Confronting Narcolepsy Stigma

Narcolepsy is a relatively rare health condition that is misunderstood by many people. Family, friends, teachers, bosses, and coworkers may see the symptoms of narcolepsy and assume the person is lazy, rude, unintelligent, or lacks ambition. The person with narcolepsy may even begin to think badly of themselves if they internalize other people’s perceptions.1

What is stigma?

When someone is stigmatized, it means others have a negative attitude or ideas about them. You might think of stigma as a mark of disgrace. However, a person with narcolepsy cannot “try harder” or “nap more” and make their symptoms go away. It is not a joke if they lose control of their body during cataplexy.

If stigma or prejudice leads someone to treat the person with narcolepsy differently, it is called discrimination. Stigma or prejudice refers to negative judgments made about a person or group of people that are unfair or untrue. Discrimination involves actions based on these negative beliefs.1

Stigma causes feeling of:1

  • Shame or self-blame
  • Hopelessness, loneliness
  • Secrecy or social exclusion

Stigma makes any person’s illness worse in many ways.

How stigma makes narcolepsy worse

Studies show that people with narcolepsy report lower quality of life than their peers. In fact, people with narcolepsy face stigma and prejudice at rates very similar to those with HIV/AIDS, epilepsy, and multiple sclerosis.2

A study from 2015 found that adults with narcolepsy are less likely to work, and more likely to be laid off or on disability than other adults. More than 30 percent had been let go from a job, a much higher percentage than average. The people in the study reported social rejection, financial insecurity, feelings of shame, social isolation, and fears about telling others about their condition. Not surprisingly, they were more anxious and depressed than “normal” people.2

Tips for dealing with stigma

Depression and anxiety are common among people with narcolepsy. The sleep attacks and cataplexy can cause embarrassment and get in the way of normal life. Some people isolate themselves for fear of collapsing in public. Plus, the episodes can be frightening because of the sudden loss of control.

Find a counselor or support group

Sharing your fears and frustrations with another person can help you cope with the stigma associated with narcolepsy. Whether that person is a therapist or friends in a narcolepsy support group, reaching out can reduce feelings of isolation and stigma. Ask your doctor or search online for narcolepsy support groups near you.

Find strength in numbers

Joining forces with others can give you a sense of empowerment and control. Ways to advocate for yourself and bring awareness to the needs of people with narcolepsy include:

  • Join for the nearest chapter of a national narcolepsy non-profit
  • Light up your social media accounts and participate in the #WhenIWakeUp awareness campaign, World Narcolepsy Day, sponsored by the Narcolepsy Network, or Rare Disease Day
  • Consider attending a medical conference that focuses on narcolepsy or sleep disorders. This can be a good way to learn more about your condition and new research.

Come out of hiding

You do not have to tell everyone you know you have narcolepsy, but it can be helpful for people you see often to be aware. This can be a scary step, especially if you have had negative experiences in the past. However, knowledge about narcolepsy gives others the chance to react with understanding and compassion instead of judgment or fear. Be ready to explain the basics of narcolepsy and what they can do to help you if a sleep attack occurs.

Wearing a medic alert bracelet can also help those around you if you suddenly fall asleep or cannot speak or move.

Join a clinical trial

Clinical trials help doctors learn more about narcolepsy, why it occurs, and how it can be better treated. Joining a clinical trial can be one way to try out up and coming new drugs or devices. Ask your doctor about any clinical trials near you or go to ClinicalTrials.gov to look up all the trials currently underway. National non-profits can also be a good source of clinical trial information.

Know your rights

With the right treatment, most people with narcolepsy can be successful in school and at work. However, some accommodations may be needed to make that success happen.

At work, the Americans With Disabilities Act (ADA) requires employers to make reasonable adjustments to the workplace or job duties for anyone with a disability like narcolepsy. Common accommodations include allowing 1 or 2 short naps each day, changing schedules, or changing duties.3

At school, teachers, coaches, and the school nurse should know if your child has narcolepsy. This allows them to understand your child’s symptoms during class and other activities. Naps, extra test time, and other accommodations can be made under a 504 plan.3

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Written by: Jessica Johns Pool | Last reviewed: June 2020