Fighting stigma with support groups

When epilepsy is ignored in a family, in communities, or in larger society, it sends the messages that epilepsy should be hidden and that people who have epilepsy are not worthy of care and attention. A person living with epilepsy may have internalized these messages and withdrawn from family and community, due to self-stigma.

Epilepsy support groups provide a space for people with epilepsy to learn more about their own epilepsy, grow more comfortable talking about it, and form meaningful and supportive friendships with others who have it. Support groups can become a base from which people with epilepsy and their families can spread awareness throughout a community. They play a central role in reducing stigma.

When someone speaks about their experiences with epilepsy and stigma, it can help others think about their own situation. For example, when a person with epilepsy—or the parent of a young child who has severe epilepsy—describes what it feels like to be left out of community life and how they have handled it, others who face the same challenges may feel less alone and find some new ideas that help them. For the person sharing, talking openly about epilepsy can bring relief and validation, and help them become more confident in managing and living with the condition.

As you and others share your experiences of challenges, you can identify possible solutions together.

Support groups help people with epilepsy:

Recognize and allow feelings. We often hide our feelings or do not even admit we have them because we may think feelings are bad, shameful, or a sign of weakness. In some families or cultures, people tend to ignore feelings rather than talk about them. Hearing others talk about their feelings can help us recognize and become comfortable with our own.

I felt so much shame and inner pain, I could never find the words for it. My epilepsy group showed me I was not alone and helped me see that the seizures are not my fault.

Get support.' Feeling bad about your epilepsy, or that of a family member, can leave you drained and discouraged. Meeting as a group can spark energy and ideas, helping everyone cope with daily problems and mental health challenges. Group members can also check in with each other between meetings.

Understand the causes of problems. Talking together helps people realize that we share problems that need a common solution. Identifying causes of epilepsy stigma stops us from blaming ourselves.

Share good information. A support group can help find and share resources about epilepsy. This can reduce stigma that people may be facing. Guest speakers from health organizations or epilepsy support networks can visit to share useful and accurate medical information.

I look forward to hearing the university doctor who talks every other month about new research in epilepsy. It might not help me now, but it does give me hope.

Recognize strengths. Support groups provide spaces where we can celebrate each other’s strengths and remind each other that we have successfully overcome challenges before. Ask the group: “What did you do well that helped you oppose stigma?”

Build power together. Acting together is always more powerful than acting alone. When a group identifies ways to reduce stigma in the community, knowing that some or all of the group members can work together makes fixing it feel more possible.

At first, I felt nervous talking about my seizures in the group. But I realized no one was judging me. That made me feel lighter, as if the weight of stigma was lifted off my shoulders.

Plan in advance. Try to set the dates for your meetings in advance to make sure people can plan to attend. Consider planning and letting people know of the agenda too. Knowing what to expect may help group members come ready to participate with thoughts, questions, or information related to what will be discussed.

Set group agreements. Decide on basic rules before you begin meeting so everyone feels comfortable participating and sharing. To create a space where people can speak openly, one basic rule might be to keep group discussions private. Other agreements might cover taking turns running meetings, giving everyone a chance to speak, listening and not interrupting, avoiding judging people or telling them what to do, and a commitment to starting meetings on time. The group may also want to encourage honest communication, humility, kindness, and respect.

I’m so glad I have this place to talk with people I trust.

The group can develop a list of agreements and refer to it when needed Check in occasionally to see if any adjustments or additions are needed

Beginning a meeting. Beginning each meeting in the same way can help people shift from their previous activities to join in common purpose. Try different ways to start the meeting so the group can decide what they like best. Some groups start with an “ice breaker” exercise or have each person respond to a prompt—for example, “Say something you are grateful for.” Other groups start with a prayer or song, or by spending a few quiet moments to “reset” by writing or drawing their thoughts on “How I feel right now.” If meetings begin with each person checking in about how they are feeling, it may become clear that someone needs special attention that day.

Decide what you hope to do. Choose your main topics. Give everyone a chance to express what they would like to get from the group: a chance to talk about feelings, share ideas about facing stigma, learn techniques to manage epilepsy and seizures, and other things. Try to keep expectations realistic. Support groups can be helpful in many ways, but they will not fix everything for everyone all the time.

