Know Our Stories: A Narcolepsy Blog

Matt

Relationships and Narcolepsy: Finding Partnership

There was a time when I was resolved to being a single dad for my kids because I didn’t know that healthy relationships were possible for people living with narcolepsy. Then, I saw a young couple at a narcolepsy support group who had a healthy, supportive relationship, and it gave me hope.

I knew I wanted a partner who would be supportive and who empowered me, but also kind of held me accountable–a person who would understand if I needed to be in bed by 8 o’clock. Ultimately, I think we are all looking for an accepting partner, and I’m grateful I found someone like that.

One of the things my partner and I have tried to really work on is adjusting the timing and types of activities that we do. At the same time, we try to focus on the importance of quality time together. I make sure I do stuff around the house so that she feels supported. But also, I try to do something special periodically that’s outside of my normal scope as a partner to brighten up her day. I think, for me, one of the greatest gifts my partner ever gave me was her ability to jump feet-first into narcolepsy advocacy. It allowed me to look for employment that empowered and supported me, and through that, I’ve been able to support a community of others living with narcolepsy.

I am so grateful that I found a true partner and that I’ve been able to show my kids what a healthy relationship can look like.

US–NAR-2300137/Nov 2023

Mike

Relationships and Narcolepsy: Setting Boundaries With Friends

I like to be spontaneous but I have learned that I need to be smart to set myself up for success. If I spend a three-day weekend packed with activities, what is that going to look like on Monday? Will I be able to wake up on time? On the other hand, if I’m going to spend all day Saturday doing chores around the house, what is that going to look like in the evening when I want to go out and see friends?

When it comes to setting expectations, sharing my narcolepsy story with friends made a big difference. At first, talking about my narcolepsy was difficult, but I feel comfortable sharing it now because of the supportive responses from my friends. Over the years, I learned how to better talk about my narcolepsy with people closest to me. That way, when I tell people I’m going to take a nap, nobody questions it.

It took some work, but I feel like I found my boundaries and set them with my friends. If I go out to somebody’s house, there’s got to be a spot for me to take a nap or stay the night if I need to. If it looks like I’m tired, everyone understands. Not only has this been helpful to me, it’s also truly strengthened the relationships in my life.

US–NAR-2300143/Nov 2023

Gina

Relationships and Narcolepsy: Setting Boundaries Personally and Professionally

I’m a high-conflict divorce and co-parenting coach. I help people who are co-parenting or going through divorce with a difficult or toxic personality, or who have a challenging situation. Part of my job is helping people set respectful boundaries in difficult family situations. Many times I find myself giving too much of my free time to clients and I haven’t enforced healthy boundaries for myself.

As a person living with narcolepsy, it’s so important to know when you can do something and when you need to take a moment for yourself. Yoga, meditation, and proper sleep hygiene are three things I prioritize for my self-care to make sure I can be present in my personal and professional life. If my professional life interferes with my self-care, I set appropriate boundaries to ensure I make the time to take care of myself. This might sound funny, but I learned recently about the do-not-disturb setting on my phone. It’s become an invaluable tool that helps me take the time I need for myself.

US–NAR-2300136/Nov 2023

Emily

Relationships and Narcolepsy: Asking for Help

Over the years, I have had to learn to speak up when something is bothering me.

I’m the kind of person who stays quiet when I’m struggling, even when it comes to my narcolepsy and excessive daytime sleepiness (EDS). If it’s been a rough day and I feel overwhelmed because of my narcolepsy symptoms or list of responsibilities, I have learned that it is better to communicate that I need additional support from my husband. I’m super independent, but I have learned that it is okay to ask for his help.

No matter how hard it may feel, sometimes I need to remind myself to slow down and communicate how I am feeling. I try to tell myself, “Emily, you have to ask and share what you need help with.” I remind myself to say things like, “Could you help with the dishes?” or to just simply state, “Hey, I need help with this.”

My husband and I have been together for over a decade. Over time, I have learned that it is best to communicate my needs, which sometimes just means asking for help on those tough days.

US–NAR-2300135/Nov 2023

Tim

Narcolepsy Diagnosis: A Lightbulb Moment

My symptoms started long before I received a diagnosis of narcolepsy. Prior to being diagnosed, at every physical, I would describe how I felt – a constant state of fatigue that I now know is excessive daytime sleepiness (EDS). I was repeatedly tested for thyroid function and glucose levels, and my doctor discussed the possibility of chronic fatigue syndrome. The tests always came back normal, and nothing seemed to fit. After years of searching for answers, I accepted that this was my life.

I knew something wasn’t right, but what could I do? I had no answers and nowhere else to turn. I remember walking down sidewalks and long hallways with my eyes closed just to find relief and rest where I could. I tried to convince myself that this was normal, that this was how everyone felt, and I was just somehow worse at dealing with it.

When I was 30, a friend came to visit me in New York. We talked at length about life and all its struggles. At one point in the conversation, she brought up her brother’s recent narcolepsy diagnosis. She described how he would have vivid dreams and nightmares, how he’s always sleepy, and how he would compare his symptoms to someone being awake for 2 or 3 days straight. The world seemed to slow down around me as the pieces fell into place; she was describing my life without knowing it. This was my lightbulb moment. From that conversation, I knew my experiences weren’t normal. And more importantly, I knew I wasn’t alone.

The next day, I found a board-certified sleep specialist and made an appointment. It was time to ask about narcolepsy.

