Living with narcolepsy: 'I hate myself at times'
"It feels like you're being torn apart."
That's how Alex Haagaard describes what it's like to try to push through the feelings of intense sleepiness that come with being a narcoleptic.
Alex lives with chronic pain, and, along with narcolepsy, has been diagnosed with fibromyalgia, depression, and many other illnesses.
Narcolepsy doesn't mean you just fall asleep at any time, as is often the Hollywood trope. For Alex, it means she can easily sleep 16 hours a day and then still need a nap.
That results in not much of a social life and difficulty pursuing a career of any kind.
"I hate myself at times for it. It really invalidates your sense of self-worth, because we live in a society where to have value is to be productive, and I am not productive at all."
Alex's first diagnosis came at age four, which means she's been followed by specialists for 25 years.
Her experience with the medical system has been to complain about a symptom, and then have a doctor tell her she's actually perfectly healthy.
For example, in junior high she complained of intense back pain, and was told she needed to carry fewer books in her backpack.
"After a long time I started to believe [I was healthy]. I started to believe everyone must experience this, so … I should probably stop complaining."
Alex went along like that for a while. Then she had a flash of realization this past summer.
"I was watching a movie over Skype with a friend, sitting on the couch and I realized I was shifting around every five minutes or so because … I started having these shooting pains up my legs, and it felt like the couch cushions were burning me."
"I realized, this probably isn't normal."
That moment made her think about all of the symptoms she had been repressing.
"Whenever I go in now for a test or something, I sort of dread the results because I'm terrified that it's going to be another, 'It's negative, yeah we don't know, bye.'"
That happened again recently when Alex's sleep physician, after putting her on the three most common medications for narcolepsy, none of which worked, told her there was nothing left to try.
"I literally wanted to die when I heard that. I sank into one of the deeper depressions I've had in the last few years."
Despite the way her many illnesses affect her life, Alex finds great fulfilment working with online disability communities and raising awareness about rare conditions like hers.
What does she want people to know about living with an invisible illness?
"Understand that people with these invisible illnesses know what's going on in their bodies … they probably aren't malingering, they probably are telling you the truth."
This story originally aired on March 12, 2017. It appears in the Out in the Open episode "Invisible Illness".