You wake up exhausted. You look at the clock and realize you have an appointment 15 minutes ago. instantly, shame Flood. You imagine what your colleagues will think when you miss something important and come back late again.
For many people living with narcolepsy, this is not an occasional inconvenience. This is everyday life.
Narcolepsy is a chronic neurological disorder This disrupts the brain’s regulation of sleep and wakefulness. While popular culture often portrays narcolepsy as someone who falls asleep mid-sentence, the reality is often more nuanced and significantly misunderstood. People with narcolepsy experience daytime sleepiness, nighttime sleep fragmentation, sleep paralysis, hallucinations, cognitive fog, and in some cases, cataplexy, sudden loss of muscle tone. feeling.
But one of the most psychologically painful aspects of narcolepsy isn’t the symptoms themselves. It is these symptoms that can mean a person’s character.
I saw this through my friend Meredith, who lives with narcolepsy and now works for a biotech company in the sleep medicine field. Before her diagnosis, she spent years blaming herself for symptoms she had no control over.
“For years, I blamed myself, was told I was lazy, and struggled with myself self-esteem“, he told me.
We live in a culture that often moralizes fatigue. Chronic fatigue, low energy, lateness, forgetfulness, or difficulty waking up are often interpreted as evidence of laziness, irresponsibility, or disorganization rather than as possible signs of illness. Over time, these assumptions can become internalized.
Invisible conditions are particularly vulnerable to this dynamic. If the symptoms are not obvious on the surface, people often feel pressured to prove that their struggles are legitimate. The result can be a deep sense of shame.
Meredith described spending years creating elaborate systems to compensate for her symptoms: several alarms were set up around the room, to sleep before important commitments at friends’ houses, permanent worry about oversleeping or looking insecure. Even socially, he worried about how others would perceive him if he was sleepy or absent from work.
“There are still times when I feel like I’m not good enough,” she admitted.
His experience as a neuropsychologist made me think about how little there is attention Sleep disorders are sometimes taken outside of sleep medicine itself. Sleep affects almost every domain we assess clinically: attention, memory, executive activityprocessing speed and emotional regulation. Yet during my training, narcolepsy rarely entered the conversation.
Part of the problem is that many people’s understanding of narcolepsy comes from exaggerated portrayals in television and film. Meredith says one of the stereotypes that upsets her the most is the depiction of cataplexy as a dramatic collapse.
“Hollywood tends to over-dramatize people who experience cataplexy,” he said. “People think of narcolepsy as a case of someone suddenly passing out and falling asleep in the middle of work, which is really not something that many people experience.”
For Meredith, finally accepting the diagnosis brought something unexpected: relief. “The diagnosis was the beginning of my journey with self-compassion,” she said.
Even after our conversation ended, this line stayed with me.
Sometimes a diagnosis does more than explain symptoms. Sometimes it reorganizes a person’s understanding of himself. Experiences that once seemed like personal failures begin to make sense through an entirely different lens. Shame softens into understanding.
This change was especially evident in Meredith’s current mindset productivity and relax.
“I saw my need for extra rest as a weakness,” she told me. “In a world where noise culture is glorified, I was afraid that my condition would hold me back.”
Looking back, he realized that constantly fighting his body often made things worse.
“I was stealing things that I needed to feel productive,” she said. “Ironically, that behavior was what stopped me.”
His insight speaks to a broader cultural problem that extends far beyond narcolepsy. We often equate energy with value. The ability to consistently produce, achieve, stay alert, and overcome fatigue is often seen as a sign of virtue. At the same time, recreation is considered arbitrary or weak if it is not “earned”.
But the body is not always like that to match to cultural expectations. And when that’s not possible, people often blame themselves before even considering that something deeper might be going on.
Today, Meredith speaks openly about narcolepsy and works to raise awareness of the sleep disorder stigma reduce He hopes more awareness will lead to earlier diagnosis and a more nuanced understanding of what it’s like to live with narcolepsy.
However, our conversation reminded me how easily invisible symptoms are moralized not only by society, but also by the people who experience them.
Sometimes the most powerful thing about a diagnosis is not just the treatment. Sometimes you are allowed to stop fighting yourself.
I am deep grateful Thanks to Meredith for sharing her experience so openly in this post. Meredith is engaged to Fox “Sleep” project and advocates for greater awareness and understanding of narcolepsy. You can find it LinkedIn. I talked to Meredith at length about narcolepsy. personstigma and self-pity in a longer interview posted on my Substack. You can read the full interview to here.
