Addressing the Stigma of Living with Narcolepsy

By Paul Koffman
Updated 2024-03-24 14:07:34 | Published 2022-12-10 17:14:14
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    • Delve into the complexities of Sleep Disorders in this focused section of the iMedix Blog. Discover informative articles on conditions like insomnia, sleep apnea, and narcolepsy, along with their symptoms, diagnosis, and treatment options. This resource is essential for those seeking to understand and manage sleep-related issues effectively.

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As I wait in line for my much-needed afternoon coffee, I find myself stuck between a tired mom and sleep-deprived classmates. Before being diagnosed with narcolepsy, people always had excuses for why I shouldn't be tired. Whether it was because I was young and active or because I was a woman, my sleepiness was never taken seriously. Sleepiness is often overlooked and attributed to other conditions, leading to a negative stigma surrounding narcolepsy.

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Misdiagnosis is a common occurrence, with conditions like ADHD, anxiety, depression, and thyroid issues often being mistaken for narcolepsy. This stigma makes it difficult to openly discuss and seek support for sleepiness. I recall hearing another person with narcolepsy express a sentiment that resonated with me deeply: I'm not tired because I'm depressed, I'm depressed because I'm tired. My lack of energy made it challenging to take care of myself, and I felt constantly depleted.

The worst part was that I blamed myself, as society taught me to. I believed that if I just slept more, ate better, or exercised more, I would feel fine. But sleep deprivation is not a competition, and many people with narcolepsy continue to struggle even after their diagnosis. It's disheartening to face hypocrisy when people say it's okay to be on medication but dismiss the medication I need to stay awake as something they wish they had.

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Even after my diagnosis, the judgment persisted. People saw my condition as a funny quirk rather than a debilitating chronic illness. I was labeled lazy or accused of faking my symptoms to get special treatment. News headlines perpetuated the idea that people with narcolepsy are fakers seeking medication. My difficulty in responding to messages made me appear rude and unreliable, and when I experienced sleep paralysis, I wasn't taken seriously because it had happened to others before.

I want to emphasize that I am not lazy and I am not faking it. I don't deserve the stigma and ableist comments that stem from a skewed perception of my condition. Just because I have learned to manage my narcolepsy and have found medication that works for me doesn't mean I don't need support. My medication only temporarily alleviates the symptoms, and living with narcolepsy is still challenging despite appearances.

This stigma is present in healthcare, social interactions, and in our personal battles, which is why diagnosing narcolepsy is such a difficult process. I urge others to educate themselves about the seriousness of this condition. Addressing the stigma starts with speaking up, but it also requires others to listen, be receptive, and respect the reality of living with narcolepsy.

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