My narcolepsy diagnosis journey

It took me over a decade to get a formal diagnosis

Narcolepsy has caused me so many problems in my life, I’m frankly amazed I actually got a formal diagnosis

I was diagnosed with narcolepsy today and let me tell you — the diagnosis is liberating. For the past thirteen years, the reason for my body feeling the compulsive urge to sleep for ten plus hours a day, regardless of how many hours of sleep I got during the previous night.

When I first tried to bring this up with a doctor around the age of eighteen (my parents were convinced “you’re just a teenager, teens are supposed to sleep all the time” during my midteen years), he told me “you are probably out partying all night, it’s why you’re so sleepy during the day”. He was convinced I was lying to him about getting a minimum of 6–7 hours of sleep per night (despite this actually being the truth — introverts and parties tend to not mix well). Bizarrely, this was a “substitute doctor” for my regular primary care doctor at the clinic I used at the time. I refused to see the “sub doctor” again. I refused to bring it up with my regular doctor at the time, out of fear of being accused of being a liar.

From being an eighteen-year-old to now (my late twenties), lots of different bloodwork was done. Iron levels were fine. Vitamin B and D were low, but it shouldn’t have caused the “trudging through mud fatigue” type of feelings I was having. My thyroid levels waivered…