US–NAR-2300138/Aug 2023

Tim

Talking About Narcolepsy: You Are Not Alone

At times it can be tough, talking to people about the symptoms of narcolepsy and sharing these experiences. When I mentioned feeling tired to my friends and family, everyone wanted to be helpful. They made suggestions like:

“Hey, have you tried yoga? Meditation? Breathing exercises?”

One friend even suggested I take a cold shower in the mornings. What I never heard, though, was anything like, “Hey, you should go see a sleep professional and you should really get this checked out.”

Eventually, I saw a specialist. After my narcolepsy diagnosis, I thought it would be easier to talk to people about the symptoms I was experiencing daily – like excessive daytime sleepiness (EDS). But it wasn’t as easy as I had hoped; I once told a friend I had narcolepsy and she said she didn’t believe me. She said, “I’ve never seen you fall asleep!” Although I smiled and laughed it off in the moment, I was hurt. Those words invalidated my experiences and left me feeling isolated and alone. I remember thinking that I needed to be tougher and that I might never be able to do the things other people could do.

At times, it feels like there is a stigma associated with narcolepsy. It can be challenging to talk about. So, when I hear people living with narcolepsy talking about feeling isolated, I want them to know they are not alone. There are narcolepsy advocacy and support groups online and on social media that can help. Reach out and become a member. No matter how hard it can be sometimes to talk about our narcolepsy, know that you are not alone.

US–NAR-2300139/Aug 2023

Scott

Living With Narcolepsy With Cataplexy: Felt Like A Short Circuit Within My Brain

Just prior to narcolepsy entering my life, I was on the highway to a bright and prosperous future. I was an excellent student, athletic, and driven to succeed. Then narcolepsy merged into my lane and knocked me onto a dark, lonely, and bumpy road full of twists and turns. Every aspect of my life was forever changed. Completing simple routine tasks became difficult, and people quickly developed less favorable impressions of me.

In addition to excessive daytime sleepiness (EDS), sleep attacks, sleep paralysis, hypnagogic hallucinations, nightmares, etc. – I began to notice another strange and unusual phenomenon known as cataplexy, which is a sudden loss of muscle control often triggered by strong emotions or certain situations. My first recollection of a cataplexy attack came while I was at a football game. Our team had just intercepted the ball and ran it back for a touchdown. We all jumped to our feet cheering, and for a split second everything just shut off. My knees buckled, and I instantly dropped the beverage I was holding. It felt like a short circuit within my brain and reminded me of how the lights occasionally flicker off for a split second during an electrical storm.

One of the worst cataplexy attacks I’ve had was when my wife delivered some devastating news concerning a family member. My knees instantly buckled as I was overcome with emotion. The second I regained temporary control, I immediately began walking towards a chair, which was several steps away. Each step I attempted to take, my knees buckled again and again, one attack after another, until finally I made it safely to the chair. It was as if someone operating a light switch in my brain was flipping the switch on and off repeatedly. Needless to say, this event scared my wife to death as she had never witnessed me having continuous multiple cataplexy attacks in a row. Scared me a bit also. Thankfully, I’ve never completely fallen to the ground during an attack.

Over time and as I experienced many more episodes of similar cataplexy attacks, I began to realize strong sudden emotions (laughter, excitement, sadness, anger, etc.) when in a standing position triggered these attacks. It took years of suffering from the life-altering effects of narcolepsy before I got help to manage my symptoms that has greatly improved my quality of life. Today, I am thrilled to say that my cataplexy has been under control for over 10 years and counting. Never give up!

US–NAR-2100176/Dec 2021

Scott

Narcolepsy With Cataplexy: Live Each Day to the Fullest

For those of us living with narcolepsy with cataplexy, at some point someone we care about may refer to us as lazy or even worthless. We may be accused of not trying hard enough, or making our condition out to be worse than it really is. After all, we look completely healthy and fully capable of functioning at a high level. Narcolepsy is truly an invisible disorder, a daily challenge on multiple fronts over a lifetime. It is my belief that to successfully manage this potentially debilitating disorder, there are three areas that need to be addressed to maximize quality of life:

Find the Right Doctor: For me, a neurologist who specializes in sleep disorders was critically important, but above all else, your healthcare provider should be someone who will listen, someone who is willing to work with you, and someone who is willing to take the time to educate your loved ones. Narcolepsy isn’t simply mind over matter.

Support from Family & Friends: It is essential to educate family and friends with as much information as possible concerning the effects of narcolepsy. It’s difficult to overcome every challenge alone. Support from family and friends is so important to successfully managing this disorder.

Believe in Yourself: No matter how difficult life can be when living with narcolepsy, do your best to remain in a positive state of mind. Never blame yourself for consequences beyond your ability to control. Practice thinking positive thoughts. Stay true to yourself, seek out the right assistance, live each day to the fullest extent possible, know you aren’t alone, and never give up!

US–NAR-2100232/Dec 2021

Andre

Being Your Own Advocate: Living With Narcolepsy

As a person living with narcolepsy, what does it mean to be your own advocate? For me, it began even before I got my narcolepsy diagnosis. Almost immediately after noticing narcolepsy symptoms, I asked for a referral to a specialist. When my doctor retired, it took time to find the right fit with a healthcare team and to find a new healthcare provider who had experience with narcolepsy.

