While sightseeing in London, England, Alex Haagaard went from awake and alert one minute to fighting to keep their eyes open the next.
They aimlessly walked around trying to find a possible place to rest and take a nap but the hostile architecture of the city only made it more difficult to find a safe place to lay their head.
Haagaard finally came across a coffee shop that was kind enough to let them close their eyes and nap for a while. However, their much-needed shut-eye did not come without snarky comments from other patrons surrounding them.
“Looks like someone had a rough night,” Haagaard recalls hearing someone say.
Unfortunately, this was not a one-time occurrence.
They have often overheard comments others would make assuming they were drunk, hungover or even high, but what those making the comments didn’t know was that Haagaard was experiencing a sleep attack — a common occurrence for those with narcolepsy.
Listen to Alex’s story by clicking on the audio reading.
One of the rarest sleeping disorders
Statistics highlight that narcolepsy is a very rare sleep disorder with data showing approximately 1 in 2,000 (0.05 per cent of the population) have this condition. By definition, it is a neurological disorder caused by an inability of the brain to regulate sleep and wake cycles.
Haagaard had to undergo four separate sleep tests. Doctors monitored their sleep by hooking them up to an array of sensors, tracking each breath, each heartbeat — narrowing down the possible diagnosis with each test.
After testing, Haagaard was misdiagnosed with idiopathic hypersomnia for three years before receiving the proper diagnosis of Type 1 narcolepsy.
In initial testing, one of Haagaard’s symptoms was missed. The defining aspect of their narcolepsy, like others, is a symptom called cataplexy — a symptom only present in those with Type 1 narcolepsy.
“I always thought I was really clumsy because I would dump food on myself and stuff.”
At a certain point after my diagnosis, I was sitting there and I was just holding a plate of salad and then I tipped it onto my lap. I was like, ‘Well, that’s cataplexy,’” said Haagaard.
Cataplexy affects the muscles, and for Haagaard this looks like episodes of overwhelming muscle weakness. It’s not a “full drop” like some may experience, but it still impacts them in a noticeable way.
In addition to their cataplexy, Haargaard’s sleeping patterns were far outside the realm of what is deemed “normal.”
For the average person, it takes 15 to 20 minutes to fall asleep, hitting the rapid eye movement phase (REM) within 90 minutes. Haagaard was falling asleep in 30 seconds and hitting REM within that same time.
A compounded condition
Haagaard’s narcolepsy is due to an underlying condition called mast cell activation syndrome, which is not the only chronic ailment they have. Like many others who struggle with a sleeping disorder, their narcolepsy is also affected by the effects of other ailments.
Being diagnosed with various auto-immune conditions, many have been present in their life since they were four — post-viral autoimmune disorders after a case of chickenpox — however, it took untill they were 30 to get most diagnosed.
“I’d been told, ‘You’re not really that sick. You know, there’s nothing really wrong with you. You just need to work out, eat better or whatever,’” said Haagaard.
Haagaard’s diagnosis didn’t come easy by any means. They went through a trial of medication and care from one specialist but after it was unsuccessful they continued to muddle through their days and struggles until one week they just couldn’t get out of bed.
“I lived off a block of marzipan in the cupboard for like a week,” said Haagaard. “I could get to the cupboard and grab a ton and [eat] that. That was as much as I could manage.”
Motivated to figure out what was wrong and get help, they continued seeing various doctors and specialists, participating in some trials and trying countless medications.
On one occasion, they had been recommended to a specialist for a trial and when they didn’t qualify, they begged for the chance.
“I begged them. I said, ‘Look, I need help!’ They were kind enough to take me on as a patient and for a few years there, I had the most incredible sleep doctor,” said Haagaard.
Haagaard has experienced both vicious cycles of hypomania and no sleep, as well as temporary relief through the various medications they’ve tried. However, getting access to the medication hasn’t always been easy.
Along with a laundry list of potential side effects, many of the medications come with a pretty price tag — some as much as $3,000 a month — which rarely seem to be covered by insurance.
Despite Canada’s universal health care system, issues remain and those like Haagaard have no choice but to bear those costs.
Haagaard’s personal experiences navigating their health and the health care system have motivated their advocacy in helping others — specifically those with chronic ailments and in marginalized patient communities.
With a background in biomedical science and visual arts, Haagaard has been pursuing a form of design activism through The Disabled List — a disability-led advocacy organization, pushing for accessible design — and other forms like Twitter threads.
Twitter is a largely used platform for many in the chronically ill community and allows Haagaard to connect with others and share their story. Though Haargrad stresses that they are not a medical professional, through their advocacy, they have helped others by providing information and resources to learn more.
“It took me so long to find the care that I need, and I had to, in the end, dig for a lot of that information myself. If I can sort of pay that experience forward and help other people to not have to go through that process of lacking care and struggling so much,” said Haagaard.