Child with Epilepsy at School: Fear of Seizures, Stigma and Working with the Teacher

What does a child with epilepsy at school go through? Read about seizure fear, peer stigma, teacher cooperation and words that protect confidence.

In the morning the school bus pulls up at the door, and your child swings their bag onto their back and waves goodbye; you, meanwhile, stay at the window for a while even after the door has closed. A single question keeps turning in your mind: "What if they have a seizure in class today?" A child with epilepsy at school faces not only a health matter but also the looks of classmates, the attitude of the teacher and their own inner sense of "I'm different". As a parent, your worry is every bit as real as theirs. In this article I look at what a child diagnosed with epilepsy may go through psychologically at school, and at which words and attitudes from family and teachers give them strength and which ones unintentionally leave them isolated. All decisions about medical treatment and seizure management belong to the doctor who follows your child; our focus here is the emotional world of the child and the family.

How Does a Child with Epilepsy Feel at School?

Epilepsy is a condition in which a child often looks completely healthy yet lives with the knowledge that a seizure could come at any moment. This "invisibility" makes school life distinctive. Whether they are running around at break time or going up to the board in a maths lesson, the child may carry a question in a corner of their mind.

In many children the following feelings stand out:

• Fear of an unpredictable seizure. The thought "What happens if it happens in front of everyone?" is especially marked in children who have already had a seizure in class.
• Shame and embarrassment. Not remembering what happened during a seizure, and then seeing the expressions on classmates' faces afterwards, can affect a child deeply.
• The discomfort of being treated differently. Being excused from PE, being unable to go on trips or constantly being asked "Are you OK?" can make the child feel fragile.
• Fatigue and difficulty concentrating. After a seizure, or during treatment, the child may tire more quickly and find it hard to focus. This can lead to unfair labels such as "lazy" or "not interested in lessons".
• The wish to hide it. Some children, especially as they grow older, want nobody to know about their condition. This wish is understandable, but a secret carried alone can also become a burden.

All of these feelings are a child's effort to cope with a difficult situation. They are not "exaggeration" or "making a fuss". For the wider psychological weight of living with a long-term condition, you may also want to read the article on the psychology of chronic illness.

How Does the School Experience Change with Age?

A child in preschool or the first years of primary school usually understands epilepsy in simple language, such as "sometimes my head goes funny and I fall asleep". At this age the child's greatest worry is often that something bad will happen at a moment when they are away from their mother or father. A calm, familiar and reassuring teacher is the most important protective factor for a child of this age.

Towards the end of primary school and into middle school, peer relationships come to the fore. The child now cares much more about what friends think. Sentences such as "They look at me strangely" or "They didn't invite me to the birthday party" are heard more often in this period. As exam periods such as the LGS (Turkey's national high-school entrance exam) approach, lack of sleep, stress and an intense study schedule may increase the family's anxiety; talking with the doctor about exam preparation and daily routine during this time can ease both the family's and the child's minds.

In adolescence, questions of identity, independence and appearance come into play. The young person wants to decide for themselves who knows what about their condition. I give the experiences of this age group their own space in a separate article; here we will focus mainly on school-age children.

Child with Epilepsy at School: Stigma and Peer Reactions

For centuries epilepsy has been surrounded by mistaken beliefs. Even today some adults and children may think a seizure is something frightening, mysterious or even "contagious". This misinformation lays the ground for a child being stigmatised at school.

Peer reactions usually stem not from ill will but from lack of knowledge and from fear. A child who witnesses a seizure in class may be frightened because they do not understand what happened, may go home and tell their family, and may behave distantly the next day. Sometimes more hurtful behaviour appears too, such as mocking, imitating or name-calling. In such situations it is important for the school and the family to act together; if mocking or exclusion continues, it should be addressed within the framework of peer bullying.

A simple, age-appropriate explanation to the class often reduces stigma. The child can also take part in deciding how this is done. Some children want to tell the class themselves, some prefer their teacher to explain, and some would rather it were not discussed at all. The child's voice must be heard in this decision; but it should also be explained to them, in language suited to their age, that keeping it completely secret can have costs both for safety and emotionally.

The Family's Worry: Between Protecting and Restricting

For a mother or father, seeing their child have a seizure is an extremely shaking experience. The image of that moment can stay in the mind and come back to life every time the child is out of sight. This is why many families, without realising it, begin to narrow the child's life: not allowing school trips, not letting them go to a friend's house, worrying about them running at break time.

The need for protection is real, and of course the safety measures the doctor specifies should be followed. But restrictions without a medical reason can indirectly give the child the message "You are fragile; the world is dangerous for you". Over time the child takes this message on board and starts avoiding new situations. To notice this cycle, it can help to ask yourself, "Did the doctor recommend this restriction, or is it my fear?"

Let us say a family does not know whether their child can join a class trip. The healthiest thing to do here is not to decide alone on the basis of their own anxiety, but to take the question to the doctor and then talk with the teacher about which precautions can be put in place. That way the decision rests on information rather than fear.

It also matters for the family to recognise their own anxiety. When an anxious parent reels off a long list at the door in the morning, "Be careful, tell your teacher straight away if anything happens, don't you dare run", the child starts the day carrying that worry on their back. A short, reassuring goodbye is often more protective.

In many families in Turkey, worry is not limited to the parents. Grandmothers, aunts or neighbours may add to the pressure on the family with remarks like "How can you send this child to school?" or "If it were me, I'd keep them at home". These remarks usually come from love, but they lead the parent to question their decisions constantly. In such cases a short, clear explanation to the extended family can help: "We've spoken to our doctor and made a plan with the school. We want them to have a normal childhood." Siblings should not be forgotten either; they also sense the worry moving around the home and sometimes hold back from voicing their own needs.