After feeling like I was not being heard, I learned I had to communicate and advocate for my needs with no fear of judgment. When I found a healthcare team that considered my whole person when helping me manage my symptoms, I knew I’d found a good fit – a back-and-forth dialogue and exchange of information.

For anyone out there with narcolepsy who wants to start being a better advocate for themselves, I want to share important tips from my own experience:

• Ask your doctor questions from a place of trust and confidence, understanding that you both have a shared goal.
• See your relationship with your healthcare providers as a partnership that can help you find inroads to new tools and resources.
• Before every appointment, start with an honest inner dialogue. Ask yourself if you’ve followed the doctor’s previous recommendations and what next steps you might be willing to take.

Self-advocacy does not end in the doctor’s office. I also needed to educate myself if I wanted to speak up about my disorder. I read everything I could online about narcolepsy. I found narcolepsy support groups and connected to Internet forums. Finding in-person support was a challenge. So, I began creating my own opportunities to connect with others living with narcolepsy. In these relationships, I found that even if we didn’t have all the solutions, we could learn from each other’s perspectives. Between finding my voice with my healthcare providers and reaching out to others living with narcolepsy, I became and continue to be my own advocate. And speaking up has helped me take back control of my life.

US–NAR-2100234/Dec 2021

Gina

Living With Narcolepsy Day to Day: Winter Mornings

I’ve always wanted to be one of those moms, the kind that gets up at 5:30 in the morning. Maybe drinks a cup of coffee, goes for a walk and checks email all before the kids wake up. That quiet time in the morning always sounded like nirvana to me. Living with narcolepsy and excessive daytime sleepiness (EDS) isn’t always like that. For me, it can be more like a winter morning, when it is dark and cold, and you are under a heavy blanket. You just don’t want to get up. Then out of the darkness you hear: “Hey, Mom. You need to get up. I can’t find my favorite jeans. I need a lunch today. Take me to school. Have you seen my jersey?”

As someone living with narcolepsy, there are day-to-day challenges that I face. Right now, I feel like my symptoms are being managed well, but making plans with friends can still be difficult. Mornings, even on beautiful summer days, can be hard on some of us that are living with narcolepsy. Some days, I might nod off in the middle of eating dinner with my family due to my excessive daytime sleepiness. I’ve even fallen asleep at a rap concert. But mornings are the worst. No matter how much “sleep” I think I’ve gotten, the mornings always drag.

Over the years, I’ve found there are things I can do to help lessen some of these day-to-day challenges of excessive daytime sleepiness. Following good sleep hygiene, including a regular sleep schedule, especially naps, is essential. I’m a big believer in yoga and meditation. I’ve given up drinking alcohol – even a glass of wine with my friends can be disruptive to my sleep schedule. I’ve reduced the amount of sugar and carbs I take in. Most importantly, I’ve learned the importance of expectations and communication. I think by now my kids have gotten used to their mom not having a homemade breakfast cooking when they wake up in the morning. I was a little better when they were younger and they needed supervision every moment they were awake, but now that they are teens, and I’m a whole lot older, I do give myself a little more grace in the morning and save my energy for more important times. Helping the kids with their homework, supporting their sports, and my job (which buys those boxes of cereal they pour for themselves in the morning), are higher on my priority list than a quiet cup of coffee and checking email before they wake up. Communicating to my kids that mornings are on them has helped me manage the rest of my days. At least until someone loses their favorite jeans under the bed.

US–NAR-2100233/Dec 2021

Andre

My Days Living With Narcolepsy: Self-Care Helps

Imagine the most exhausting morning you have ever experienced. Remember how heavy every muscle in your body felt. Even the slightest movement seemed nearly impossible, let alone the idea of getting out of bed and starting your day. Picture that every day, maybe several times a day. Living with narcolepsy can be like that.

Some days I feel such a deep exhaustion, no matter how much I have slept. On occasion, I can’t even remember sleeping at all. Time slips away, and it can become difficult to distinguish between my waking life and a dream. I can feel gaslit by my own body, living a double life that feels unreal – hoping that I don’t make a mistake in either my waking life or my dreams. Living with my narcolepsy day to day can be hard, and that’s why daily self-care is so important.

My excessive daytime sleepiness and cataplexy impact my daily routine, whether working or taking care of my kids. To get through each day, I’ve focused my priorities. My time and energy are precious. I make the most of both when I can. I try to stay engaged with as many things as possible. I value play as much as I value more serious matters. I try to incorporate purposefulness and positivity into everything I do. I extend as much grace to myself as I can. I am mindful of when and where I eat, and how certain foods and drinks make me feel. I believe strongly in self-care, and I cherish being in places and around people who make me feel supported and welcome.

US–NAR-2100238/Dec 2021

Matt

Navigating the Holidays With Narcolepsy: From Fear to Courage

For many, holidays hold a few constants: family and gatherings. Both the presence and absence of family can elicit strong feelings. The stress of gatherings or the lack thereof can bring out strong emotions. The holidays can be a huge trigger for my narcolepsy symptoms, in particular excessive daytime sleepiness (EDS) and cataplexy. For years I struggled with an increase in sleepiness coupled with, at times, embarrassing loss of muscle tone. It wasn’t just negative emotions that brought about struggles, but also the positives ones. A hug from mom can be as impactful as the stress of holiday shopping.

