Eight to 15 years is a long time, especially when each day feels like you haven’t slept in 48-72 hours. It is a long time when you feel like you have no control of your body, and it is a long time to be living with narcolepsy without a proper diagnosis. Eight to 15 years is the average time between symptom onset and diagnosis, with at least 50% of people undiagnosed or misdiagnosed. By being educated, you help to understand the economic, social, and interpersonal battles that people with narcolepsy face.
Even after getting a diagnosis, the lack of education in the health care field still surprises me. Sleepiness is often brushed aside because it is considered a comorbidity of other conditions, even though narcolepsy has many other symptoms. When I say I have narcolepsy, people just think I’m tired all the time. It’s not just the sleepiness and daytime episodes, but also the hallucinations, excessive sleep paralysis, cataplexy, and disrupted nighttime sleep.
Health care professionals are often taught that each drug has a specific purpose, but narcolepsy doesn’t have a “one-size-fits-all” approach. When a person tells a doctor that they take a stimulant, their first thought is that they have ADHD. If they take an antidepressant to reduce REM sleep, the doctor’s first thoughts may be depression, anxiety, or other common misdiagnoses. If someone is tired, some doctors may say that their bloodwork looks fine so there must be nothing wrong. Because of low awareness, even among physicians, people with narcolepsy are untreated and left feeling ashamed of their symptoms. That’s certainly how I felt when my symptoms were brushed off as laziness and a lack of self-care.
I recently experienced the damaging stigma in health care during a hospital visit. The nurses started giving me an unknown IV medication without asking if I was taking any daily medications. When I asked the doctor if it would interfere with my other medications, she asked, “What’s that?” When I told her, she asked what they are for and then told me to ask my sleep physician. I left feeling concerned and frustrated. I can’t help but wonder if I wasn’t taken seriously because I’m young and look healthy, or if my condition didn’t seem serious enough. A few weeks later, I had a similar situation with another doctor, but this time I knew that I couldn’t take the prescribed medication. The interaction wouldn’t have been life-threatening, but that doesn’t mean it wasn’t a big deal. It concerned me that I had to explain that to the doctor. I’m glad I was aware of it and had the opportunity to educate the doctor as a person living with the condition, and not just a book chapter he read in medical school. I learned to be the expert on my condition and be my own advocate.
I never realized the burden that treatment for narcolepsy could cause until I saw it. Many people can’t get proper medication because of the financial impact. Narcolepsy can’t be cured, so patients rely on a lifetime of treatments to function as best as they can and have a good quality of life. Some insurance companies may not even cover the diagnostic sleep study, because they don’t see it as “medically necessary.” This turns people away from the beginning and leaves them thinking that it’s not worth it, delaying diagnosis even further. Sometimes, narcolepsy can prevent patients from having a stable source of income to afford the cost of treatment.
It’s important to be educated so you aren’t conveying misleading information. Recently, a new medication was approved for idiopathic hypersomnia, a sleep disorder that has similar symptoms as narcolepsy. I was so excited to finally share some good news about research and treatment for sleep disorders, until I read the headline of an insulting and disrespectful news article that was published. My heart instantly sunk as I read the aggressively formulated piece. I read how the author tied in narcolepsy with wording that that made me feel hurt and degraded as a person. What should be one step forward was two steps back for advocacy. When people want to talk about their condition or treatment, now there will be people that respond with something like, “I heard people are faking that now to get that drug.”
Don’t assume that because I carry it well, others “have it worse” than me. Educate yourself about the individual person with narcolepsy. Don’t think that because my medication helps, I don’t need an accommodation to do my job. Learn how you can help support me, but don’t treat me as if I’m incompetent. If I’m having a good day, don’t tell me I couldn’t possibly have narcolepsy or that I’m faking it. Don’t say that I’m being dramatic, complaining too much, or seeking attention. Saying that it could be worse and comparing my chronic condition to that one time you pulled an all-nighter in college doesn’t help me.
By getting to know my situation, you’ll realize that I’m not just going to pass out like in that one episode of Victorious you saw on TV as a teenager. I want you to learn, but I don’t want you to take it as a joke. You may see me nodding off and start to giggle and point … but what you don’t see is that my eyes are on fire, everything around me becomes an alternate reality, and it feels like I’m in a video game being controlled by another player.
People ask me if I’m worried about being negatively judged. I share my experiences for exactly that reason — so others can understand what narcolepsy really is. Many people say once they were diagnosed, they had no idea that it could be narcolepsy due to how it’s misrepresented. By being educated, you realize the impact it has on us and can help support us in ways that you may have never known.
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