In 2019, I nearly lost my vision due to severe swelling of my optic nerves from papilledema. That diagnosis came alongside idiopathic intracranial hypertension, or IIH, a rare neurological condition caused by increased pressure around the brain. Even now, years later, I still see specialists to monitor everything and make sure things stay stable.

When I was first diagnosed, I was told there isn’t always a clear cause. In my case, it likely wasn’t just one thing but a combination of stress, weight changes, hormonal shifts, iron deficiency, and medication changes all happening at once. It felt like my body had reached a breaking point without much warning.

At the time, everything centered around protecting my vision. That was the immediate fear, and everything else came second. Once things stabilized, I expected life to feel like it had gone back to normal, but instead it shifted into something more ongoing, something I had to learn how to live with instead of move past.

Fast forward, and I found myself dealing with iron deficiency and anemia again. After trying to correct it, there was concern about overcorrection, so I was referred to a hematologist for a deeper workup. That appointment ended up being more thorough than I expected, with extensive testing to understand what was going on beneath the surface instead of just reacting to lab numbers.

It was nerve-wracking walking into that space, but I also remember feeling oddly grounded. By that point, I’d already learned that health is rarely straightforward. It’s rarely one problem with one simple fix. It’s layered, and sometimes it takes time to see the full picture.

After all of that testing, I learned I also have a rare blood disorder called thalassemia. It was unexpected, but it didn’t feel like a breaking point. It felt like another piece of information about my body that I now had to understand and factor into my care moving forward.

Living With Ongoing Care and What I’ve Learned

What all of this has taught me is that living with IIH, papilledema, and everything that follows isn’t a straight line. It isn’t a before and after story. It’s ongoing. It requires follow-up, adjustment, and attention over time.

I still see my ophthalmologist regularly to monitor my optic nerves and vision, and I also see my neurologist annually. They work together to make sure everything stays stable and properly monitored over time. About five years after my initial diagnosis, I also repeated my MRI, MRA, MRV, and lumbar puncture as part of a full reassessment. Everything came back stable, which gave us an updated baseline and reassurance moving forward.

There’s something grounding about continued monitoring, even when things are stable. It’s not about living in fear of what might come back. It’s about staying informed and taking care of what you already know your body is capable of.

More than anything, this journey has changed how I think about control. I can’t control every variable in my health, but I can stay engaged in it. I can ask questions. I can show up to appointments. I can pay attention when something feels off instead of ignoring it.

And maybe the bigger shift has been realizing how easy it is to put life on hold while waiting for things to feel certain. Health scares have a way of making you aware of time in a different way, not in a fearful sense, but in a clarifying one.

I don’t want to live as if I’m waiting for everything to be perfectly stable before I participate fully in my life. I’ve learned that stability isn’t a prerequisite for living, it’s something you build alongside everything else.

That doesn’t mean living recklessly or ignoring reality. It just means not shrinking your life down to only what feels safe.

If there’s anything I’ve carried forward from all of this, it’s that fear can quietly narrow your world if you let it. And I don’t want mine to get smaller than it needs to be.