How Do You Build Cooperation with the Teacher and the School?

The teacher is perhaps the most decisive person in the school life of a child with epilepsy. Their calm and accepting attitude also shapes the attitude of the rest of the class. A few steps can help build this cooperation:

• Meet face to face. Sitting down with the teacher and the school management at the start of September, or if possible before term begins, lets you set up the relationship properly from the outset.
• Share the doctor's written plan. What to do during a seizure, whom to call and in which situations to call for emergency help should be available in writing at school, in line with the recommendations of the doctor who follows your child. On this, act on the doctor's guidance rather than your own guesses.
• Describe how your child is before and after a seizure. Some children experience a warning feeling before a seizure; some remain tired and confused for a long time afterwards. When the teacher knows this, they can approach the child with more understanding.
• Ask for academic flexibility. Small adjustments, such as extending homework deadlines on tired days or support for missed lessons, protect the child's progress at school.
• Agree on the limits of confidentiality. Decide together which information is shared with whom. People such as the school bus driver, the PE teacher and the teachers on duty may also need basic information.

A note for teachers: the most valuable thing you can do for a child returning to class after a seizure is to bring them back into the flow of the class without making a big deal of what happened. A short, calm explanation can also be given to the class, such as "Your friend is fine and resting now. All of us can go through different things sometimes."

What to Say and What Not to Say

The sentences below are fictional examples. The aim is not to memorise them but to carry the attitude in them into your own words.

Things you can say to your child

• "The seizure isn't your fault. Sometimes the electrical signals in your brain get mixed up, that's all."
• "If something happens at school, your teacher knows what to do. You're not alone."
• "Would you like to tell your friends, or shall we keep it between us for now? Let's think about it together."
• "If you feel tired today, it's completely normal to say so."

Words it is better to avoid

• "Don't you dare tell anyone." This sentence turns the condition into something to be ashamed of.
• "I'm never sending you on a trip again, what if something happens." It passes the anxiety on to the child and pulls them away from social life.
• "You're ill, you can't do it." It leads the child to define themselves by their condition.
• "You didn't have a seizure today, well done." Even if said with good intentions, it makes the seizure seem to be under the child's control; on a day when they do have a seizure, they may feel they have failed.

Examples for teachers and classmates

A sentence a teacher might say in class, such as "Everyone's body works differently. Learning how we can help our friend makes us a better class", steers curiosity towards understanding rather than fear. By contrast, a phrase such as "Be careful around him, he's ill" instantly separates the child from the rest of the class.

What a child with epilepsy needs most at school is people who remind them that they have an identity far bigger than their seizures.

When Should You Seek Professional Support?

It is to be expected that worry, sadness or reluctance will come up from time to time during the school year. However, some signs suggest that the child or the family may benefit from psychological support:

• The child not wanting to go to school for weeks, with complaints such as stomach aches or headaches increasing in the mornings
• Noticeably withdrawing from friends and preferring to be alone at break time
• Marked changes in sleep, appetite or behaviour
• Statements such as "I'm not normal" or "Nobody wants to play with me" becoming more frequent
• Anxiety coming to rule daily life in the family, with parents unable to sleep or constantly on high alert

Emotional symptoms can sometimes become intertwined with the medical picture. For this reason, it is important to discuss newly emerging changes in behaviour or mood first with the doctor who follows your child and, if necessary, to ask for an assessment by a child psychiatrist. If your child talks about harming themselves or says they are tired of living, do not put it off; in an emergency call 112 (emergency services) or go to the nearest emergency department.

How Is Therapy Used with a Child with Epilepsy and Their Family?

Psychological support does not replace the medical treatment of epilepsy, but it can help the child grow up confidently alongside their condition. When working with young children, tools such as play, drawing and stories are used. A child can express their fear of seizures, or a moment of shame they experienced at school, through dolls, puppets or drawings. Child and play therapy opens up a safe space for these feelings that are hard to put into words.

With school-age children, age-adapted techniques from the cognitive behavioural approach can also be used: noticing anxious thoughts, questioning catastrophic scenarios such as "Everyone will laugh at me", rehearsing what to say to friends, and returning step by step to avoided activities to the extent the doctor approves are some of these.

In sessions with the family, the focus is on parents recognising their own anxiety, developing a language that reassures the child, and making sure siblings are seen during this process too. Where needed, and with the family's permission, cooperation with the school can help the teacher adopt an approach that supports the child.

Frequently Asked Questions

Can a child with epilepsy take part in PE lessons at school?

The answer differs for every child, and the decision is made by the doctor who follows your child. From a psychological point of view, if there is no medical obstacle, taking part in lessons and games as much as possible helps the child feel an equal part of the class.

Should I tell the parents of my child's classmates about their epilepsy?

This is a decision for the family and, where possible, the child to make together. Some families prefer to give a short explanation at a class parents' meeting; others share it only with the school. What matters is that the information is shared in a way that respects the child's privacy and reduces stigma.

What should I do if my child doesn't want to go back to school after a seizure?

This worry is very understandable. Listening to what the child feels, planning the day of return with the teacher in advance and keeping the first days short can all help. If the reluctance lasts for weeks, support from a mental health professional may be useful.

Does epilepsy affect a child's school performance?

In some children, fatigue, difficulty concentrating or missed lessons can affect school performance; in others no marked effect is seen. If you suspect any learning difficulty, discussing it with the doctor and the school's guidance service makes it easier to plan support according to the child's needs.

• #epilepsy
• #school
• #child psychology
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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