Encouraging participation in a group

Group discussions work best when everyone participates fully and equally, even if this does not come naturally. Try to draw people out and help everyone feel their ideas are valuable and worth sharing. This is especially important when people have been made to feel shame about their epilepsy. Here are some ways to make your group a place where people want to spend time.

Be a good listener. Show interest in what people say. It may help both individuals and the group if you briefly echo the main point of what a person said so they know they have been understood. Then invite the next person to speak.

When I’m leading the group and someone says something that does not make sense to me, instead of correcting them, I ask: “Can you say more about why you believe that?” or “Can you explain more about those feelings?” I think this helps all of us understand them better.

Use a “talking stick” to take turns Use a seashell, stone, feather, or other object that has meaning for your group. When someone holds the object, everyone else listens and does not interrupt them. If the object comes to a person who does not wish to speak, they pass it to the next person.

Give people a moment to prepare their thoughts before starting a discussion. This helps people prepare and feel more confident to speak. Do not be afraid of silence during a group. It can be a sign of group members taking time to feel what they are feeling rather than nervously filling the silence.

Be aware of people who are quiet or shy. Some people need more time to feel comfortable sharing. You can make participation easier, for example, by going around the circle and giving everyone a turn to speak. Or you might ask people to write questions or comments anonymously and then read them out loud without saying who wrote what.

In a support group, unlearning and new learning can happen, and action can follow!

Make small groups. Discuss issues in groups of 2 or 3 people, then have them report back to the larger group. People often feel more comfortable speaking with only one other person or reporting on a group opinion rather than stating their own.

Welcome emotions. Gently encourage people to openly express what they are feeling, recognizing that not all members of the group may feel comfortable opening up. Assure the group that strong feelings and tears are not a problem. Have tissues available and be ready to offer support if needed (see “How to support a person in distress”).

Aim for a balance of voices. Consider using terms like “step up” to encourage people who usually speak less and “step back” for those who tend to talk more, to help make participation equal. Find kind but direct ways to ask people to step up or step back such as: “Thanks for adding that. Would someone we haven’t heard from like to go next?”

Keep the conversation on topic. If someone strays from the topic, first acknowledge their input (for example: “That’s a good point.”) and then invite them to relate what they were saying to the topic at hand (for example: “How does that affect your anxiety about your epilepsy at work?”).

Address conflict. If conflict arises, encourage people to share their thoughts without interrupting, and remind the group that everyone is there to support one another. Use simple, clear language, and try to find shared understandings to guide the discussion so it stays focused and respectful. If needed, take a break and return to the discussion later. Solving conflict together can help a group grow stronger and more united.

How to support a person in distress

Support group discussions can stir deep feelings, whatever the topic. When a person with epilepsy speaks about experiences of stigma, they may get very emotional. The group can help the person acknowledge, accept, and manage their feelings. Here are some ways a facilitator and group members can offer support:

If a person is overcome with emotion and unable to continue speaking, say something like, “It’s OK, please take the time you need. We’re here for you.”
Ask the person if they would like you to sit close to them and if they are comfortable with you gently placing your hand on their back. Follow their lead on physical contact. For some people, it can be grounding and reassuring. For others, if may feel uncomfortable.
When a person begins to cry, remind everyone that tears are not a problem or something to be embarrassed about. Have tissues or soft cloths on-hand. Allow them some time and then offer a glass of water.
If they are unable to recover in the group, invite the person to take a “time out” and talk privately with them to find out what might help. They may want to hear supportive thoughts from others, receive hugs, or sit quietly for a while on their own.
For those remaining in the group, ask for a volunteer to continue leading the discussion and suggest that everyone move to a new place in the circle. This will literally change their point of view and can “reset” the group.

When the person in distress feels ready to rejoin the group, let everyone know what they said would be supportive and ask that people limit their responses to that. Ask if someone is willing to lead a breathing exercise or a song to unify the group. Then, allow the meeting to move on naturally, discussing the topic at hand.

I used to feel so embarrassed when I cried in the group. Now people just accept that’s who I am.

Know yourself as a facilitator

Helping to lead our group has increased my confidence that I can overcome challenges. People in my community will soon see that epilepsy is not the end of my life!

When starting a support group or leading an educational activity, it helps to be aware of how your comfort talking about epilepsy developed. Ask yourself: “What made me feel shame about my epilepsy and what did I want to keep secret? How can I encourage others to speak about their feelings?” Also, be aware of how people in the group may see you. Perhaps some women will have a hard time trusting men, or it will feel uncomfortable to have a person of one racial, religious, or cultural background being guided by someone of another background. For more information on leading support groups, see Chapter 8 of Hesperian’s Promoting Community Mental Health.

