The Empty Validation of a Narcolepsy Diagnosis
Last updated: August 2023
I’ve been diagnosed for almost 6 years now, and as much as it feels like it was only yesterday... it also feels like an entire lifetime has gone by.
Throughout these years, I’ve been fortunate enough to have talked to many people in the narcolepsy community and have been lucky to hear many unique stories. It’s helped me to be able to understand myself much more and realise that there are so many of us that share similar experiences.
Getting an official diagnosis can change your world
If I had to choose the single most memorable moment in my entire narcolepsy journey up until now, it would have to be the day I received my results from a sleep study in 2018.
I think that the day you receive your official diagnosis is always a pretty memorable one. No matter whether you were already pretty sure you had narcolepsy, or you had no idea at all... there is something about getting an official diagnosis that makes you feel as though your entire world has changed.
Until you realise that the world has only changed for you... and no one else.
At least that’s how my experience was.
Realizing I wasn't alone in my experiences
I felt exhilarated, relieved, and most importantly... validated.
At the time, I naively believed that a medical diagnosis meant something and that it would make some sort of difference. It didn't take me long to realise that I was wrong. But it would take me almost 5 years to realise that I wasn’t alone in this experience.
Throughout the years, I slowly began swapping stories with various people in the narcolepsy community. The more stories I heard, the more realised that so many people were describing the same experience that I lived when I was diagnosed. They described the exact same feelings of exhilaration, relief, and validation.
Furthermore, they confirmed that these did not last long at all either.
Awareness and understanding of narcolepsy is still lacking
I began questioning why it is that so many of us had this in common, and I began to understand that it was often because being diagnosed with narcolepsy isn’t the same as being diagnosed with more well-known conditions.
When I started telling people that I was diagnosed with a sleep disorder called narcolepsy, the word itself held no meaning to them. They had no idea what narcolepsy was no matter how I explained it... and, honestly, I barely understood it myself at the time.
But even now, after years of educating myself on my own condition, I still find it challenging to convey the gravity of narcolepsy in 3 sentences or less. There is no straightforward way to explain all the intricacies of narcolepsy.
Finding less support for invisible conditions
I learned that with rare and invisible illnesses like narcolepsy, getting a medical diagnosis is mostly only significant to the person who receives the diagnosis.
It isn’t like being diagnosed with conditions like schizophrenia, ADHD, or even migraines. People are more familiar with these words, and therefore they might be able to more easily attribute the expected amount of concern and sympathy to each.
Unfortunately, with narcolepsy, this often simply isn’t the case.
You don't need your narcolepsy validated by others
I wish that someone had made me aware of this before I received my diagnosis, because I believe it would have saved me from a lot of disappointment.
To those of you out there who are currently living with undiagnosed narcolepsy, just remember that while a diagnosis may change you, it may not change those around you.
Don’t be fooled by the momentary empty validation that a diagnosis can bring, and remember that you don’t need your condition to be validated by others in order for it to be real.
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