Hesperian Health Guides
Chapter 5: Acting against epilepsy stigma
Contents
Understanding epilepsy stigma
When people do not understand what epilepsy is, they often feel afraid when someone has a seizure. The lack of clear, accurate information about epilepsy leads some to believe that seizures are contagious, or caused by evil spirits, curses, or as a punishment for wrongdoing. These negative beliefs are called stigma.
Epilepsy stigma leads to discrimination when someone is treated badly, unfairly, or as a less valuable person because they have epilepsy. People with epilepsy are often made fun of, denied support, kept hidden, or excluded from community life.
A person with epilepsy may be stopped from attending school, refused employment, or prevented from living in a certain place. Even health workers sometimes fear people with seizures or have harmful ideas about a seizureâs effects. Stigma in health care settings prevents people with epilepsy from receiving the care they need and may lead them to avoid seeking care altogether.
But when people come together to learn and share the truth about epilepsy, fear and harmful beliefs break down and are replaced with understanding. Families, health workers, teachers, and community members can create more inclusive environments to protect the rights of people with epilepsy.
Amaniâs story shows the range of reactions her family and community have when they find out she is having seizures. As everyone learns more about epilepsy, their responses change, and their fear gives way to efforts to help the child and her family get the treatment, care, and support that everyone deserves.
Amani and her epilepsy
Amani and her family were sharing their evening meal when Amani suddenly toppled backward on her chair. Her 8-year-old body stiffened, and her arms and legs jerked. Then she lay still on the floor. After a few moments, she woke up, confused. Her family was shocked. No one really understood what had just happened. Amaniâs mother Jeane thought that maybe an evil spirit had entered her daughterâs body, so she led her outside, lit a match, and told her to breathe in the smokeâthatâs how Jeaneâs own mother had taught her to drive spirits away.
Amaniâs seizures repeated several times over the next few months. The smoke from the matches didnât seem to help, but Jeane put off taking Amani to the local clinic because she believed that seizures meant a person was possessed. The grandmother convinced the family to keep the seizures secret out of fear that neighbors would stay away from the family if they found out.
To avoid rumors spreading, Amani was no longer allowed to play with her friends or go to school. Jeane worried it was her own fault that Amani was having seizures. As a young woman, Jeane had left her church and never went back. She now wondered if her daughter was paying the price.
At first, Amani liked staying home and helping her grandma while her parents went to work. But when she listened to her brother talk about his friends in school, she was quiet and felt sad. She watched other children play and wished she could join them. No one answered her when she asked why she kept falling and then waking up on the ground, so she thought it was her fault.
One day, while shopping in the town market, Jeane saw a shopkeeperâs daughter have a seizureâjust like Amani! The shopkeeper calmly moved a stack of pots and pans away from his daughter so she would not knock them over. After she woke up, he gently helped her sit and checked her for injuries. Jeane couldnât believe her eyes.
Jeane felt something she had not felt in a long timeâhope. But she knew she would have to convince the rest of the family to let Amani try to get help. Her mother-in-law thought they should continue to hide Amaniâs condition. So Jeane reminded her how a doctor gave her medicine for her swollen feet, which she had long believed was caused by bad luck.
Jeane was relieved when her mother-in-law gave her permission to take Amani to the clinic. But Jeaneâs husband Emmanuel worried the clinic might be too expensive. When Jeane showed him the money she had put aside by not sending Amani to school and said it might be enough, Emmanuel agreed.
The doctor at the clinic examined Amani and asked both her and Jeane a lot of questions. Then he explained that he thought the seizures were caused by epilepsyâa brain condition that cannot be cured but most of the time can be managed with medicine, or the child âgrows out of it.â He gave Jeane a bottle of pills and told her to give one to Amani at the same time every day. He showed Jeane how to keep Amani safe during a seizure and told her to also explain this to the rest of the family. Then he asked Jeane to bring Amani back in one month to see how she was doing.
When Amani started taking the medicine, her seizures stopped, but the medicine made her so sleepy she just wanted to lie in bed all day. No one told them this would happen! Jeane stopped giving Amani the pills to get her energy back, but her seizures came back too. The doctor told Jeane to take Amani to the capital city for treatment because there were no other medicines at their townâs clinic.
At the clinic in the city, Amani was given a different medicine with fewer side effects. Her seizures happened less often, and she began to smile and talk more. Eventually, Amani asked if she could go back to school, and Jeane and Emmanuel decided she was ready. But returning to class was not what Amani expected. On her second day, she had a seizure during lunch. The other children screamed, pointed at her, and ran away.
