I have been living with a sleep disorder for 15+ years and it has affected my every waking moment since.
When I hit puberty I started having trouble sleeping. I’d stay up all night and then go to school, come home and repeat the process all over again. I’d go for two or three days without sleep before finally crashing one night. On nights when I actually did sleep, I didn’t fall asleep until the wee hours of the morning and then getting up for school was nearly impossible.
My parents tried to be stern authoritarians: a talking-to here, a punishment there. Growing up in the ultraconservative evangelical community that I did meant that illness was equated to demonic influences and sin rather than biological processes. To their credit, my dad announced one night that my bedtime was being pushed back to 10pm. Unfortunately, it just wasn’t enough. Eventually I was taken to a sleep specialist who was able to diagnose me almost instantly after hearing my symptoms: Delayed Sleep-Phase Disorder.
Delayed Sleep-Phase Disorder is a neurological sleep disorder that’s a part of the Circadian Rhythm Disorder family of disorders. A circadian rhythm is the internal clock that helps people know when to sleep and when to wake using a mix of chemicals including serotonin and melatonin. In mild cases it can be treated with light therapy, melatonin supplements, and keeping a regular sleep schedule. In more severe cases, which are categorized by the number of hours offset a person’s sleep schedule is, there is very little that can be done except try to find a lifestyle that accommodates such a wildly different sleep-wake pattern.
The problem with sleep disorders is that it can be all too easy to mistake one for another. Idiopathic Hypersomnia is another neurological sleep disorder that causes a person to experience excessive fatigue but lacks narcolepsy (i.e. involuntary sleeping). People with this disorder essentially go about their day always being tired but when they sleep they don’t get the same restful recovery that other people do. Neurochemically speaking, the brain is frequently flooded with chemicals akin to being on heavy sedatives.
People with Delayed Sleep-Phase Disorder are sometimes diagnosed with Idiopathic Hypersomnia and vice versa, primarily because both are characterized by chronic fatigue. Two things that these disorders actually share is that they are not widely understood by society and they are life-altering disorders. They also share depression and anxiety as co-morbidities which is like an evil version of Netflix’s “People who watched this also watched” list of tv and movies but for health conditions.
For me, getting a job is often making a choice: do I try to get a second or third shift job and suffer the pay cut that usually comes with the type of work available during those hours or do I get a traditional 9-5 job and get progressively more sick because I’m not sleeping well? And getting groceries has always been a chore because I would have to go on a day off so that I could go in the late afternoon or early evening, but sometimes I’d get lucky like when I lived in Chicago I could grab groceries on my way home from work at a grocery store that was open 24 hours. Unfortunately most buses and trains in Chicago would stop sometime between midnight and four in the morning, which meant I couldn’t really go anywhere after a certain time of day.
My sleep doctor once told me that my disorder is the evolutionary answer to the question, “who will watch the fire while everyone else sleeps?” It’s a cute and comforting hypothesis, but there is still so much about sleep disorders that we don’t understand. Worse still is that society doesn’t understand sleep disorders and it shows in how much of the world is inaccessible. It’s why disability justice advocates like myself say that it is not our health conditions but rather a society that doesn’t care about those health conditions that disables us.
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