I didn’t plan on becoming “The Girl in Gucci Glasses,” but in the middle of one of the hardest chapters of my life, I found myself — and a new kind of strength — in the most unexpected ways.

About five years ago, I was diagnosed with idiopathic intracranial hypertension (IIH), a condition that causes elevated pressure in the brain. My optic nerves were swelling, my vision was at risk, and every day felt like walking a tightrope between hope and fear. Suddenly, routine eye exams turned into monthly scans, MRIs, lumbar punctures, and countless medications. Some days, the doctors looked me in the eye and said, “You may lose your sight.”

And yet, despite the fear, the fatigue, and the uncertainty, I refused to lose myself.

Living with IIH: What It’s Really Like

IIH isn’t just a medical term on a chart — it’s a daily challenge. Symptoms can vary, but for me, they included:

• Severe headaches that felt relentless and unpredictable
• Visual disturbances, including blurred or double vision
• Ringing in the ears and dizziness
• Nausea and fatigue, which made even normal days feel overwhelming

Some days, it was exhausting to even get out of bed. Some nights, I laid awake, terrified of what the future might hold. It’s a condition that can make you feel powerless, isolated, and scared — and that’s not uncommon.

Finding Strength Amid Uncertainty

Here’s the thing: IIH is serious, but it doesn’t define you. You can still find moments of control, identity, and even joy. For me, part of that came through reclaiming small things that made me feel like myself — even something as simple as my eyewear, which reminded me of my personality and resilience.

But beyond the external symbols, the real power came from mental and emotional strategies:

• Prioritizing rest: Your body needs recovery time — don’t feel guilty for taking it.
• Tracking symptoms: Writing down headaches, vision changes, and triggers helps you advocate for yourself.
• Building a support system: Family, friends, doctors, and even online communities can make a difference when you feel alone.
• Celebrating small victories: Every symptom-free day, every manageable flare, is a win.

Words of Comfort for Anyone Going Through IIH

If you’re reading this and navigating your own IIH journey, know this:

• You are not alone. There’s a community of people who understand exactly what this feels like.
• It’s okay to feel frustrated, scared, or exhausted. Your emotions are valid.
• Your life doesn’t stop because of this diagnosis. You can still show up, love yourself, and find joy in small things.
• Strength doesn’t mean ignoring fear — it means moving forward anyway, one step at a time.

Every challenge with IIH is different, and that’s okay. Healing and coping are not linear. What matters most is that you keep showing up for yourself, even on the hardest days.

Moving Forward: Owning Your Journey

At the end of the day, IIH may have changed parts of my life, but it didn’t erase who I am. It taught me resilience, self-compassion, and the power of finding light in dark moments. You can find your own anchor, whether it’s a hobby, a community, or even just the determination to smile on a tough day.

If you’re living with IIH or supporting someone who is, remember this: you are strong, you are capable, and you are not defined by this diagnosis. Your journey is yours to shape, and you can still thrive despite the uncertainty.