When I was able to stop and examine what I could do to prepare for the holidays, the fear transitioned to courage. The excitement and joy of the holidays are as likely to trigger symptoms as the stressful moments, so it’s important for me to plan for my symptoms to interrupt the good times as well as the challenges. A quick check-in with a peer living with narcolepsy from one of my groups helps me stay accountable. Verbalizing my proactive approaches while supporting another helps me to feel “not alone.”

There is one approach I have found extremely helpful: getting out of bed. The biggest accomplishment every day is getting out of bed. Holidays are no different. Every successful day starts with my feet on the floor. It’s a challenge many days, but a reasonable goal. Success begets success. The holidays will come and go, and it is my choice to either embrace and celebrate or dread and despair. Like getting out of bed every morning, purposefully turning that fear into courage is the first step toward taking back control of how I experience the holidays, or any time when the pace of life can cause my EDS or cataplexy to interrupt the day.

US–NAR-2100236/Dec 2021

Matt

Navigating the Holidays With Narcolepsy: Building a Narcolepsy Toolbox

For years, the lead-up to holidays was full of anxiety and fear—knowing that disruptions were coming and feeling powerless. I had to shift the focus from dread to anticipation. I decided to approach the holidays thoughtfully—I knew what was coming, and that served as the foundation of my strength. There were going to be challenges, so I had to build my toolbox to overcome them.

Three of the strongest assets in my personal toolbox are saying “no,” naps, and cultivating a strong support network.

I had to decide who I was going to spend time with. That meant setting boundaries, limitations, and realistic expectations. I kept my foundation of support strong. My family of choice includes friends and family who add to my enjoyment of the holidays. Limiting stressors in my life meant using a word hard for many: “no.” To stay healthy, I had to realize there are more events than I can attend. Saying “no” to non-essential activities helps.

No matter how thoughtful I am about my schedule, sometimes the narcolepsy nemesis comes strong at events I choose to attend. When that happens, I reach for another asset in my toolbox, naps. Naps help for multiple reasons: they allow me to recharge while allowing me to stop and regroup. I keep a close eye on nap requirements and try to communicate accordingly. It has served me well to map out the best nap spot beforehand and proactively alert the host that I may need to step away.

There is only one person who looks out for my health all the time: me. So it makes sense that I had to create my own toolbox of tips and habits that help me navigate the holidays, or any of the busier times of the year when social requirements can be challenging for someone living with narcolepsy.

US–NAR-2100235/Dec 2021

Gina

The Search for an Answer: My Diagnosis of Narcolepsy With Cataplexy

Right before I was diagnosed with narcolepsy with cataplexy, I was a full-time working mom and wife. Life was chaotic, stressful, and at times unmanageable. Good times were sprinkled in – the birth of my children, watching them play sports, spending time as a family – but there was always this overlying chaos, a deep and constant stress and exhaustion. There was also constant guilt gnawing at me because I was watching other moms drop their kids at school with perfectly packed lunches, matching socks, and styled hair. Those moms would head off to their exercise class while I rushed back home to sleep a little bit longer before work. Not to say my kids were neglected, but some days school lunches had to do even though the girls preferred homemade.

My journey towards a narcolepsy diagnosis began when I mentioned symptoms of excessive daytime sleepiness (EDS) to my OB-GYN after having my second daughter. He immediately checked my thyroid and told me it was low and that may have been my problem. Fast forward a little while and I was still experiencing excessive daytime sleepiness (EDS), so this time I went to my family doctor. I was also experiencing sleep paralysis and hallucinations – which I later found out were hypnopompic and hypnagogic hallucinations – but I didn’t mention this because it sounded so strange. I thought that it might be just bad dreams. At first, I was diagnosed with attention deficit disorder (ADD). After working with my doctor to manage my symptoms, my excessive daytime sleepiness (EDS) improved, but my other symptoms continued to be an issue, so I kept searching. Eventually, I had my first sleep study conducted. After multiple tests, I received a diagnosis of narcolepsy with cataplexy.

After diagnosis and my doctor’s help, I felt a little bit of hope. No, I wasn’t crazy, lazy, or just too busy – I had narcolepsy. It explained so many years of my life. From falling asleep at the dinner table, taking naps after classes, nodding off during concerts in college, I was always the sleepiest of my friends. Having my eyes opened to narcolepsy has brought me some much-needed peace.

US–NAR-2100231/Dec 2021

Andre

My Narcolepsy Diagnosis: It Didn’t Change Everything

I love my family, and I love to cook. I worked hard as a chef. When I was home, I enjoyed making dinner for the kids and reading them stories. But I started to notice that I would nod off while sharing a book or playing games with my family. At that time, I didn’t know what was happening. I was working, trying to provide for everyone. I had convinced myself my excessive daytime sleepiness was nothing more than needing a little extra sleep. Over time, though, I couldn’t ignore the fact that I wasn’t able to do what I was routinely doing before.

Around the time when my excessive daytime sleepiness worsened, we moved and I started a new career. I was very interested in my new work but I struggled to stay engaged, or even awake. Not long after I started, a co-worker pulled me aside. He asked me if I was okay. I said, “of course I am.” His eyes narrowed. He had noticed me falling asleep while working.

When my co-worker called out my excessive daytime sleepiness at work, I felt defensive at first. Then he shared that he had a sleep disorder and suggested I get a sleep study. Thanks to him noticing and caring, I received my diagnosis of narcolepsy shortly after the study was conducted.

