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Living With Narcolepsy

Posted on November 10, 2021
Medically reviewed by
Allen J. Blaivas, D.O.
Article written by
Anastasia Climan

The impact of narcolepsy extends into all areas of life, from lifestyle choices to how you interact with people at work and home. Everyday struggles like exhaustion, sleep attacks, and sleep paralysis bring unique dynamics to parenting, traveling, and managing personal finances and medical care. Fortunately, with the right resources and support system, people with narcolepsy can find ways to manage their condition and take part in everything life has to offer.

Focus on a Healthy Lifestyle

Certain approaches such as managing your diet, exercise, and stress, can help make living with narcolepsy more manageable.

Diet and Exercise

Eating well and staying physically active can go a long way toward feeling your best with narcolepsy. Fiber-rich nutritious foods provide sustained energy to prevent blood sugar fluctuations that may contribute to drowsiness after meals.

Bursts of exercise work as a natural mood and energy booster. People with narcolepsy are more prone to depression and unexpected, rapid weight gain. Combining a balanced meal plan with regular physical activity can help you maintain a healthy weight, reducing your risk of other sleep disorders like sleep apnea that could complicate your condition. Developing healthy lifestyle habits and working with your physician to identify any other underlying issues will help you to stay alert and feel your best with narcolepsy.

Read more about diet and nutrition for narcolepsy.

Managing Stress

It’s no secret that learning to cope with stress is an essential life skill, especially when you’re managing a chronic condition. For people with narcolepsy, strong emotions, including stress and anger, can trigger cataplexy (sudden loss of muscle tone). Finding healthy ways to manage stress can also help prevent some of the anxiety and wakefulness that occur when you need to rest.

Ways to manage stress include:

  • Avoid alcohol and drugs.
  • Create a schedule to help prioritize your responsibilities.
  • Exercise regularly.
  • Practice deep breathing and meditation.
  • Schedule time for yourself to go to the movies, read a book, or get a massage.

Smoking

If you smoke, quitting is one of the most crucial lifestyle changes you could make for your health. However, some people with narcolepsy rely on the stimulating effects of nicotine to manage their symptoms. With the support of health care professionals and support groups, you can quit nicotine and transition to healthier narcolepsy treatments.

Even if smoking seems to help in the short term, people with narcolepsy are not immune to the adverse side effects of tobacco. Not only does smoking increase the risk of lung cancer, but the act of holding a lit cigarette poses an immediate threat if you’re prone to falling asleep unexpectedly.

How to Talk About Narcolepsy With Friends, Family, and Coworkers

If your family and friends have never known someone with narcolepsy, it may take them time to understand your experience. Finding trusted loved ones who you can confide in and rely on for support can bring greater joy and freedom to life with narcolepsy.

It’s not always necessary or advantageous to tell your coworkers that you have narcolepsy. However, filling them in can help prevent misconceptions about your behavior at work. If you experience excessive daytime sleepiness or cataplexy, your coworkers may make negative and unfair assumptions about you. Just as with family and friends, educating your close coworkers about narcolepsy may allow you to feel more at ease and better understood.

Start by confiding in your manager or someone in HR. From there, you can ask for advice on how to increase awareness about your narcolepsy to others. It’s up to you if you’d prefer to tell others on an as-needed basis (for instance, privately before a meeting) or if you’d rather let everyone know casually by email or through everyday conversations at work.

The news is yours to share, so you should never feel pressured to disclose more details than you’re comfortable with, whether it’s to friends, family, or coworkers. For anyone you decide to tell, be sure to mention if you’d prefer they keep the information to themselves or share it with others.

Working With Narcolepsy

Learning strategies to deal with narcolepsy in your workplace can help you stay ahead in your career. If you choose to disclose your narcolepsy diagnosis to your employer, be prepared to offer ideas and solutions that will help you be more effective at your job. Simple accommodations like squeezing in a short nap during your lunch break or using a sit-to-stand desk may help you stay alert and productive.

Sometimes, narcolepsy prompts people to rethink their chosen profession or take a break from work altogether. Finding flexible jobs that allow time for frequent breaks as needed can lower the stress of keeping up with a rigid nine-to-five schedule.

Read more about managing narcolepsy at work.

Disability Benefits for Narcolepsy

There are a couple of different federal programs that you can apply for if narcolepsy becomes a barrier to keeping your job. You may be eligible for Supplemental Security Income or Social Security benefits to help cover the loss of income. You’ll need several documents to apply, and it can take a few months for your application to be processed. If your first application is denied, you may need to go through a lengthy appeals process to continue pursuing help.

Read more about disability benefits and narcolepsy.

Navigating Family Life With Narcolepsy

A diagnosis of narcolepsy can change your role at home. The symptoms of narcolepsy, like cataplexy (loss of muscle control), sleep attacks (falling asleep suddenly), and excessive daytime sleepiness can make it difficult to drive alone or keep up with household chores. Narcolepsy often requires the whole family to make adjustments, not just the individual. Be sure to keep lines of communication open about when you need extra support.

Parenting With Narcolepsy

Despite its many rewards, being a parent is one of the most challenging and demanding jobs anyone could ask for. Narcolepsy adds another dimension to the task, especially if you have little ones who keep you up at night. Don’t be afraid to reach out for help when you need it. For instance, if you have trouble driving your kids to and from school or other activities, look into buses or carpooling options. Find out if there’s tutoring or assistance with homework if you’re struggling to keep up with the demands of your child’s education.

As your children get older, you can teach them more about your condition by inviting them to doctor’s appointments or educating them about the issues you’re facing. You may find that children can be a great support and ally to you as they mature and become more capable of helping with chores and other responsibilities.

Ultimately, every parent has to find strategies to balance their health with the responsibilities of caring for loved ones. When you have narcolepsy, this balance must become an even greater priority. Ask your physician for a referral to a social worker or family therapist if you’d like more help navigating parenthood with narcolepsy.

Traveling With Narcolepsy

Sleep disorders like narcolepsy can significantly affect your quality of life, including the ability to travel. People with narcolepsy may need to do a little extra planning to ensure a smooth and safe trip. But that’s not to say that long-distance vacations are impossible. Traveling with a buddy, setting alarms, timing your medication, and breaking up long trips to maintain a strict sleep schedule can boost your success and confidence while traveling.

Financial Burden, Cost, Paying for Meds

The difficulties of daily life with a medical condition are exacerbated when you add financial stress to the equation. People with narcolepsy or other chronic conditions often struggle to afford their medication and health care costs. Exploring the various resources available can help with the cost of prescriptions and medical insurance.

Costs for your narcolepsy care and treatment will be much more affordable if you have public or private health insurance, including:

If you do not have health insurance, or if you have insurance but need further support, you may find resources within your state to help cover medication costs. Some of the programs available include:

You may want to talk with a Medicare advisor or social worker about programs you may be eligible for that can help offset treatment costs.

Talk With Others Who Understand

MyNarcolepsyTeam is the social network for people with narcolepsy. On MyNarcolepsyTeam, more than 7,000 members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.

Are you living with narcolepsy? Share your experience in the comments below, or start a conversation by posting on your Activities page.

All updates must be accompanied by text or a picture.
Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Anastasia Climan is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

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