Am I a TYPICAL person with narcolepsy?


Originally at:

“Am I a TYPICAL person with narcolepsy?”

No, I’m not. Here’s why:

The majority of people living with narcolepsy are undiagnosed. Up to 75% of “us” are currently either undiagnosed or misdiagnosed with other conditions.


So the most TYPICAL person with narcolepsy is walking around unaware of the true nature of their symptoms, questioning their strength, thinking they aren’t cut out for their education or career. “If only I got MORE sleep, was LESS stressed, exercised MORE, ate LESS, surely I wouldn’t be so tired…”

Or maybe the TYPICAL person w/ narcolepsy has realized something is wrong & brought this to a healthcare provider. Maybe they were told their sleepiness isn’t unusual for [insert any age group or life stage, it doesn’t matter, we’ve heard it all].

Or maybe their medical provider took their concerns seriously (yoohoo!) BUT only studied sleepfor less than 2 hours in their medical education (bummer), so sleep disorders are not top of mind, and certainly not narcolepsy, that’s so rare (oh fudge!).

Perhaps the doctor thinks of thyroid issues or depression! Or if muscle jerking/collapsing is mentioned, epilepsy. Or if hearing voices, schizophrenia. Maybe the most TYPICAL person is down one of those paths right now, taking meds that make their symptoms worse (double whammy).

Therefore, I am in the minority who got lucky, got a sleep study, diagnosis & access to treatments in a somewhat timely fashion. For me, this was 6 years.

We say: “Average delays from symptom onset to diagnosis are 8 to 15 years.”

But that’s misleading, when you think about it, capturing the experiences of only those who get a diagnosis at all. I’m no mathematician, but shouldn’t this be: “from 8 years to a lifetime” to capture 100% of people with narcolepsy’s experiences?

So, no, I am NOT typical, which is exactly WHY I am raising my voice for World Narcolepsy Day. Because I know what it feels like to fight an invisible heaviness thinking it was within my power to control.

Thinking back to those years brings tears to my eyes, even now. I wish I could reach out to younger self in Brown University’s Rock library and say, “Julie, this isn’t normal & won’t go away, go see a sleep doctor now.”

Am I a TYPICAL person*diagnosed* with narcolepsy? I’ll answer that soon. 

from Blog – Julie Flygare