I never planned on becoming “The Girl in Gucci Glasses.”

If you’ve followed me for a while, you’ve probably noticed them. They’ve become part of my everyday look, and people often ask about them, but what most people don’t know is that they became part of my story during one of the hardest seasons of my life.

About five years ago, I was diagnosed with idiopathic intracranial hypertension (IIH) after doctors discovered I had papilledema, which is swelling of the optic nerves caused by increased pressure inside the skull. At the time, I had never heard either of those terms, and I had just finished lunch with my mom at Olive Garden, still one of my favorite places no matter how simple that might sound. Chicken and gnocchi soup will always be my comfort order.

I remember leaving that appointment in a kind of shock that’s hard to describe. I don’t think I fully understood what I was being told at first. I just sat there trying to process words I’d never heard before, and then it slowly started to sink in. Am I going to lose my vision? That thought didn’t come all at once, it came in pieces, and once it did, I cried the rest of the day and into the night. I don’t think I’d ever felt fear like that before.

After that, everything in my life changed quickly. Routine eye exams turned into monthly appointments. I was suddenly going through OCT scans, visual field testing, MRIs, lumbar punctures, medications, and more specialists than I could keep track of. My life started to revolve around monitoring my vision and trying to understand what was happening inside my own body.

One appointment stands out more than any other. After my optometrist referred me to a specialist in Dallas, I went in hoping for reassurance, but I left feeling dismissed. I remember hearing something along the lines of, “well, it happens,” as if what I was going through was small or routine. There was no real explanation, no guidance, and no acknowledgment of how scared I was. My mom and I walked out of that office knowing we weren’t done looking for answers.

We eventually found another specialist, and everything changed after that. She listened in a way I hadn’t experienced before. She explained what was happening, answered my questions, and treated me like a person instead of just a diagnosis. She’s still my ophthalmologist today, and I continue to see her regularly even though my papilledema has resolved. I also see my neurologist annually so both sides of my care stay connected and consistent.

If there’s one thing I’d tell anyone newly diagnosed with idiopathic intracranial hypertension or papilledema, it’s this: you deserve to feel heard. If you don’t feel safe or supported with your care team, it’s okay to find someone else. That can truly change everything about how you move through this.

Living with IIH isn’t only about headaches, blurred vision, ringing in your ears, or fatigue, even though those symptoms are real and exhausting. It’s also about the uncertainty that comes with them, the constant questioning of whether something is changing, and the emotional weight of trying to explain an invisible illness while appearing completely fine on the outside. There were many times I barely made it back to my car before I broke down. I’d sit in the parking lot crying, overwhelmed and scared, because for the first time in my life I truly didn’t know what came next, and that feeling stayed with me longer than I expected.

Over time, I learned that while I couldn’t control everything about IIH, I could control how I cared for myself through it. I learned to slow down instead of pushing through symptoms, to track what I was experiencing so I could advocate for myself more clearly, and to ask questions even when I felt unsure. I also stopped waiting for big milestones to feel okay and started noticing smaller ones instead, like a stable scan, fewer headaches, or an afternoon where I wasn’t thinking about my diagnosis at all.

And then there were the glasses.

When I was at my optometrist’s office early on, the optician pulled out a pair of Gucci frames from the last-call rack and told me, “These look like you.” I was slightly offended they were on clearance, but I tried them on anyway, and I loved them immediately. They were originally sunglasses, but we turned them into my everyday prescription glasses, and somehow they’ve been part of my identity ever since.

Looking back now, I think that’s why they matter so much. They remind me that even during one of the hardest chapters of my life, I was still allowed to feel like myself. I could still laugh, still have style, and still find small moments of joy even when everything felt uncertain.

If You’re Newly Diagnosed

If you’re reading this because you were recently diagnosed with idiopathic intracranial hypertension or papilledema, I know how overwhelming those first weeks can feel. I remember searching for answers and hoping someone out there had a story that sounded like mine. What I wish I’d known then is that life doesn’t return exactly to what it was before, but it also doesn’t stop being meaningful or full of ordinary moments that matter. You learn your new normal slowly. You learn your body. You learn your care. And over time, the uncertainty becomes something you can carry instead of something that controls you.

Editor’s Note (Five Years Later): Although my papilledema has resolved, I continue to see my ophthalmologist for regular eye exams and testing, and I also have annual appointments with my neurologist. They work closely together to monitor my health and make sure everything stays stable. About five years after my initial diagnosis, we repeated my MRI, MRA, MRV, and lumbar puncture as part of a full follow-up evaluation. Everything came back clear, which gave us an updated baseline and confirmed continued stability moving forward. Ongoing follow-up care has been a big part of my journey, even after improvement, and it’s given me a lot of peace of mind.

Every person’s experience with idiopathic intracranial hypertension and papilledema is different. This post reflects my personal journey and isn’t intended to replace medical advice. Always follow the guidance of your healthcare team.