Patient Perspective on Brain Health Series

Living With the Unknown – Until Narcolepsy Finally Had a Name

by Agata Zadora

 

I was eighteen when everything changed.

Until then, I was active, ambitious and full of plans for the future. Looking back, I can’t pinpoint the moment when it all started. It didn’t happen overnight. The symptoms appeared gradually. At first, it was a constant lack of energy and strength. It felt as though I was constantly running on an empty battery. I felt permanently drained, and despite no major changes to my lifestyle, I gained a significant amount of weight. Only later did excessive daytime sleepiness appear, followed by episodes of falling asleep that I simply couldn’t control.

For the next twelve years, I searched for answers.

I visited countless doctors, underwent numerous tests, and heard many explanations- just never the right one. I was told it was stress, iron deficiency, burnout, or simply that I needed to get more sleep. From the outside, I looked healthy. In reality, every day felt like a battle with both my brain and my body, as though I were trapped in the body of an eighty-year-old despite being in my twenties.

Not knowing what was happening to me was often worse than the symptoms themselves.

Without a diagnosis, I blamed myself. I thought I was weak, lazy or somehow failing at life while everyone else seemed able to cope with work, social life and everyday responsibilities. Every plan had to be made around an exhaustion that no one could see and that I couldn’t explain.

I finally received my diagnosis of narcolepsy after I turned thirty.

The diagnosis didn’t suddenly make life easier. Narcolepsy did not disappear simply because it had a name. For the first time in twelve years, my life finally made sense.

The saying “better the devil you know than the devil you don’t” perfectly described how I felt. I was still living with the same disease, but I finally knew what I was fighting. I understood why I kept falling asleep, why my body never seemed rested, and why I had struggled for so many years despite trying so hard.

It still took several years to rebuild my life around the reality of narcolepsy.

I had to learn my limits instead of constantly pushing beyond them. I had to organise my work, daily routine and expectations differently. I learned that planned naps are not a luxury but a necessity. I stopped comparing myself to healthy people and started focusing on what allows me to function well.

The biggest change happened in the way I thought about myself.

The diagnosis allowed me to let go of the guilt and treat myself with greater compassion. I stopped seeing myself as someone who simply was not trying hard enough. Instead, I came to understand that I had been living for years with a rare neurological disorder that had gone unrecognised.

Today, I know that narcolepsy is not just part of my life- it is a constant part of who I am. Some parts of my life change. I was once a student, today I am a mother, and throughout my life I have taken on different professional and personal roles. But I am a person with narcolepsy every single day. There are no days off from it, no holidays, no breaks. Today, I no longer try to pretend otherwise. It is the defining characteristic of my life- the one that shapes who I am and how I navigate every single day.

I share my story because I know there are people today who are exactly where I once was- living with unexplained symptoms, questioning themselves, and searching for answers. My twelve-year journey to a diagnosis left me with more than exhaustion; it also left me frustrated by how difficult it is to live with a rare disease and how easily the voices of people with rare conditions go unheard.

The day I was finally diagnosed, I decided that those twelve years would not be wasted. Since then, I have been actively raising awareness of narcolepsy through social media and patient advocacy. I serve on the Board of the European Narcolepsy Alliance of Patients (eNAP) and lead the national narcolepsy patient association in my country. Every day, despite living with limited energy, I consciously choose to dedicate part of it to advocacy. Maybe these are only small steps. But if sharing my story helps even one person receive an earlier diagnosis, it is worth it.

Because no one should have to wait twelve years to understand what they are living with.