaders believe epilepsy comes from possession by evil spirits, curses, or sin which can be cured by prayer, and that if a person continues to have seizures, it is because they are not praying hard enough. This kind of blaming can cause stigma, fear, and isolation. While praying for healing may comfort the person, their seizures can be stopped by using antiseizure medicine. Even if you do not share the same religious beliefs, it is important to help religious leaders learn that epilepsy is a brain condition, not a spiritual problem.

Traditional healers and religious leaders depend on their communities for support, income, and respect. They may worry that sending people to clinics for treatment will undermine their role and the importance of spirituality in the community. But when collaboration is built slowly, with mutual recognition of the services that both health workers and spiritual guides provide to a community, it can be possible to find common ground and work for the benefit of all.

Recently, one of our temple priests began to refer patients with seizures to hospitals after learning about epilepsy. This helped shift community beliefs away from seeing epilepsy as a curse, and it encouraged people with other problems to seek medical care too.

Health workers can invite pastors and healers to trainings and make health visits to their homes or places of worship. As religious and traditional leaders understand that epilepsy is best treated medically, they can assert their leadership by making clinic referrals that lead to healing.

Concern for patients leads a faith healer to antiseizure medicine

Mtambo, a traditional healer in Malawi, uses herbs, prayer, and rituals to help people communicate with their ancestors and restore harmony in their lives. When people with seizures consulted him, he tried to help them expel the evil spirits or curses he believed caused their seizures. Some people improved, but others returned again and again with the same or worse problems, and that bothered him.

After visiting many different healers, a young man named Joseph sought out and prayed with Mtambo for help with his seizures. When his seizures continued, Joseph told Mtambo how he once used a daily medicine that stopped his seizures, but it was expensive and he could no longer afford to take it.

Mtambo became curious. He visited a clinic where a nurse explained how epilepsy works and how medicine can prevent seizures. After speaking with a patient about his experience with antiseizure medicine, Mtambo realized that medicine can help in situations where prayer cannot.

I tell people that prayer alone is not likely to stop their seizures—they need medicine for that.

Now, when people reveal they are having seizures, Mtambo listens closely, prays with them, then urges them to go to the clinic. He also encourages the clinic to travel to villages to hold epilepsy camps and make medicine more available.

This page was updated:19 May 2026