At first, I was, like, “What!?” I’d only heard that word, narcolepsy, in the movies. I was shocked. I felt like this disorder would cause me to stop everything I was doing. I begged the doctor to tell me my options. At first, I was in denial. It was new for me and for my family. As I learned more about narcolepsy and connected with others with the disorder, I realized I was still a father. And I was still a chef. I just needed a plan that included all of the things I loved.

US–NAR-2100237/Dec 2021

Matt

2022 Sleep Awareness Week: Raising Awareness Helps Everyone

Living with narcolepsy is not a punchline. We wake up every day feeling like we haven't slept for 48 hours, with periods of sleepiness where it feels like 72 hours without sleep. Extending compassion and understanding can make all the difference to someone living with narcolepsy. That is why raising awareness through exceptional programs and events like Sleep Awareness Week are so important.

For Sleep Awareness Week this year, my agenda will be ambitious and full, but above all I will prioritize proper sleep hygiene. Keeping track of my sleep routine and symptoms is a great way to monitor my sleep hygiene. Maintaining a consistent sleep schedule allows me to manage my symptoms and reduce profound episodes of sleepiness and cataplexy. Know Narcolepsy has a great journal to help keep track of sleep schedules and symptom severity. Prioritizing naps, both scheduled and rescue naps, helps me to function and keep symptoms manageable.

If I could give one bit of advice to people out there living with narcolepsy this Sleep Awareness Week, it would be -set realistic goals. Learning to fill my days with reachable goals for myself, as well as advocating for realistic goals from others, allows me to feel a sense of accomplishment. When I am unable to achieve one, I make sure to extend myself a little grace. And I never forget to celebrate every small victory, just as I could never forget to celebrate Sleep Awareness Week.

US–NAR-2200034/Feb 2022

Leah

Living With Narcolepsy: Honesty Just Might Be the Best Policy

I teach eighth grade. For a person living with narcolepsy, you might think that poses an insurmountable challenge. We've all heard the cliches about middle school children. And as those trying to manage narcolepsy symptoms know, people don't always understand what we are going through, or even what is happening to us at any specific moment. However, in teaching my students, I've discovered that understanding is gained through honesty.

Prior to my first year as a teacher, there were times when I felt like narcolepsy was calling the shots. But as my understanding of narcolepsy grew, I created some habits that helped me manage my symptoms, particularly cataplexy. While in college, I would put my hand under my chin during lectures to keep myself from falling over. Now, I can sometimes predict when I might experience a cataplexy attack. If I find something funny, I've learned to lean on a desk if I feel oncoming weakness. Greater understanding has helped me take back more control.

Being a teacher, however, has taught me something just as important. I've learned that I need to be honest about my narcolepsy. At the very beginning of every year, I tell my students about narcolepsy and cataplexy. This prepares them just in case I experience a more intense symptom during class. I don't want them to feel anxious.

I've also found that because I am honest about what affects me day to day, students connect with me about their own disabilities and differences. When that happens, I make a point of modeling how I slow down and look after myself, and how I want them to do the same. It may sound surprising, but I've found that sometimes kids are more understanding than adults when I talk to them about my narcolepsy symptoms. They often get excited and just want to learn more. In fact, I've come to believe that if everyone could be more like kids, maybe we'd all know a lot more about narcolepsy.

US–NAR-2200036/Feb 2022

Emily

2022 Sleep Awareness Week: Together Our Voices Can Help

Everyone knows what it feels like to be tired, but narcolepsy is much more than that. The symptoms can mirror so many other disorders. All are easily identifiable, but you need to know that they exist before you can start to ask questions about whether they are something you should bring up to your doctor. That is why it Is so important to raise narcolepsy awareness. And Sleep Awareness Week, which is March 13–19^th in 2022, is one of my favorite times to be active in the community and speak out about narcolepsy.

Whenever Sleep Awareness week comes around, I love to see how the narcolepsy community joins together to share narcolepsy facts. This year for sleep awareness week, I plan to share one video a day discussing a narcolepsy fact and how I personally relate to it. I have always been vocal on social media and being completely transparent about my diagnosis is important to me. People tend to pay more attention to content they can relate to, so I always try to show real elements of my life (family, home life, etc.) and detail how narcolepsy affects each facet.

There are many misconceptions about narcolepsy, but if I could clear up one of them, it would be that there is so much more to narcolepsy than just being tired. It's not being lazy or unmotivated. It's not about randomly falling asleep. It's not a convenient excuse to get out of obligations. It's a rare incurable disorder. It affects all aspects of life - work, family, and friends. We can combat this type of misconception together by reaching out and trying to educate as many people as we can. Whether you are an active member of the community or a silent observer, Sleep Awareness Week is a great time to raise your voice and tell your story. You never know If a tip or experience you share could make a real difference in someone else's life.

US–NAR-2200035/Feb 2022

Andre

Working With Narcolepsy: Tips and Habits to Help Throughout the Day

As a chef, my work environment often alternated between the frantic hustle and bustle of a large kitchen and the silent solitude of preparing larger family-style dishes as a private caterer. As a person living with narcolepsy, either scenario could pose challenges, from the inherent risk of the tools of my trade to the need to maintain strict and often near impossible timing. Over the years, I've found some habits that have helped me manage my narcolepsy symptoms while on the job.