Amani was so upset she ran home from school and cried herself to sleep. The next day, she did not want to go to schoolâshe stayed home instead. Jeane went to talk to the principal. He listened uncomfortably to Jeane as she explained Amaniâs condition, but he insisted that Amani should be kept at home. The principal said the schoolâs policy was not to accept students like Amani. Again, Amani was stuck at home. She felt lonely and helpless.
Emmanuel faced problems at work too. When a coworker heard him mention that Amani had epilepsy, the man looked frightened and refused to join Emmanual for their crewâs regular noontime meal. Then, Emmanuelâs boss called him into the office.
Jeane and Emmanuel were hurt, angry, and unsure about what to do. They decided to ask for advice from the shopkeeper who had told Jeane about his daughterâs epilepsy. Jeane and Emmanuel shared their experiences and frustrations. The shopkeeper offered them tea and related the problems his family had faced due to peopleâs fear and lack of information about epilepsy.
The shopkeeper, Jeane, Emanuel, and a few other families began meeting one evening each week. They shared stories, supported each other, and planned ways to help people in the community learn about epilepsy. A nurse from the town clinic began visiting schools and larger workplaces to explain basic information about epilepsy and to offer seizure first aid training and other first aid instruction. After some initial resistance, their group was able to meet with school officials and town leaders to propose ways to prevent epilepsy stigma and discrimination in education and employment, and to answer questions. Slowly, over many months, things began to change.
The next year, Amani returned to school. She was relieved to find that the teachers and staff had learned about epilepsy and seizure first aid. A small room was set aside for Amani or anyone else who needed to recover from a seizure or another health issue. Amaniâs schoolmates now understood that epilepsy is a health condition that affects a personâs brain, not something to fear. Her old friends invited her to join their schoolyard games again.
After a community meeting on vaccinations, the doctor from the town clinic asked Emmanuel to share his familyâs story. Emmanuel stood beside Jeane and, for the first time, said the word âepilepsyâ in front of a group of people. Everyone clapped when he finished speaking. Amani grinned in the front row, holding her grandmaâs hand. She felt nervous... and proud
Three types of stigma
Amaniâs story highlights three types of stigma.
Self-stigma can make a person with epilepsy:
- blame or shame themself for their condition.
- feel alone, anxious, worthless, depressed, hopeless.
- hide or lie about their epilepsy to others, including not getting medical care.
- limit what they do and not develop their abilities or friendships.
Amaniâs self-stigma made her hate feeling âdifferentâ from other children. She blamed herself for her seizures and felt ashamed for having them.
Interpersonal stigma can make others treat a person with epilepsy:
- as less capable or valuable than other people.
- like they should not participate in group activities, not develop social relationships, and not be recognized as community members.
- as if they should not and cannot lead a full and rewarding life.
Despite their love for her, Amaniâs family showed interpersonal stigma by stopping her from playing with her friends, attending school, and getting medical help, and by worrying about how epilepsy would reflect on the familyâs community acceptance. Amaniâs teachers showed interpersonal stigma by sharing their fears of epilepsy with each other. Emmanuelâs coworkers showed interpersonal stigma when they refused to eat lunch with him.
Institutional stigma harms people with epilepsy when:
- education, employment, marriage, and housing policies and laws discriminate against people with epilepsy and their families.
- health workers are not trained on how to support and treat people with epilepsy and seizures.
- medical systems do not provide access to trained health professionals and safe and affordable antiseizure medicines.
Amani and her family faced institutional stigma when the school principal enforced a policy banning children with epilepsy from attending school, and when Emmanuelâs boss threatened to fire him for talking about epilepsy at work.
The three forms of epilepsy stigma are connected and often interact to make stigma worse. For example, a person with epilepsy may feel self-stigma as shame about their condition. When people around them share and spread harmful beliefs about epilepsyâthat it is a limitation on what a person can achieve or a curseâthis interpersonal stigma increases the self-stigma the person already feels. When neighbors, teachers, or employers discriminate against the person with epilepsy by creating policies or rules that prohibit them from attending school or working, this is institutional stigma. Where institutional stigma is in place, community members feel justified in their mistreatment of people with epilepsy, and the person with epilepsy feels worse about themself.
Stigma takes on a life of its own
Epilepsy stigma is not always intentional. A lack of information or understanding can cause people to treat someone with epilepsy poorly just because that is the way they have learned to behave. This is why education about epilepsy can make such a difference. When people learn their fears of epilepsy are unfounded, they are often willing, even eager, to make changes. Most people do not want to cause harm.
