Body Image and Scars: Living with Hydrocephalus

Learning to Feel Comfortable in Your Skin: Scars, Hydrocephalus, and Body Image

Having hydrocephalus almost always means you’ve had surgery, and in most cases, it’s been more than one. For many, it’s multiple surgeries over a lifetime. Because treatment for hydrocephalus often involves placing a shunt or performing an endoscopic third ventriculostomy (ETV), most people have at least one surgical scar, and sometimes several, on their head, neck, chest, stomach, and/or back. Some fade with time, while others remain as constant reminders of what your body has endured and overcome.

And while people often say, “You should be proud of your scars; they’re a testament of what you’ve survived,” it’s okay if that doesn’t always feel true. Sometimes, scars just make you feel different, and you aren’t alone if you feel that way about your scars.

When You See Yourself Differently

After a shunt or ETV surgery, it’s completely normal to feel self-conscious. Maybe part of your hair was shaved, or you’ve noticed thin spots or bald areas from multiple surgeries. Maybe your abdominal scar, or a scar on another part of your body, shows when you wear certain shirts, go swimming, or change in a locker room. You might notice people looking, or just feel like they’re looking, even if they’re not.

Many people find little ways to feel more confident while they heal. Some people wear scarves, hats, or headbands to cover their incision while it heals or because it helps them feel more confident. Others choose shirts with higher necklines or a looser fit, or simply take time to get used to how their scars look. There’s no right or wrong way to handle it. What matters most is doing what makes you feel comfortable.

After the healing, scars can still impact how you feel. This can be in social situations, like dating or meeting new friends, or even feeling confident at work or the gym. Those moments can stir up insecurities. This feeling is more common than you might think.

When Body Image Turns Into Body Dysmorphia

Feeling self-conscious is one thing, but sometimes, those thoughts can take over. Body dysmorphia happens when you can’t stop focusing on a part of your body you wish looked different. You might check your reflection often, compare yourself to others, or feel anxious about people noticing your scars.

Body dysmorphia can feel exhausting. You might avoid photos, hide under certain clothes, or fixate on your reflection, unable to look away from the one thing you wish you could change. Even when friends or family tell you they don’t notice, it can be hard to believe them because what you see doesn’t match what they see.

It’s not about caring too much about how you look, it’s about living in a body that’s been through a lot and struggling to see it without judgment. If you recognize yourself in these feelings, you don’t have to handle them alone. Therapists familiar with chronic illness or medical trauma can help you rebuild a more compassionate relationship with your body and begin to quiet that inner critic.

It’s important to remember: most people don’t see what you see. What feels obvious to you might be barely noticeable to someone else…or they might not care. But your feelings are real and valid.

You’re Not the Only One Who Feels This Way

People with hydrocephalus often share similar stories:

• “When they shaved part of my head, I didn’t want anyone to see me until it grew back.”
• “I often make sure my bald spot is hidden when I put my hair up.”
• “I have several scars on my stomach from revisions, and I used to change in a bathroom stall for gym class.”
• “I always wanted to wear a bikini and it took me a long time to feel confident enough to do it.”

Hearing others talk about it can make a big difference. You don’t have to love your scars right away—or ever. Acceptance takes time.

Finding Confidence, Your Way

Here are a few ways to start feeling more comfortable in your skin:

• Cover up if you want to. don’t if you don’t. Scarves, hats, or headbands can make you feel more confident while healing. The most important thing is dressing in a way that feels right for you.
• Focus on what your body has done, not how it looks. Those scars are proof of strength, not flaws.
• Use affirmations to practice self-kindness. Simple phrases like “I’ve survived so much” or “My scars tell my story” can shift how you see yourself.
• Share your story. The more people speak openly about scars, the less stigmatizing or isolating it feels. This can be a powerful way to educate others about hydrocephalus. Lean in with confidence!
• Connect with others who understand. Online support groups or hydrocephalus events can help you find people who truly get it.

You Are More Than Your Scars

It’s okay to have days when you wish your scars weren’t there. But they don’t define you. They don’t make you less attractive, less capable, or less worthy of love and respect.

Your scars tell the story of survival; of every surgery, every challenge, and every moment you kept going. They’re part of your story, but not the whole story. Over time, you might find that what once made you self-conscious becomes something you’re quietly proud of: a visible reminder of everything you’ve overcome.

If you’re struggling with body image or self-esteem related to hydrocephalus, you’re not alone. Our Community Networks (online and in person support groups) are safe spaces to share, connect, and find understanding.

Resources

• Body Dysmorphic Disorder Foundation: Get clear information on body dysmorphic disorder—including signs, treatment options, and support.
• Anxiety and Depression Association of America (ADAA): Learn more about body dysmorphia, anxiety, and practical coping strategies through the ADAA’s educational resource.
• Mental Health America (MHA): Explore tools and guidance for building self-esteem, improving body image, and supporting emotional well-being.

Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2025.

This article is designed to provide helpful information on the subjects discussed. It is not intended as a substitute for treatment advice from a medical professional. For diagnosis or treatment of any medical condition, consult your doctor.