Patient Blogs | Sleep Disorders
Addressing the Stigma of Living with Narcolepsy
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I’m waiting patiently in the coffee line, desperate for an afternoon pick-me-up. The mom of three kids behind me says she should be in the front, because no one needs coffee more than she does. In front of me are my classmates -- who are going on 36 hours without sleep and had pizza and energy drinks for breakfast. There’s no way I could know what exhaustion really feels like. Before getting my narcolepsy diagnosis, people always tried to think of every excuse as to why I shouldn’t be tired. I’m too young to be this tired. Growing up, it was because I was busy with sports, dance, and schoolwork. I’m a woman, so my sleepiness must just be hormones. In college, it was because I was drained from all the studying, eating unhealthy meals, or being stressed.

Since sleepiness is often overlooked and attributed to another condition, people with narcolepsy face a negative stigma from the start of symptoms to diagnosis. It’s being sleepy without a “reason,” but sleepiness itself is not the “right” reason for concern. It’s the long and painful process of being misdiagnosed. ADHD, anxiety, depression, or thyroid issues are all common misdiagnoses. Hallucinations may be considered schizophrenia, and sudden muscle weakness (cataplexy) may be linked to epilepsy from a doctor’s perspective. Because of this stigma, it’s difficult to be open about sleepiness. Recently I was listening to another person with narcolepsy speak about her experience. She said something that described exactly how I felt before my diagnosis: “I’m not tired because I’m depressed, I’m depressed because I’m tired.” I felt depressed because I didn’t have the energy to take care of myself. I wasn’t tired because I wasn’t taking care of myself. I wasn’t taking care of myself because my symptoms consumed my ability to.

The worst thing is that I was made to believe it was in my power to control. I blamed myself because that’s what society taught me. If I would just get more sleep, stop eating junk food, drink more water, or be more active, I would be fine. Others try to compare sleepiness. Sleep deprivation is not a competition of who should be more tired because they did more. For many people, the battle doesn’t stop even after a diagnosis. It’s facing the hypocrisy when everyone says it’s OK to be on medication, but if you tell someone you take medication to stay awake, they respond by saying they wish they could get some of that. My medical condition is seen as a joke, but what they don’t see is that narcolepsy is so much more than just being tired. It’s also feeling like you’re walking through a dream and living life on airplane mode -- like your head is in the clouds, not receptive to the outside world.

After my diagnosis, the judgment still consumed me. When I told people that I finally had an answer for how I’ve been feeling, they still just thought it was a funny quirk that I have, rather than the debilitating chronic condition that narcolepsy is. I’m told I’m lazy, or I’m just faking it to get deadlines pushed. I see news headlines that describe people with narcolepsy as fakers to get access to certain medications. My lack of texting back to others translates to me being rude and unreliable. When I’m in the middle of a conversation and my brain completely shuts off, I’m told I can’t communicate. When I tell people about my sleep paralysis, I’m not taken seriously because it happened to them once before. When someone’s medical condition has symptoms that the average person can sometimes experience, that person is told their experiences are invalid.

I am not lazy, I am not faking it, and I don’t deserve your stigma and ableist comments because of an inaccurate portrayal that skewed your perception. Just because I learned to manage it well and now take a medication that works for me doesn’t mean I’m “fine” and don’t need support. My medication only temporarily masks the symptoms, and my quality of life is just made harder by these assumptions. This stigma is seen in health care, socially, and in our own personal battles, which is why diagnosing narcolepsy is such a process (even though it shouldn’t be). I encourage others to learn about the seriousness of the condition. Addressing this stigma starts with speaking up. The next step is for others to listen, be receptive to what we have to say, and respect the reality of living with narcolepsy.

 

 

Photo Credit: Westend61 via Getty Images

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Brooke Buckley

Brooke Buckley

Diagnosed since 2019

Brooke Buckley was diagnosed with narcolepsy in 2019 at age 22. After living with symptoms for about 7 years before receiving a proper diagnosis, she hopes to bring awareness to this misunderstood condition. Buckley is also a trained speaker and advocate with Project Sleep, and she enjoys playing tennis and hiking with her dog, Athena. Follow her on Instagram.

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