One adjustment I made at work to help manage my symptoms was the use of forethought. I try to look at the whole expectation of my work and make a plan best suited to time out meal preparation and service. Selecting tasks that I could pace around my most wakeful times was important for productivity. Music is a fun tool I found to help me during workday as well. Putting on something up-tempo helps cut through the stress of those approaching deadlines.

Another habit that has helped me represents one of my favorite things about being a chef-teaching. I have found that teaching is often as much about learning. That helps me focus not just on my tasks, but also how I convey them. This self-reflection takes place outside of both the comfort of solitude and the busy hustle and bustle. Teaching forces me to slow down to convey the message.

Finally, and maybe most importantly, try to find a job that provides you a vested interest perhaps beyond making ends meet. If you can work in an area of interest - great! For me, I take enough pride in what I do that I try to get it right, versus just getting it done. Seeing value in your work leads to fulfillment, which I find so important.

US–NAR-2200033/Feb 2022

Leah

Parenting With Narcolepsy and Cataplexy: Finding Peace in What I Can Do

When my daughter was born, it felt like I met someone that I already knew. Even then, I imagined seeing the world through her eyes. Laughing along with her as she grew and learned so many new things. I held her in my arms, and the warmth of her little body made me feel so complete. At the same time, I was also kind of scared. She spent a very short time in the NICU, which was difficult. But it was more than that. I wasn't just a new mom experiencing those beautiful first few moments with my daughter. I was also a new mom living with narcolepsy.

I wondered how my symptoms, excessive daytime sleepiness and cataplexy, would impact my ability to parent. I was worried that I wouldn’t have enough time or energy to manage everything. My biggest challenge living with narcolepsy is extreme daytime sleepiness, and I knew raising a baby would only add to it. I remember thinking that the time I lost to napping would make me feel like an absentee parent. It sounds silly, but I was also terrified that my cataplexy might cause me to drop my little girl.

As my daughter and I navigated those first few months, I learned ways to balance being the mom I wanted to be and managing my symptoms. I realized that some things could wait. I didn't have to have the cleanest house, and I could ease back into my workout routine. I saw that time as a season in our lives and started to prioritize what made us feel complete and healthy in the moment. I learned to stop judging myself by impossible standards. I know that even moms without narcolepsy can feel shame and guilt. So, each day I try to find peace in what I CAN do, rather than regret all the things I didn’t get done.

US–NAR-2200090/Jun 2022

Emily

Managing Relationships While Living With Narcolepsy: A Challenge and a Gift

If I had to describe narcolepsy, it's like a constant state of exhaustion caused by excessive daytime sleepiness (EDS). The tiredness can make it hard to concentrate, hard to get moving in the morning. And it certainly makes accomplishing everyday activities a challenge. I find myself allocating the limited times when I feel ok to those activities that are the most vital, particularly managing the important relationships in my life.

My EDS certainly presents a challenge to my social life. I make plans when I feel ok but have to cancel when the exhaustion strikes. I try to build flexibility into the plans I make with people. Communication beforehand really helps. I tend to keep my friends updated on how I am feeling. I also try to schedule time later in the day. That gives me a chance to fully wake up. Good sleep hygiene is another excellent tool. I make sure I get a good night's rest every day and I stick to a consistent bed routine. These habits help fight the exhaustion and let me be more present with family and friends.

Narcolepsy makes it difficult to manage the important relationships in my life. At the same time, the support I get from those same relationships, especially my husband, can be vital to managing my narcolepsy. That's why focusing on spending time with my husband and my friends doing different activities outside the house is a top priority. Luckily, my husband likes to join me in some of the habits I've found that help manage my EDS. He shares the same bed routine and he's tried some dietary adjustments, as well. The support of someone important to you can really help motivate changes in behavior. And I think he's found that the changes have helped him feel a little bit better as well.

US–NAR-2200037/Jun 2022

Scott

Parenting With Narcolepsy and Cataplexy

Before narcolepsy unexpectedly entered my life, I dreamed of one day having a family of my own. I wanted nothing more than to be a dad. However, when my daughter was first born, I was at a low point. Narcolepsy was dominating every aspect of my life. I was no longer able to make it to work on time, and some days I didn’t make it at all. I spent the majority of my time at home lying on a sofa. I was not capable of being the husband or father my family deserved. The guilt I felt was unbearable. I felt worthless.

One evening I was in my normal horizontal position on the sofa, my wife was sitting in a chair, and my daughter was on the floor playing with her dollhouse. My daughter began getting frustrated with something she was trying to accomplish. My wife asked her: “What’s wrong sweetheart?” She replied: “It’s Daddy! He keeps falling off the sofa." She then pulled the dad figure and the couch out of the dollhouse, handed it to my wife, and asked her if she could make him stay on the sofa. I hid my face in the pillow and cried. I didn’t want my daughter or anyone to see me like this.

That moment was a turning point for me. I refused to allow this disorder to destroy me and my family. I began meditating and changing my thoughts from negative to positive. When you tell yourself you’re a burden, worthless, miserable, exhausted, etc. – you can expect to remain in that negative energy. Despite how miserable I felt, I continually told myself there is a greater purpose, I feel great, I create my own destiny, and most importantly: I am a good parent and a reliable husband.

Slowly but surely, the change in mindset began opening new doors that greatly improved my quality of life and transformed me from a couch potato to the dad/husband I always envisioned myself to be. Narcolepsy no longer controls my life, and I’m proud to say I’ve lived up to my own expectations regarding marriage and being a parent. I could never have made such a transformation if it wasn’t for a belief in myself and support from my loved ones. Never give up!

