I met a woman at a patient conference last year who confided she had just been diagnosed with narcolepsy.
She said because she knew next to nothing about the disorder, she immediately went online looking for the answers to her questions. I asked her if she’d found any helpful information, and she said, “Yes, but I’ll tell you: The internet can either enlighten you or frighten you.”
She went on to say that the next time she had a question about narcolepsy, she was going to talk to a healthcare professional.
I was curious, and asked her if she would mind me asking her a few questions about what she’s learned so far. “The biggest thing I’ve learned is finding support is essential. Unless you live with narcolepsy, you have no idea just how many areas of life can be impacted. For example, in addition to narcolepsy, I also have excessive daytime sleepiness. Because I’m constantly dozing off, I can’t put together a solid night of sleep. This makes me drowsy during the day. As a result, I no longer drive.”
I asked how she got her diagnosis, and she responded, “I finally had to see a sleep specialist because I was about to lose my job between calling out sick, and dozing off behind my computer. I had an overnight sleep study done, and they discovered I had irregular patterns in my REM sleep. Right now, I’m working with the doctor to learn how to manage my symptoms, but it isn’t easy. Fortunately, my boss now understands what’s going on and the company has made special accommodations for me. It’s a relief to know my career is no longer on the line!”
It was an interesting conference and I came away much more informed about narcolepsy.
If you would like to find a narcolepsy support group in your area of the United States, visit the Narcolepsy Network online.