I hate my brain disease

There’s something deeply unsettling about seeing your eyes and your brain scans in a medical publication. Not metaphorically, not poetically, but clinically. As evidence. As symptoms. As a case.

Your eyes are meant to show who you are. Emotion. Recognition. Life.
But suddenly, they’re being used to explain the first symptoms that something wasn’t right with me.

I saw my eyes captured at the height of my illness, during the search for a diagnosis of a brain disease. And it felt like looking at a version of myself that didn’t fully belong to me anymore. That image wasn’t taken for memory or meaning. It was taken to understand damage, malfunction, uncertainty.

Your eyes and your brain are supposed to work together effortlessly. You never think about it until something breaks. Until vision, movement, or thought becomes unreliable. Until your body stops feeling like something you can trust.

One of the hardest parts is knowing that one of my symptoms is cognitive slowing. Thinking takes longer. Processing feels heavier. And I notice it. That awareness is its own kind of grief.

I wanted to be a psychologist.

I wanted to help people make sense of their minds, their trauma, their pain. But now I find myself asking questions I never thought I’d have to ask so young. How can I help others when there’s something wrong with my own brain? What if I can’t be there for patients the way they need? What if my mind lets me down?

Those questions don’t come from doubt in my heart. They come from fear.

But living through illness teaches you things that textbooks can’t. What it feels like to be vulnerable. What it means to lose trust in your own body. How important it is to be truly seen and believed when something is wrong.

Maybe my path will look different now. Slower. More intentional. Maybe it won’t follow the plan I had at fifteen. But understanding the brain from the inside, from experience, has given me something real. Something honest.

Your eyes and brain are connected in ways we don’t fully understand. And maybe neither is the future.

But I’m still here. Still thinking. Still feeling. Still wanting to help.

And that counts for something.

find my eyes and my brain in a publication here - https://pmc.ncbi.nlm.nih.gov/articles/PMC3822156/?fbclid=PAQ0xDSwPdDF1leHRuA2FlbQIxMABzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAadK4NuVyATHSqf0-A6-0_L0eQWfTO_y37E6Jw6G6FcBuhQjyqo7mnPYyMvngw_aem_8V80zGZE2la5KmqfVDmh9Q

I have a brain disease.

Last year, when I was 15, I was diagnosed with a brain disease. Biotin thiamine responsive basal ganglia disease. Even now, at 16, saying the name still feels unreal.

It’s a condition so rare that only around 23 known cases exist globally. There are no familiar stories to compare yourself to, no clear roadmap, and very little reassurance. When something is that rare, it’s not just the illness that’s frightening, it’s the unknown.

For those who knew me when I was ill, you may remember how suddenly everything changed. For those who didn’t see me at all during that time, it’s hard to explain just how serious it was. Rare illnesses often happen quietly. People disappear from school, from social spaces, from everyday life, and the world keeps moving as if nothing happened.

What affected me most was realising how young I was.

When you look up diseases, you mostly see older people. When it affects younger people, the stories often end badly. That’s something no one really says out loud, but you feel it. It stays with you. Being young and seriously ill forces you to think about things most people your age never have to consider.

I don’t know what the future holds. I can’t pretend I do. Living with a rare brain condition means living with uncertainty, learning to sit with questions that don’t have answers yet. Some days that’s easier than others.

But I do know why I want to share this.

I want to help someone else feel less alone.

When you’re dealing with something rare, it’s incredibly isolating. You don’t see people your age going through the same thing. You don’t see yourself reflected anywhere. And that can make you feel invisible, even when you’re fighting something very real.

If someone out there is going through a similar experience, especially someone young, I hope this reminds them that they’re not alone. That being ill doesn’t make you weak. And that surviving something rare and scary is something to be proud of, even if you’re still figuring out what comes next.

I’m still here. I’m still learning. And if sharing my story helps even one person feel seen, then it’s worth telling.

Finding Your Escape

In a world that often feels relentlessly fast-paced and demanding, we all need an escape. A place to switch off, recharge, and simply be. For some, it's a quiet book. For others, a challenging hike. For me? It's a boyband. And not just any boyband. While my school hallways are dominated by conversations of One Direction or JLS, my heart belongs to The Wanted.

Yep, you heard me. And if you know me, you probably already know this. I'm "that girl" at school, the one with the Wanted posters, the one who can rattle off every lyric, every interview anecdote. And honestly? I wouldn't have it any other way.

Now, before you scoff, let's talk about why this seemingly niche obsession is so incredibly important.

Life, especially as a student, can be stressful. There are exams, assignments, social pressures, and the general rollercoaster of growing up. Sometimes, you just need a mental break. And that's where "distraction" gets a bad rap. It's often seen as avoidance, as unproductive. But I argue that positive distraction is a vital tool for well-being.

When my brain is fried, or I'm feeling overwhelmed by a looming deadline, a dose of The Wanted is my instant reset button. 

Last year, I went through a really shitty time with my health. Being in and out of the hospital was incredibly tough, and there were days I felt completely defeated. What kept me going? You guessed it, The Wanted's music. It was my constant, a source of comfort and escape when everything else felt uncertain.

It’s almost unbelievable, but The Wanted actually visited the hospital I was in during that time. My heart absolutely broke because I was too sick to even go down and see them. But even knowing they were there, in the same building, felt like a small, hopeful sign. Their songs became the soundtrack to my recovery, a reminder of joy and energy even when I had very little of my own.

In a world that often encourages conformity, there's something incredibly empowering about embracing what makes you unique. 

Being "the girl obsessed with The Wanted" has actually brought me a lot of unexpected positives:

• It's a clear part of my identity, something I'm proud of and happy to talk about, bringing a strong sense of self.

• Believe it or not, my unique interest often sparks interesting conversations and helps people remember me.

• Finding My Tribe (Eventually!): While maybe not in my immediate circle at school, the internet has allowed me to connect with other dedicated Wanted fans, creating a community where my passion is not only understood but celebrated.

So, if you find yourself deeply engrossed in something that might seem a little out of step with what everyone else is doing, embrace it!

Your distraction might just be your personal superpower. It's your personal sanctuary, your mood booster, and a fundamental part of what makes you, you.