Explaining Narcolepsy to Siblings: A Guide for Parents

Narcolepsy can be tricky for adults to understand. It can be even harder for kids. If your child has narcolepsy, their siblings might have lots of questions. They might also feel confused or even a little scared.

What is narcolepsy?

Narcolepsy is a brain disorder that affects how the brain controls sleep and waking. People with narcolepsy can feel very tired during the day. They may fall asleep suddenly, even when they do not want to. These sleep attacks can happen at any time. They can occur during play, at school, or even while eating.¹

Narcolepsy also can cause other symptoms. Sometimes, a person’s muscles may become very weak. This may happen with strong emotions like laughter or excitement. This symptom is called cataplexy. Some people also might see things that are not there when they are falling asleep or waking up. These are called hallucinations.¹

Sometimes, people with narcolepsy have trouble staying awake for long periods. They may also have trouble sleeping well at night.¹

Talking to your children about narcolepsy

When it comes to chronic conditions like pediatric narcolepsy, honest and open communication is key. Choose a quiet time when you can all sit down together. Explain narcolepsy in simple terms. Use language your children will understand.^2,3

• Be honest. Do not try to hide anything about narcolepsy. Explain that it is a real medical condition that can be treated and managed.
• Keep it simple. Avoid using complicated medical words. Explain that their sibling’s brain works a little differently. This difference makes them feel very sleepy sometimes.
• Use examples. Explain that sometimes their sibling might fall asleep during a game or a meal. This is not because they are being lazy or trying to be difficult. It is because of their narcolepsy.
• Encourage questions. Let your children know it is okay to ask questions. They might be curious about sleep attacks. They might worry about their sibling. Answer their questions patiently and truthfully.
• Address their feelings. Your children might feel confused, scared, or even resentful. Acknowledge their feelings. Let them know it is okay to feel however they feel.

How siblings can help

After you have explained narcolepsy, tell siblings how they can help. Here are some suggestions you can make to your other children:^2,3

• Be understanding. Your brother cannot control his sleep attacks, and he is not doing it on purpose. Show him you understand why he has sleep attacks.
• Be patient. Sometimes, plans might need to change because of your sister’s narcolepsy. Be patient and flexible with her.
• Offer support. If your brother is having a hard time, offer him a comforting word or a hug.
• Include them. Even if your sister sometimes needs to rest, try to include her in activities.
• Learn together. Read books or websites about narcolepsy with the family. This can help everyone understand the condition better.

Creating a supportive family environment

A supportive family environment is essential for a child with narcolepsy and their siblings. Here are some tips:^2,3

• Maintain routines. Regular bedtimes and mealtimes can be helpful for everyone. This can be especially important for a child with narcolepsy.
• Be flexible. Narcolepsy can make it hard to stick to a schedule sometimes. Be prepared to be flexible.
• Communicate openly. Continue to talk about narcolepsy as a family. Encourage everyone to share their feelings and concerns.
• Seek support. Support groups for families of children with narcolepsy can provide valuable information and support. Your doctor also can help you find resources.



• Celebrate successes. Acknowledge and celebrate your child’s accomplishments. This will help build their self-esteem.
• Individual time. Make sure each child gets 1-on-1 attention. This is important even when 1 child needs extra care. For each child, set aside special time to do things they enjoy.

Give it time

Explaining narcolepsy to siblings takes time and patience. By being honest, open, and supportive, you can help your children understand this condition. You can also create a loving and supportive family environment where everyone feels valued and understood. This will help your child with narcolepsy thrive. It will also help your other children develop empathy and compassion.^2,3