How to Explain Hydrocephalus to Your Teachers and Friends

High school is full of opportunities to connect with others, explore your interests, and learn new things. If you’re living with hydrocephalus, you may find yourself needing to explain your condition to teachers, friends, or even teammates. While this can feel challenging, sharing the right amount of information in a way that’s comfortable for you can help others better understand what you’re going through and how to support you.

Below are some tips and tools to help you explain hydrocephalus to your teachers and friends.

Start with the Basics

Keep it simple when explaining the condition, for example, you can say:

“Hydrocephalus is a condition where extra fluid builds up in my brain. It’s something I’ve had to manage my whole life (or since [specific time]), and I have a shunt system (or endoscopic third ventriculostomy (ETV)) to help drain the fluid.”

If you’re talking to teachers or friends who are curious, you can add a little more detail:

“The fluid normally cushions the brain, but when there’s too much of it, it can cause problems like headaches, nausea, or fatigue. My treatment helps manage that, but sometimes I need to take breaks or rest if I’m feeling off.”

Use Comparisons

People might better understand hydrocephalus if you compare it to something familiar. For example:

• “It’s like a plumbing system for your brain—if the pipes don’t work properly, the water builds up and causes problems.”
• “It’s like having a drain for your brain—if it gets clogged or stops working, it needs to be fixed.”

These comparisons make the condition relatable without overwhelming people with medical terms.

Be Clear About What You Need

When talking to teachers, focus on how they can support you. For instance:

• “Sometimes I get headaches, so I might need to take a short break during class.”
• “If I seem distracted or tired, it might be because I’m experiencing fatigue or pain. Let me know if you notice me falling behind so we can make a plan.”

With friends, you can say:

• “If I ever have to sit out during a game or leave a party early, it’s not because I don’t want to be there—it’s just something I have to do to take care of myself.”

Share What You’re Comfortable With

You don’t have to share everything. Decide ahead of time how much detail you want to go into and who you feel comfortable opening up to. For example, you might give teachers a more detailed explanation, while keeping it brief with classmates.

You can also create boundaries by saying something like:

“I’m happy to answer some questions, but I don’t want to talk about it all the time.”

Use Resources and Visuals

Sometimes, having resources can make it easier to explain. You could:

• Share a handout, a link, or the Hydrocephalus Association’s (HA) video, ‘About Hydrocephalus,’ which explains hydrocephalus in simple terms.
• Use diagrams or illustrations (like those on the HA’s website) to show a shunt or ETV.
• Mention any resources you’ve found helpful for managing hydrocephalus, such as HA’s mobile application, HydroAssist®, which is used for tracking treatments, symptoms, and more

Focus on What’s Important to You

Hydrocephalus doesn’t define you, but it’s part of your story. If you’re comfortable, you can share how living with it has shaped you. For example:

• “It’s taught me to stay positive and problem-solve when things don’t go as planned.”
• “It’s made me more empathetic because I understand what it’s like to endure tough things.”

Prepare for Questions

People might ask questions—some might be helpful, while others could seem awkward or invasive. Think about how you want to respond ahead of time. For example:

• If someone asks, “Does it hurt?” you can say, “Not usually, but I can get headaches sometimes.”
• If a teacher asks, “What can I do to help?” you could say, “Just check in with me if you notice I’m not feeling well or need extra time on assignments.”

Be Patient

Not everyone will understand the condition right away. That’s okay. The goal isn’t to make them experts but to give them enough information to support and respect you.

Know When to Ask for Help

If you’re having trouble explaining hydrocephalus, ask a parent, school counselor, or someone from your healthcare team to help. They can give advice or even meet with your teachers if needed.

Own Your Story

Sharing about hydrocephalus doesn’t have to feel overwhelming—it’s your story, and you get to decide how to tell it. By keeping things simple, using relatable examples, and focusing on what others need to know, you can help your teachers and friends understand and support you better. Remember, you’re not just explaining hydrocephalus—you’re showing them your strength, resilience, and everything that makes you unique.