Teenager with Epilepsy: The Urge to Hide, Restrictions and the Search for Freedom

Why does a teenager with epilepsy hide their condition, and how do they cope with restrictions? Read about their feelings and how family and friends can help.

Picture a fifteen-year-old. Their friends are talking about a birthday party next weekend that will go on until past midnight, while the question running through their own mind is, "If I don't get enough sleep, will I have a seizure?" Nobody in the class knows why they sometimes sit on the sidelines in PE, and they do not want anyone to know. Being a teenager with epilepsy adds the feeling of "being different" and the uncertainty of "it could happen at any moment" to the already complicated emotions of adolescence. In this article I look at the inner world of young people entering adolescence with epilepsy, the reasons behind the wish to hide the condition, the tension between restrictions and freedom, and how family, friends and teachers can stand by them through this process. Medical questions and treatment decisions should always be discussed with the young person's neurologist; our focus here is the psychological weight of the illness.

What Does a Teenager with Epilepsy Feel?

Adolescence is a time when identity takes shape, when peers become more important than family and when the need for independence grows. When epilepsy lands right in the middle of this period, the young person finds themselves trying to grow up and be protected at the same time.

Many young people describe the following feelings:

• Fear of losing control. Not knowing when a seizure will come means not being able to trust one's body completely. This uncertainty quietly seeps into everyday plans.
• Shame. A young person who has had a seizure in front of others, in particular, may replay that moment in their mind over and over. The thought "Everyone saw me like that" may linger for a long time.
• Anger. The question "Why me?" is felt very intensely at this age. The anger is sometimes directed at the illness, sometimes at the parents, and sometimes at a sibling who has done nothing at all.
• Loneliness. When their friends' worries seem small to them and they cannot share their own with anyone, they can feel alone even in a crowd.
• Worry about the future. Questions such as "Will I be able to do these things?" arise around a driving licence, a career, university and living in student halls.

All of these feelings are understandable and legitimate. A young person who experiences them is not weak or ungrateful; they are someone carrying a heavy load at a time of growing up.

Why Is the Urge to Hide the Condition So Strong?

One of the most common situations for a teenager with epilepsy is hiding the condition from friends, sometimes even from close friends. Families often respond with, "Why are you embarrassed? There is nothing to be ashamed of." Yet there is usually more than shame behind the wish to hide.

Looking normal is a need

In adolescence, "being like everyone else" is almost a vital need. The young person wants to be seen not as someone defined by an illness, but as someone known for their taste in music, their jokes and the team they support. Hiding the condition is a way of protecting that identity.

The fear of stigma is a real fear

Misconceptions about epilepsy may still be widespread in society. Old and hurtful expressions, such as the idea that a person has been "struck by jinn", may have reached the young person's ears in some way. Even a classmate's joke can be enough to make them think, "If I tell them, they'll make fun of me."

Not wanting to be pitied

For many young people, being pitied is just as hard as being mocked. The "oh, poor thing" look can make them feel incomplete and fragile.

It is important to respect the wish to keep things private; however, for safety reasons some people may need to know. The aim here is not for the young person to tell everyone everything, but to make a decision, in which they take part, about whom to tell, how much and how. For example, the young person might choose to tell only their two closest friends and their PE teacher. This both protects their privacy and ensures that someone informed is nearby if a seizure happens. You can find the equivalent of the school process at younger ages in the article on a child with epilepsy at school.

Between Restrictions and Freedom: A Teenager with Epilepsy and Independence

For a teenager with epilepsy, one of the biggest tensions lies between safety measures and the need for independence. Sleep routines, screen time, swimming alone, staying out at night and going on a school trip can all become frequent topics of argument at home.

Which of these restrictions are truly necessary depends on the young person's situation and must be decided together with their doctor. Not every epilepsy is the same; a precaution that suits one young person may be unnecessary for another. Basing decisions on the recommendations of the young person's own treatment team, rather than on general prohibitions heard from relatives, neighbours or the internet, is both more accurate and fairer.

From a psychological point of view, what matters is that the rules are understandable and open to negotiation for the young person. A teenager who knows the reasoning behind a rule and is involved in the decision is far more willing to follow it. Conversely, an "I said no, and that's that" approach can lead them to break the rule secretly or to bottle up their anger.

In practical terms, the following can help:

• Making room at check-up appointments for the young person to speak with the doctor on their own for a few minutes.
• Asking together "how can we do this safely?" instead of saying "it's forbidden". For example, rather than not going on the school trip at all, making a plan in which the teacher is informed.
• Giving the young person the chance to gradually manage their own medication schedule, appointments and triggers.
• When the answer to an activity considered risky is no, thinking of something else that could take its place.

Independence is not handed over all at once; it grows step by step, through mutual trust.

Future plans and the question "Can I do it too?"

For young people of sixteen or seventeen, restrictions begin to concern not just today but the future as well. While their friends talk about driving lessons, the university in another city they will attend or the job they will do over the summer holidays, the young person wonders whether their own path is blocked. The medical answers to these questions vary from person to person and can only be given by the young person's doctor. What the family can do here is not brush these questions aside and, instead of saying "We'll think about that later", take the young person's worry seriously by saying, "Let's ask about that together at the next check-up."

Worry about the future is often experienced in an "all or nothing" way: "If I can't get a driving licence, I'll never be able to go anywhere", "If I can't live in halls, my university life is over." Gently testing these thoughts helps the young person see that the options are usually more varied than they assumed.

Social media and digital life

Today's young people largely maintain their friendships through their phones. Messaging, gaming and group chats that go on late into the night can create a particular challenge for a teenager who needs to pay attention to their sleep routine. Banning the phone entirely often cuts the young person off from their friendship group and makes them feel even lonelier. Instead, agreeing on a shared time for the evening and preparing a short sentence they can send to friends without having to give a reason, such as "I can't text after 11pm, I'll get back to you in the morning", may work better.

