The Ugly Stigma Surrounding Narcolepsy

When you need help with a problem, where do you turn?

Many people these days turn immediately to the internet. From Googling to settle a bet to researching a doctoral thesis, people are relying more and more on the internet for help.

The same goes for finding support. If you or someone you love lives with narcolepsy, an online support group or a personal experience blog may be the best way to go. Just check out the mommy blog of Choya Porter.

Recently, this mom received overwhelmingly positive feedback as she wrote about her son’s diagnosis with narcolepsy and her struggles as his caregiver and protector.
Narcolepsy is often unfairly associated with laziness or a lack of intelligence.

The assumption is there that if he or she would “just try harder” or “nap more often,” the condition would magically go away. This is absolutely not the case. That’s why blogs from real people dealing with this disease are so incredibly important. They help combat the ignorance and stigma that exists in the world.

In reality, narcolepsy is difficult to diagnose and hard to treat because it can affect individuals so differently.
Many people also assume that narcolepsy simply means falling sound asleep at inopportune times. There is far more to it than excessive daytime sleepiness (EDS). Other symptoms include:
  • Cataplexy – the sudden loss of muscle control
  • Hypnogogic hallucinations – vivid, dreamlike, and sometimes frightening hallucinations that occur between waking and sleeping
  • Sleep paralysis – a temporary condition that occurs during waking or falling asleep, resulting from the body’s reaction to REM sleep.
A reminder to those who don’t understand the condition: narcolepsy isn’t a joke. There is nothing funny about not being in control of your body. Think before you laugh.

Do you live with narcolepsy and face social stigmas? Share your experience with us here!

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