Making the internet a space for epilepsy support

Ivana began having absence seizures when she was 13. Her parents noticed she would “zone out” and briefly stop responding, but none of her doctors could explain it. They gave Ivana a medicine that reduced the episodes, and her mother made sure she took it every day, but no one explained why she needed it.

When I finally found out I have epilepsy, I wanted to talk about it, not hide it!

Not understanding what was happening made life confusing for Ivana. One summer when Ivana was away at a school camp, her mother called the organizers to remind them to give her the medicine. They made an announcement over the loudspeaker, which embarrassed Ivana in front of everyone. Her friends asked why she needed medicine and if she was sick. Ivana had no answers.

At 21, Ivana had her first tonic-clonic seizure. Her parents were scared and unprepared. They tried to stop the seizure in unsafe ways, like putting something in her mouth and trying to hold her still. Then they rushed her to a clinic where a doctor finally explained: Ivana had epilepsy.

Knowing she had epilepsy changed everything for Ivana. The uncertainty, mystery, and fear all fell away. The stigma that had prevented Ivana, her family, and her health providers from learning or speaking about epilepsy could now be replaced with understanding, care, and support.

Most of her suffering isn’t from epilepsy, it’s from stigma! Enough is enough! I must do something...

Ivana began volunteering at epilepsy awareness events and meeting others who lived with epilepsy and stigma. One day, she met an unhappy teenage girl with epilepsy whose family helped her with medicine and checkups but refused to talk to her about her condition.

Ivana started a Facebook group called Espacio Epilepsia—a space for Spanish-speaking people with epilepsy to find support, information, and community. She began by inviting family and friends to join. As members encouraged others to participate, people with epilepsy from all over the world found the group.

Ivana posts interviews with health workers and people with epilepsy on Espacio Epilepsia. Her short, clear messages, images, and memes make learning about epilepsy easier, and sometimes even funny.

As the group grew, Ivana listened to members. Parents wanted to know about medicines. Students wanted advice and complained about school. Now, Ivana goes everywhere people with epilepsy gather online—Facebook, Instagram, and newer platforms. She asks what topics they want to discuss and makes space for new conversations to begin and go wherever they will.

Epilepsy is complicated. Visuals help explain it. Humor helps make it feel less scary. The goal is for someone to feel okay saying, “I have epilepsy.”

Safety and privacy online

Online spaces can make it easier for people with epilepsy to talk openly about their lives and feelings. These communities can offer support and health information. For people with access to the internet, online networks provide a way to connect and create friendships with others who share similar experiences.

However, some online groups can feel bad instead of helpful. If a group makes you feel unsafe or uncomfortable, it is not your fault and it is probably not a place worth visiting. Just as in offline spaces, people online can say unkind things, respond judgmentally, or share misinformation. They can express the same attitudes and prejudices that would make you avoid them in person.

Here are some ways to try to maintain online and digital safety and privacy:

Manage your privacy. Adjust the privacy settings on social media and online platforms to limit who can see your posts and personal information. Go slow about sharing personal details online. After joining a group, spend some time seeing how group members interact before you begin to participate.

Protect your personal information. Decide if you want to use your first name only or a different name for your online interactions. Online communities often feel more anonymous than they really are. Think carefully before you share photos or information about where you live, work, go to school, etc.

Join moderated groups. Check if the online group has safety rules about connecting with other members and has group moderators or support teams. These can reduce the risk for abuse and bullying by providing ways to report harmful behavior. If someone online is abusive, report them, to protect both yourself and others.

Fact-check health information. Do not immediately believe information you find online. Be curious and ask questions. Look elsewhere online to see if other sources provide the same information, and talk to other people with epilepsy or a health worker, to check if information is accurate.

Avoid seizure triggers. Try not to expose yourself to screen-related seizure triggers, such as flashing images or videos, bright and contrasting colors, or fast-moving animations. Reduce the brightness on your smartphone or computer and take regular breaks from screen use.

Trust your feelings. If something about a group feels strange, “off,” unsafe, or just somehow not good or not able to meet your needs, you can leave or take some time away from it. Try looking for support in a different online group or locally in your community rather than online.

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This page was updated:19 May 2026

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