Some young people, on the other hand, feel less alone by following posts from other young people living with epilepsy on social media. This can be supportive; however, it is important to remind them that the medical information shared may not apply to everyone and that questions about their own treatment should be put to their doctor.

The Family's Attitude: What to Say and What Not to Say

For parents, seeing their child have a seizure is an extremely frightening experience. This fear often turns into an overprotective attitude. Watching the young person's every move and constantly asking "Have you taken your medication?" or "Are you tired?" comes from love, but the young person may perceive it as a lack of trust.

The sentences below are fictional examples.

Sentences that can help:

• "Whether or not you tell your friends about this is your decision. If you like, we can think together about how you might tell them."
• "I know this rule restricts you. Let's ask your doctor together how we could make it more flexible."
• "I'm scared, but that's my fear. I also want you to live your life."
• "If you feel bad today, you don't have to talk. I'm here."

Sentences that are better avoided:

• "We're all on edge because of you." This sentence loads the young person with guilt and the feeling of being a burden.
• "Other people's children go through worse, be thankful." It belittles the young person's feelings.
• "Don't tell anyone, it's shameful." It sends the message that the illness is something to be ashamed of.
• "You're ill anyway, you can't do that." It limits the young person's identity to the illness.

Siblings in the family should not be forgotten either. The attention given to the young person with the illness can create jealousy, anxiety or a feeling of invisibility in siblings. Making space for each child protects the overall balance of the family.

Friends, Teachers and the School Environment

For a teenager with epilepsy, school can be both the biggest source of worry and the most important area of support. For a young person preparing for the LGS or YKS (Turkey's national high-school and university entrance exams), exam stress, lack of sleep and an intense pace can be especially demanding; here too, a planned conversation with the doctor and the school counsellor is helpful.

A few suggestions for teachers:

• Not discussing the young person's condition in front of the class, and keeping the information limited to the people the young person and their family have approved.
• Behaving normally towards a young person returning to class after a seizure; showing too much attention or none at all can both draw notice. A brief "Welcome back, we'll go over where we left off together later" is enough.
• When misconceptions are voiced in class, giving general and accurate information without mentioning the young person's name.

There is also a simple but valuable attitude for friends: not making the young person's condition a subject of curiosity, not excluding them from activities and asking, "If something happens, what would you like me to do?" A friend saying "If you want to talk about it, I'll listen, and if you don't, that's fine too" helps the young person feel safe.

Epilepsy is part of a young person's life, but on its own it does not determine who they are.

When Should You Seek Professional Support?

In young people living with a chronic illness, anxiety and sadness can rise from time to time. This is natural. However, some signs suggest that seeing a mental health professional may be helpful:

• The young person completely withdrawing from friends for weeks and shutting themselves away in their room
• Refusing to go to school, or a marked drop in their grades
• Giving up activities they love altogether out of fear of having a seizure
• Deliberately skipping medication or refusing check-ups
• Marked changes in sleep and appetite, and constant expressions of hopelessness

Depressive symptoms can be overlooked in chronic illness; the article on depression in teenagers may offer guidance on this. It is also important to pass on changes in mood to the young person's neurologist; if considered necessary, an assessment by a psychiatrist can be arranged. If the young person says things like "I don't want to live" or "I wish I didn't exist", or shows signs of self-harm, never brush this aside; in an emergency, call 112 (emergency services) or go to the nearest emergency department.

How Is a Young Person with Epilepsy Supported in Therapy?

Therapy does not replace the medical treatment of epilepsy; it is support that runs alongside neurological follow-up. When working with adolescents, the basic principle is to create a safe space where the young person can hear their own voice and talk separately from their family.

Topics frequently worked on within cognitive behavioural therapy include:

• Noticing catastrophic scenarios related to the fear of seizures and testing them with more balanced thoughts
• Working on shame and thoughts such as "everyone saw me like that"
• Rehearsing together the sentences they will use about whom to tell and how
• Returning step by step to avoided activities, within the limits the doctor considers appropriate
• Focusing on areas the young person can control themselves, such as stress management and regular sleep

In sessions with the family, work can focus on finding the balance between overprotection and trust, seeing the needs of siblings and changing cycles of argument at home. Adolescent counselling offers a space where the young person can talk about their feelings regarding both the illness and the ordinary challenges of adolescence. For the broader aspects of the search for identity, you can also take a look at the article on identity in adolescence.

Frequently Asked Questions

Does a teenager with epilepsy have to tell their friends?

No, this is the young person's own decision. However, for safety reasons it may be helpful for at least a few trusted friends and the relevant teacher to know. Talking with the young person about whom to tell and how much protects both their privacy and their safety.

Our teenager isn't following the rules. Should we tighten the restrictions?

Tightening the rules often leads to them being broken in secret. First try to understand why the young person is not following them; then, together with the doctor, identify the precautions that are genuinely necessary and make a plan with clear reasons in which the young person also takes part.

They don't want to go back to school after a seizure. What can we do?

Returning to school can be hard for a young person who has had a seizure in class. Talking to the school counsellor, breaking the return into small steps and preparing a short answer together for their worry "What will I say if someone asks?" can help. If the avoidance goes on for weeks, professional support can be considered.

Does the illness affect the young person's personality?

Epilepsy itself does not determine who the young person is. However, the shame, restrictions and uncertainty that come with the illness can affect self-confidence and social relationships. These effects can ease with a supportive family environment and, when needed, psychological support.

• #epilepsy
• #adolescence
• #chronic illness
• #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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