A daily struggle…..

Living with chronic illness is something no one can ever prepare you for. When it’s Idiopathic Intracranial Hypertension (IIH) and Polycystic Ovary Syndrome (PCOS) together, the battle feels endless. These conditions affect every part of my life — from my ability to manage weight, to whether I can have children, to whether I can even function through an ordinary day without overwhelming pain.

I want to share my reality — not because I have answers, but because I know how isolating it feels. Maybe my story will help others understand what it’s like, or maybe it will help someone else living with this feel a little less alone.

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How Rare Are These Conditions?

Both PCOS and IIH are life-altering, but they are very different in how common they are:

• Polycystic Ovary Syndrome (PCOS): Around 1 in 10 women of childbearing age are thought to have PCOS. That’s about 10% of women worldwide. It’s one of the most common hormonal conditions, yet it is still misunderstood, often misdiagnosed, and far too often brushed off as “just irregular periods” or “a little weight gain.”
• Idiopathic Intracranial Hypertension (IIH): By contrast, IIH is rare. Research estimates it affects around 1 in 100,000 people in the general population. Among women of childbearing age who are overweight, that number rises to about 20 in 100,000. Even then, it’s still considered a rare disease. IIH causes increased pressure in the skull, which leads to symptoms like severe headaches, vision problems, dizziness, and fatigue.

To live with one of these conditions is challenging enough. To live with both is overwhelming. Statistically, I am an “unlucky” minority. But what the numbers don’t show is the daily struggle that comes with these diagnoses.

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The Struggle to Lose Weight

One of the biggest frustrations with PCOS is weight. Hormonal imbalances and insulin resistance make losing weight feel almost impossible. I can diet, I can exercise (on the days IIH doesn’t completely wipe me out), and I can follow every “rule” — yet the scales barely move.

Society loves to simplify weight loss to “eat less, move more,” but with PCOS and IIH, it’s never that simple. IIH itself is also closely tied to weight, and doctors constantly tell me that weight loss is the best treatment. The cruel irony is that the very conditions I have make weight loss nearly impossible. It’s a vicious cycle that feels like a trap.

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The Impact of Medication: Mounjaro’s Side Effects

When I finally turned to medication, I had high hopes. Mounjaro (Tirzepatide) is often praised as a breakthrough for weight management. And yes, for some it helps. But the side effects are no small thing.

Nausea, vomiting, stomach cramps, fatigue, and loss of appetite that feels more like illness than control — these can be daily realities. Instead of making me feel in control of my health, sometimes it just makes me feel more broken.

There’s a mental burden too: the constant question of whether the side effects are worth it, whether this medication will finally be the tool that helps me escape this body that feels like it’s holding me hostage.

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The Silent Grief of Infertility

PCOS doesn’t just affect weight — it steals something even more painful: fertility. For many women, including me, the reality is that conceiving naturally may never happen.

As a woman, it’s devastating. Society tells us our worth is tied to being able to bear children. When that option is taken away, it feels like I’ve failed — failed my body, failed my partner, failed at one of life’s most basic expectations.

The grief isn’t just in the absence of children — it’s in every pregnancy announcement, every baby announcement, every casual question of “when are you having kids?” It’s a silent heartbreak that never really goes away.

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The Daily Impact of IIH

Then there’s IIH. It’s not just a headache disorder — it’s a condition that can rob me of independence. The pressure in my head can make walking across the room, bending over, or even just existing in daylight unbearable. Some days, normal day-to-day tasks are impossible. On the worst days, even getting out of bed feels like climbing a mountain.

And the scariest part? IIH can lead to vision loss. The constant fear of losing my sight lingers in the background of every flare-up.

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The Mental Health Toll

The hardest part isn’t just the physical pain — it’s the emotional and mental weight. Depression and anxiety creep in, fed by frustration, grief, and exhaustion. It’s not just my life that’s affected either — it impacts everyone around me. My loved ones see me suffer, feel helpless, and sometimes carry the emotional burden too.

Chronic illness doesn’t just happen to one person — it ripples through relationships, families, and friendships. The guilt of that can be overwhelming.

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Finding a Way Forward

I wish I could wrap this up with hope, with a success story about overcoming it all. But the truth is, some days are just about surviving. And that’s okay.

What I do know is that by speaking about these struggles openly, I take away some of the shame and isolation that often come with them. If you’re living with PCOS, IIH, or both — please know you are not a failure. You are not alone. And you are stronger than you realize, even when your body makes you feel broken.

We may not always win the battles our bodies throw at us, but we fight them every single day. And that in itself is a form of strength.