US–NAR-2200092/Jun 2022

Scott

Managing Relationships With Narcolepsy and Cataplexy: She's My Rock

I have compared living with narcolepsy to driving on a dark, hilly, secluded road full of unexpected twists and turns with more downs than ups. One of my darkest periods was after I was married and our daughter was born. Despite having support from loved ones, I felt very much isolated, as no one could relate to my daily struggles. It became increasingly difficult to accomplish routine tasks most take for granted. The grass wasn’t getting cut and the weeds grew taller as I found myself lying on the sofa most days doing absolutely nothing. The guilt I felt was unbearable: This wasn’t how I wanted to be living my life. I grew distant and started pushing people away.

It got to the point that I pled with my wife to leave me. I wanted her to be free from me. I believed I had become a burden on everyone and didn’t want to hold them back in life. My wife and daughter deserved a better life than the one I could provide. Thankfully, my wife refused. She asked me: "If I had cancer, would you leave me?" I said: "Of course not." She then said: "I’m not leaving you – you are stuck with me." She is my rock.

If a significant other continually tears you down, sometimes it is for the best to remove yourself from negative situations, as support from loved ones is so crucially vital. I consider myself one of the lucky ones to have a spouse who truly supported me through difficult times until I was able to overcome the negative effects of this life-stealing disorder. Today, narcolepsy no longer dominates my life. For those living with narcolepsy, stay true to yourself, seek out the right assistance, and live each day to the fullest. Know you aren’t alone in this battle and never give up!

US–NAR-2200093/Jun 2022

Emily

Asking for Accommodations in the Workplace

I’ve been diagnosed with narcolepsy without cataplexy for 12 years, so I’ve had years to work on and perfect my work routine. My work schedule is mostly consistent through the month, other than the 2 to 4 days that I come in 1 hour earlier to approve timesheets or attend staff or committee meetings that I’m a part of.

Throughout my work day, I keep a digital to-do list open while I work with detailed notes so I always know where I am and what needs to be done, and I can prioritize in a way that maximizes my efforts during the time I’m most awake and alert. I tend to work on tasks that require more effort in the morning, or right after my planned afternoon nap. I utilize my nap accommodation in the 1:00 PM to 2:00 PM range, when I know my body and mind need a break the most. I get up from my desk and walk around for a couple minutes if I feel I am getting too tired.

To request the accommodation, I started with the online resources on my company portal. This allowed me to look over the information required and what steps to take before reaching out to Human Resources (HR) for the formal request.

I knew from previous research that I could disclose as much or as little information about my diagnosis as I wished. I felt that supplying my manager with more detailed information was personally better for me, especially knowing how some can perceive narcolepsy. When the day came and she asked for more information about the accommodation request, I shared the major facts about narcolepsy: that it is a rare, neurologic disorder that affects the brain’s sleep/wake cycles. I shared the 5 major symptoms and how those symptoms affect me. I also explained how the accommodation would have a positive impact on my work. I feel that the explanation gave her a clearer understanding of why the request was being made, and a better picture of me as a person. Much of the information I use to communicate my narcolepsy diagnosis to my manager and coworkers comes from the Rising Voices program, an advocacy speaker program from Project Sleep, that trains people with a narcolepsy diagnosis to share their stories through a factual and personal approach. I have found that the way narcolepsy facts are laid out within my presentation also works well to use in dialogue with others. It enables me to get the major points across without an overwhelming amount of detail.

If I plan to start a new job in the future, I will be selective about if and when to communicate my diagnosis to my manager. I would want the new employer to see me as a person, my work ethic, and my experience before seeing my diagnosis. I feel that sharing my diagnosis has a lot to do with the connection and trust I have with my manager, and that sharing it is mutually beneficial.

US–NAR-2400106/Aug 2024

Mike

Talking About Narcolepsy in the Workplace

I currently work a hybrid schedule where I work from home 2 days a week, and work in office the other 3 days. I trust the company I work for and have colleagues I’m very connected with, so I felt comfortable sharing my diagnosis because I feel like it gives a little perspective on my life. I hope that because I'm willing to share something personal about myself, it will allow the other person to share the same, opening the door for all sorts of possibilities.

When applying to jobs, I choose to be upfront during the application process, indicating that I am living with a disability. The topic has not come up in conversation during interviews for me. If I receive an offer, I am upfront to get ahead of any misconceptions and also to make sure to put an accomodation plan into place.

When asking for accomodations, the first question I ask myself is, “Do I want this?” I make sure to identify what I want or need and be prepared to share it with my company. In my experience, companies I’ve worked for have asked me what I was looking for in an accommodation and then tried to find common ground. Each state and industry has unique rules about accommodations, and it was important for me to know what my state allowed so I could come prepared for the conversation.

Once I knew my rights, what I wanted or needed in my workplace, and felt comfortable sharing, then I could move on to the next step, which was asking for what I needed. It was important to remind myself that no one will advocate for me better than myself. I had to lead the conversation, because I know what I need to be successful in the workplace.

Some resources I’ve used to have these conversations with my colleagues and managers are Know Narcolepsy, Project Sleep, Wake Up Narcolepsy support groups, and other social network sites.

