Category: Dealing with epilepsy

Dealing with epilepsy · Misconceptions · Way too personal

Why epilepsy really sucks

Codrin POLeave a comment

A few days ago, I wrote about my latest seizure from last week: happening at a company retreat, bla bla bla. The reason why it mattered so much to me wasn’t that it happened there or that, after a week, my tongue is still numb from bitting it and I have trouble speaking.

What really sucked is that I have to turn back the clock. Before this seizure, the last one that I had was a bit over a year ago and it was a mild one: I knew it was coming, I stayed in bed that afternoon and I woke that evening for a few minutes feeling that it happened (received external confirmation also).

But epilepsy sucks because, sometimes, you get hope that it went away and you can enjoy life and then it comes back with a literal bang.

The new count is now at 7 days.

Dealing with epilepsy · Misconceptions · Not too personal · Way too personal

My 1-year seizure-free streak is gone

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On May 8th, 2025, I had my last 2 seizures. Until yesterday…. the day started normally: at a corporate team-building, listening to presentation and waiting for the early afternoon break to go explore Lisbon a bit more before the last group activities.

But, during lunch, everything started to seem so familiar. A headache, a feeling of confusion, headspinning… I knew that something was coming. So I gave up my plans and laid down in my room and tried to rest. It’s difficult to even do this … a much of feelings ranging for sadness to disappointment and pure rage come in minutes and change every time to try to thing about something else.

Yesterday evening, I woke up with a swollen tongue that was overly bitten this time and I’m struggling to speak. The night wasn’t kind. Kept waking up every hours or so, either because of my headache, back pain and many other kinds of pain. In morning, I saw the extent of what happened: blood on the floor in the bathroom, in the room – all over the bed – and … on me. My t-shirt had huge blotches of blood, the bedsheets also.

Now, it’s time to restart the count and try to make it longer, much longer.

Dealing with epilepsy · Misconceptions · Way too personal

The Biggest Challenge of Epilepsy Isn’t What You Think

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When people think about epilepsy, they usually think about the seizure.

I get it. I have tonic-clonic seizures, and they’re dramatic, unpredictable, and honestly, scary to witness. But what most people don’t see is everything that happens between the seizures—especially at work.

I’ve realized that one of the biggest challenges of living with epilepsy isn’t always the condition itself. It’s the misunderstanding that comes with it.

Telling an employer or colleague that I have epilepsy can feel like taking a huge risk. Not because I’m ashamed of it, but because I never know what they’ll think. Will they see me as capable? Or will they suddenly start questioning whether I can do my job?

It’s frustrating because, before they knew about my epilepsy, my work spoke for itself. My ideas mattered. My experience mattered. Then, with one conversation, it can feel like all they see is the diagnosis.

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The awkward silence after saying “epilepsy”
Dealing with epilepsy · Misconceptions

The awkward silence after saying “epilepsy”

Codrin PO

There is a strange silence that sometimes appears after someone says the word “epilepsy”.

Not always. Some people react normally. Some ask questions. Some even try to understand. But many simply freeze for a few seconds, as if they suddenly became afraid of saying the wrong thing.

He noticed this years ago.

At first, he thought he was imagining it. Maybe people just needed time to process the information. Maybe they were surprised. But after enough conversations, patterns become obvious.

People suddenly become careful.

Continue reading “The awkward silence after saying “epilepsy”” →
Dealing with epilepsy · Way too personal

Friendship: The Beauty of the “Non-Flincher”

Codrin PO

In many of my previous posts, I mentioned that people often react to epilepsy with fear—not fear for me, but fear that they won’t know how to handle the situation. This fear creates a distance. It makes people treat you like you’re made of glass, or worse, they stop inviting you places because they don’t want the “responsibility” of your health.

However, there is a special category of person I call the “Non-Flincher.” These are the friends who know about the condition and don’t make it the centerpiece of the relationship. They don’t panic if you look a little tired, and they don’t treat a seizure like a scene from a horror movie. If one happens, they simply follow the protocol, wait it out, and then ask if you want a glass of water or to talk about something else entirely.

Continue reading “Friendship: The Beauty of the “Non-Flincher”” →