When laws or traditions prevent people with epilepsy from living as they want to, with the same rights and opportunities that everyone else has, it forces them to hide their epilepsy. A community where epilepsy stigma imposes limits is telling people with epilepsy they are less deserving and they are a problem for their neighbors.
Stigma also threatens the overall health of the community. When people with epilepsy are denied access to health care or made to feel too uncomfortable to seek it, they are less likely to get care for whatever other health issues they may develop, including ones that could spread and make others ill.
Identifying epilepsy stigma
Like everyone else, people with epilepsy can develop a broad range of talents, skills, and experiences that can improve a communityâif they do not live behind a wall of stigma. Understanding the different types of stigma can help you think about how to reduce its effects. While a person with epilepsy feels the effects of stigma most strongly, it is everyoneâs responsibility to oppose the harm it causes.
Just as self-stigma, interpersonal stigma, and institutional stigma are interrelated, acting against them is interrelated too. Increasing support, raising awareness, and challenging stigma happen in our hearts and minds, in our families and communities, in our schools and workplaces, and in our laws and national policies. People with epilepsy have a right to live free of stigma and discrimination, and the more people we can involve, the closer we will be to achieving this.
Activity
Seeing epilepsy stigma in daily life
Recognizing ways in which the three types of stigma cause harm is an important step in acting to stop it. Making and looking at simple drawings can point out epilepsy stigma in daily life that we might not otherwise see.
- Form small groups
Divide people into groups of 2 or 3, and give each group paper and markers. If the group prefers not to draw, ask them to act out their scenes. - Read the descriptions and draw (or act) Ask for volunteers to take taking turns reading the sample descriptions out loud (see below), then ask each group to choose 1 or 2 descriptions to draw or act out. They can also draw or act scenes from their own experiences. Allow the groups time to draw or practice acting out scenes like these:
- Share and discuss
When all the small groups are finished, have them show their pictures or act out their scenes to the entire group. Ask them to describe:- what is happening in the picture or scene.
- how the picture or scene shows epilepsy stigma.
- Talk about stigma in your community
Close the activity by inviting the group to talk about how stigma happens in their community and how they can challenge it. Here are some questions that can help get the conversation going:- What examples of epilepsy stigma have you have experienced or seen?
- How does stigma affect your life?
- How does silence and lack of information increase stigma?
- What are some ways we can begin to talk more openly and challenge stigma?
Women and girls face stronger stigma
In all communities, girls and women with epilepsy face different and stronger stigma than men. The stigma of having a feared or overlooked health condition becomes more intense as it interacts with gender discrimination. Where women are treated as second-class citizens, epilepsy stigma can further lower their self-esteem and confidence. These challenges are even worse for women with disabilities and those from minority groups.
Marriage and family life. On top of facing discrimination and exclusion in education or work due to their gender, women with epilepsy are often considered unfit to be wives and mothers. Some women are forced to use contraception out of fear their condition will be passed on, so they are denied the right to have children. Families may try to hide a daughterâs epilepsy, especially during marriage arrangements. If she does marry, her husband and in-laws may see her as a âburden,â âcursed,â or âdishonestâ for concealing her illness, often leading to rejection or divorce. If her marriage ends, a woman with epilepsy is more likely to lose custody of her children.
Abuse and assault. A woman with epilepsy is at higher risk for neglect and abuse by family members. Women and girls have also reported finding themselves being groped or sexually assaulted by strangers or health providers as they recover from seizures.
Dignity and respect. Self-stigma among women with epilepsy can be especially harmful. Just as women are taught to devalue themselves due to their gender, a woman may believe incorrect information she has been told about epilepsy, for example, that she should not have children or breastfeed because seizures are contagious, or that her epilepsy prevents her from caring for others. This may make her feel unworthy of respect and likely to accept unjust treatment from her family and the community.
Community life and support. Gender inequality may allow a husband or other family member to restrict a womanâs movements and prevent her from attending public events. This can make it harder for women with epilepsy to work or to participate in support groups or other activities that challenge stigma, either in the community or online.
It is usually easier for men to access epilepsy information and support groups online because they generally work outside the home and are more likely able to afford devices and data. Many women do not have paying jobs and must rely on the men in their families for mobile phones and internet connections.
Gender discrimination makes it more difficult for women and girls to talk openly about their epilepsy, find support, and become involved in community actions against stigma, but many people face additional barriers in lessening the effects of stigma on their lives. Poverty, racism, religious bigotry, homophobia, and other beliefs that divide our communities can make seeking support sometimes feel impossible. Make a conscious effort to overcome those divisions so your outreach and programs include everyone in the community.