Jordan Beaven

I don’t think I’ve ever really been able to explain what living with Idiopathic Intracranial Hypertension feels like in a way that truly reflects what it does to me. I have tried before, in bits and pieces, but it always ends up sounding smaller than it actually is. Simpler than it actually is. The truth is, there’s nothing simple about living in a body that constantly feels like it’s under pressure.

It’s hard to describe something that never quite presents the same way twice. That’s one of the things I struggle with the most, especially as someone who is autistic and already finds it difficult to process and communicate what’s happening internally.

My symptoms aren’t consistent. They don’t follow a neat pattern. They come and go, change intensity, overlap, disappear and then come back in ways that make me question whether I even understand my own body. But what never changes is the fact that something always feels wrong.

Most days begin with that feeling well before I’ve even properly woken up. There’s a heaviness in my head that doesn’t belong there, like it’s too full, too tight, like there isn’t enough space for my brain inside my own skull. It’s not a sharp pain at first, it’s more like pressure that builds quietly, like something sitting on top of me that I cannot shift. Then the headaches come in, or maybe they were already there and I just become more aware of them.

IIH headaches are never just one type of pain. Sometimes they throb in time with my heartbeat, sometimes they feel like a tight band wrapping around my head, sometimes it’s sharp and sudden, and other times it’s just this constant, dull, exhausting ache that doesn’t completely go away. There isn’t really relief, just moments where it’s slightly less unbearable.

My vision is probably the part that unsettles me the most. It changes without warning. One minute I can see clearly, and the next things blur, or double, or I notice grey patches drifting into my sight. I can be hypersensitive to light. Sometimes everything just fades for a second, like someone has dimmed the world, and in those moments I feel this immediate drop in my chest because I don’t know if it’s going to come back properly. Even when it does, the fear doesn’t leave with it. It lingers in the background, waiting for it to happen again.

There is also the constant noise. The ringing in my ears, but more than that, the whooshing sound that follows my heartbeat. It’s like I can hear the pressure inside my own head. It makes quiet moments feel loud, and it’s exhausting never having true silence. Sometimes I catch myself just wishing for stillness, for a moment where my body isn’t making itself known to me in such a relentless way.

The dizziness is difficult to explain as well. It’s not just feeling lightheaded, it’s like the world doesn’t quite feel stable. As if I’m slightly disconnected from where I am, my balance isn’t something I can trust. It makes everything feel harder than it should be. Moving, focusing, even just existing in a space can feel like too much when that feeling hits. Alongside that comes the nausea, that unsettled feeling that sits in my stomach and makes everything feel heavier.

Then there’s the exhaustion, which is probably one of the most debilitating parts of all of this. It’s not the kind of tired that sleep fixes. It’s deeper than that. It sits in my body, in my bones, in my mind. It makes simple things feel overwhelming. It makes conversations harder to follow, harder to stay present in. It makes everything feel like effort, even doing the things I want to do.

My body holds so much tension without me even realising. My neck aches, my shoulders feel heavy, and there’s this constant pressure behind my eyes that I don’t have the right words for. It’s just there, always there, reminding me that something isn’t right.

What makes all of this even more intense is the way my brain responds to it. On days where the symptoms are worse, my thinking slows down. Everything feels foggy, like I’m trying to process things through water. As someone who already struggles with processing and communication because of autism, this becomes overwhelming very quickly.

I know what I’m feeling is real and intense, but turning that into words that other people understand feels almost impossible. I end up simplifying it into something like, “something inside feels wrong,” even though that sentence holds so much more than it seems.

That lack of clarity, both internally and externally, can be incredibly isolating. It makes me question myself. It makes me feel like I’m not explaining things properly, that I’m not being understood, like what I’m experiencing is being reduced to something manageable when it really isn’t.

This condition doesn’t just affect one part of my life. It affects everything. My energy, my independence, my ability to plan ahead, my confidence in my own body. I don’t know how I’m going to feel from one moment to the next, and that unpredictability makes it hard to trust anything, including myself.

There are moments, usually when I’m sitting outside in the sun, where I can almost forget it for a second. Where my body feels a little lighter, where I can breathe a bit easier, where I can almost recognise myself again. Then there are days where just existing in my own head feels overwhelming, where the pressure, the noise, the dizziness, the exhaustion all sit on top of each other and make everything feel too much.

From the outside, I know I can look okay. I can sit there, talk, even smile. But that doesn’t reflect what’s happening internally. It doesn’t show the effort it takes to hold myself together in those moments, or how much I’m managing just to appear present.

Living with IIH is debilitating in a way that is difficult to fully explain unless you’ve experienced something similar. It isn’t “just a headache”. It’s a constant, invasive presence that affects both my physical and mental health every single day. It changes how I experience the world, how I move through it, how I understand my own body.

There are times where it feels so overwhelming that I find myself wishing, even just for a moment, that I didn’t have to live like this. That’s a hard thing to sit with, but it’s honest. It doesn’t mean I’m giving up, it just means this is difficult in ways that are hard to carry all the time.

I am still here. Still trying to understand it. Still trying to adapt to a debilitating condition. I am constantly trying to find ways to live alongside something that feels so consuming.

Writing this doesn’t fix it. It doesn’t make it easier. But it does make it feel a little less invisible.

And maybe that matters.