Even when I was able to find common ground and accomodations at work, they asked me to update them on an annual or bi-annual basis. At times, it felt like I was defending whether or not I needed the accomodation. I had to be strong enough to know that I may have to fight for myself.

If I can remember to do all that and keep a positive attitude, I will set myself up for success for a long and healthy career.

US–NAR-2400105/Aug 2024

Matt

Know What You Need to Succeed

The way I set myself up for success at work is to have a balance in scheduling, naps, and incorporating the Pomodoro^® Technique. This technique is a time management method that involves working in blocks of 25 minutes with short breaks in between. I work hard to schedule meetings when wakefulness is at its peak so that I can maximize my contributions. Prioritizing tasks throughout the week and individual day has been imperative for me. It’s hard to anticipate symptom severity, but building in flex time for project completion helps me reduce the uncertainty of sleepiness.

There are multiple lines of thought about when to mention a diagnosis at work, but for me, I tend to err on the side of caution and only share when/if needed. If I needed to share my narcolepsy diagnosis in order to request an accommodation, I would connect with Human Resources (HR) or my supervisor in a private setting. I would begin by reiterating my desire to complete my assigned tasks and disclose that I live with a chronic disorder called narcolepsy. Then I would share that there are some reasonable accommodations that will allow me to better complete my essential job functions. Lastly, I would inquire about the steps I would need to complete and who I would need to follow up with.

My accommodations are shared on a “need-to-know” basis, so only people who directly supervise or have essential overlap will need to know. In past instances, I have found it helpful to share with select co-workers that I have an accommodation in place if I feel that will best suit my working environment.

I rely on Project Sleep’s Rising Voices videos to help explain life with narcolepsy. Sometimes I found it more effective for coworkers to hear the message through a different voice. There are also several pertinent infographics from the advocacy organizations (and Know Narcolepsy).

Pomodoro Technique is a registered trademark of Combinant Dynamics Consulting FZCO.

US–NAR-2400104/Aug 2024

Shannon

Social Support

I was dumbfounded upon receiving my diagnosis of narcolepsy type 1 with cataplexy in 2010. I was desperate for more information on this quirky, misunderstood disorder that had managed to insert itself into my life so quietly, yet profoundly. While I had an amazing support system within my family, friends, and faith, I still felt alone. I craved feeling normal and meeting another living, breathing, sleep-challenged human, just like me. When I attended a live support group that my new sleep specialist had recommended a year later, it was incredibly helpful for me. No explanations needed, no judgment—just bonding over a sense of normalcy that I had not felt in a long time.

Over the years, I have found it more beneficial to give a brief description and let others ask questions as they want. To me, the sincerest compliment is when someone invests the time to listen, and even goes the extra mile to research on their own to help unravel my condition; it makes me feel valid and cared for.

Support looks different for everyone, and each person has their own unique experience living with narcolepsy, which can also change over time. When my daughter was younger, I needed more help, specifically if I was feeling sleepy or had brain fog. My friends and family have been so accepting, and will let me nap at their homes when sleep is inevitable and understand when I need to change plans, even when it’s the last minute.

My advice to anyone who is newly diagnosed would be to do your best to positively adapt to the changing world around you and give yourself grace when you can’t. There are many online advocacy groups to help you and your support system more effectively comprehend living well with narcolepsy. You have many options when it comes to online support groups; either social media groups or advocacy groups that also provide Zoom-style interactions…I’ve learned so much about myself and how narcolepsy affects me by listening to others’ real-life experiences. Finally, there are live support groups in some areas that meet regularly.

Each person has different needs when it comes to social support. One thing I do know is that I am enough, and so are you. Reach out for the support you need, however that may look. You are worth it!

US–NAR-2400085/Aug 2024

Matt

The Power of Social Support After a Narcolepsy Diagnosis

Social support can take many forms, from connecting with a peer living with narcolepsy, to online group support, to social media interactions. The real power of social support is twofold: it means not facing life with narcolepsy alone, and it also means embracing and benefitting from the collective wisdom of others’ life experiences.

Social support is a cornerstone of managing life with narcolepsy. Project Sleep, an advocacy organization dedicated to raising awareness about sleep health and sleep conditions, has identified pillars of narcolepsy management. Some of these pillars include naps, lifestyle adjustments, and social support. Without equal support across these areas, my ability to balance daily life wobbles. It is analogous to a table with four legs and one being unequal length. The table will stand upright, but it isn’t as sturdy. Social support affords a collection of experiences and wisdom to build upon. It allows one to learn from the mistakes and successes of others.

People living with narcolepsy, loved ones of people living with narcolepsy, close friends and family, and others living with chronic illnesses can compose a social support network. It doesn’t always have to be another person with narcolepsy, but to me, it does require someone who will listen and empower you.

Each person in my support network offers a different form of support. In most cases, I want someone who will be a good listener, but not someone who will cosign my every word. In some instances, I want someone who will joke with me. In other instances, I want someone who will ground me and push me to grow. It is up to me to understand who to reach out to if my needs vary. In general, I look for empathy, candor, and authenticity. It has taken me a decade to learn this, but it is my responsibility to ask for the support I need. It isn’t realistic for anyone, even my support network, to implicitly know what I need.

There is no “one-size-fits-all” approach to social support. The only universal is the need for a support network. For me, it is important to reach out to peers for guidance and support. The path to acceptance is a meandering road and it’s easy to get turned around, but having support on that journey makes all the difference.

US–NAR-2400103/Aug 2024