{"id":39591,"date":"2025-10-08T15:31:22","date_gmt":"2025-10-08T19:31:22","guid":{"rendered":"https:\/\/www.hydroassoc.org\/?p=39591"},"modified":"2025-10-08T15:31:22","modified_gmt":"2025-10-08T19:31:22","slug":"hydrocephalus-high-school-coping-chronic-pain","status":"publish","type":"post","link":"https:\/\/www.hydroassoc.org\/hydrocephalus-high-school-coping-chronic-pain\/","title":{"rendered":"Hydrocephalus in High School: Coping with Chronic Pain"},"content":{"rendered":"

By: Jenna<\/span>\u00a0Sanchez<\/strong><\/p>\n

Growing Up with Hydrocephalus: A High School Perspective<\/h2>\n

In 2015, I wrote this during one of the most difficult times in my life: high school<\/a>. I was a sophomore, just trying to survive school, friendships<\/a>, and figuring out who I was\u2014while also preparing for what would be my 47th (maybe 48th?) brain surgery. Living with hydrocephalus has shaped my life in ways that most people my age back then couldn\u2019t begin to understand.<\/p>\n

The Hidden Struggles of Teens with Hydrocephalus<\/h2>\n

Too often, we overlook what it really means to be a young person managing a chronic condition. Students with hydrocephalus are forced to grow up faster than their peers \u2014not just physically, but emotionally.<\/p>\n

It\u2019s tough when your pituitary gland is raging, even harder when hydrocephalus adds extra challenges. You learn to advocate for yourself in rooms full of adults with degrees, hearing \u201cyou\u2019re presenting well\u201d even when you know something is seriously wrong. You recognize your own symptoms better than most medical students, yet still aren\u2019t believed.<\/p>\n

When Doctors Say \u201cYou\u2019re Presenting Well\u201d<\/h2>\n

That kind of experience doesn\u2019t just test your patience\u2014it shakes your sense of self. It makes you question your instincts and chips away at the confidence you\u2019re still trying to build, while classmates are worrying about prom, finals, or what to wear on a Saturday.<\/p>\n

Meanwhile, I was calculating how to survive another ER visit without being dismissed. This is what it was like growing up with hydrocephalus for me. This is what I wrote, in real time, while trying to live through it.<\/p>\n

Living with Chronic Pain and Hydrocephalus<\/h2>\n

As someone who is besties with her MRI tech, Facebook<\/a> friends with most of the nurses on her unit, and can call her surgeon by their first name, I know the reality of \u201cchronic pain<\/a>\u201d.<\/p>\n

By then, I was preparing for another brain surgery. I knew my symptoms, and I knew my body: seizures<\/a> at night, slurred speech, dizziness, forgetting words like \u201cthe.\u201d But because I \u201cpresented well,\u201d medical professionals often dismissed my reality.<\/p>\n

The Challenge of Seeking ER Care<\/h2>\n

\"\"<\/p>\n

When you\u2019re someone who laughs while saying, \u201cmy headache<\/a> is a 9\/10 and I\u2019ve been throwing up every day because of it,\u201d\u00a0 it isn’t something that most surgeons can grasp. This leads to a whole host of issues, like not being able to ask for the pain medicine that you know helps without risking being labeled a drug seeker or having a psychologist called on you because you sound like a drug addict. You\u2019re trapped: either you \u201cpresent too well\u201d and get ignored, or you let yourself unravel just to be taken seriously. It\u2019s a constant limbo\u2014wanting to appear unwell enough for them to believe you, but also needing to hold yourself together to function. For me, it\u2019s often harder to appear as though I have an issue than it is to endure the issue itself. For anyone else living this, trust your body. Don\u2019t wait for the pain to become so bad that you can\u2019t communicate\u2014that\u2019s usually when they\u2019ll finally listen.<\/p>\n

A friend once asked why I didn\u2019t just go to the ER. My answer? Because I already knew the script. Hours of waiting just to receive IV fluids and have a medical student predict nothing would be done because I \u201clook good\u201d. A scan of my ventricles, even though my chart clearly says my ventricles don\u2019t change with a shunt malfunction. And, finally being sent home after 18 hours with an appointment to see my neurosurgeon later.<\/p>\n

By then, I\u2019d be back within weeks\u2014headache so bad it made me pass out and vomit\u2014before anyone would act. That\u2019s why I didn\u2019t rush to the ER. I knew my body, and I knew what would happen. My friend was quiet, then simply said, \u201cWow\u201d.<\/p>\n

Trusting Yourself Through Chronic Illness<\/h2>\n

Chronic pain is exhausting. It wears on every part of you. But if you live with it, remember this: you know your body best. Don\u2019t wait for your pain to become unbearable before you advocate for yourself.<\/p>\n

For me, survival has always meant finding balance\u2014staying safe, staying hydrated, and being as realistically optimistic as possible.<\/p>\n

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Disclaimer: <\/em>This blog 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.<\/em><\/p>\n\r\n

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