Life With Narcolepsy

Stephanie Handy and Tracy R. Nasca, October 12, 2010

Stephanie Handy has narcolepsy.  At the time of this interview she is 25 years old and just weeks from receiving her diagnosis of narcolepsy with cataplexy.  Looking back over her life, she remembers symptoms as early as age 3.  She struggled through school and life; her undiagnosed condition was challenging not only to her but to her parents, family, classmates and teachers.  She was misunderstood and treated differently.  She was labeled a drama queen, called a liar, defiant, stubborn, lazy, unmotivated and much worse by those who thought she just needed to try harder.

Her story is not uncommon, in that narcoleptics are often misdiagnosed due to the lack of awareness of this relatively rare sleep disorder.  Narcolepsy affects an estimated 135,000 Americans, with up to half undiagnosed or misdiagnosed.

Stephanie has narcolepsy and many resulting challenges in her day to day life.  One of them is educating friends and family who may only see Stephanie as sleeping too much.  Some are suspect when they witness her Cataplexy, Micro Sleeps, Sleep Attacks or other affects of her fragmented and sleep deprived life.  How can she be sleep deprived if she seemingly sleeps so much?  It can be very confusing for people who have
no understanding of what it is like living with Narcolepsy.  Stephanie generously shares her experiences in this article, and says, “narcolepsy is hard enough to live with when you know what it is, but it was much harder before the diagnosis and the not knowing what was really wrong with me.”

Sharing her story is therapeutic, she says; a way to come to terms with her life and a way to educate her family and friends and all those who read this article.  Narcolepsy is hard to explain to others, textbook definitions just don’t relay the real life experience and so Stephanie, in this interview, provides her interpretation of what her life is like living with narcolepsy.

Cataplexy is a sudden loss of voluntary muscle control usually triggered by emotions such as surprise, anger, fear or laughter.  When in a mild form, it might cause a weak feeling in the limbs, neck or face.  In a severe form, it can cause a knee buckling drop to the floor.  The person is fully conscious and aware of their surroundings but cannot move or speak for seconds to minutes.

About Cataplexy, Stephanie shares:

People wonder, what does it feel like to have cataplexy?  Why do some cataplexy attacks look so strange? Why does my family think I’m faking the cataplexy?  If emotions trigger cataplexy, why can’t a narcoleptic just avoid being emotional?

Avoiding emotions is nearly impossible for a healthy person.  A narcoleptic, in effect, is sleepy all the time. A sleepy person has less control over their moods.  My cataplexy is most often triggered by laughter,
pleasure, or anger. I have experienced the various levels of severity with cataplexy from mild to a severe full body collapse. For me, my common episodes cause the knees to weaken and buckle, but often mild enough that I catch myself before a fall and injury occurs.  It resembles a quick stagger followed by pulling back to regain balance. Another mild form occurs in my neck and shoulders, causing my head to flop whichever way it was leaning when the attack started.  My shoulders will slump, and sometimes my back will also slump causing me to lean over.

A more severe episode will fully buckles my legs causing me to crumple down into a semi fetal position. I may appear frightened and a little dazed. When I was 13, I had a particularly scary cataplexy attack.  I was happily roller skating near my house when my knees suddenly buckled.  All I could do was brace my hands for impact.  When I hit the ground, I fractured my wrist.  Fully conscious, I was unable to do anything. I knew I had fallen, I knew my wrist was broken and as desperately as I attempted to scream or call for help, I could not move.  It took a couple minutes before I was able to scream and get the attention of a neighbor who brought my dad to help get me back to our house.  Back then, I concluded that perhaps I had tripped over a small stone.  Of course, that isn’t what happened; I reasoned that perhaps the inability to scream was because of the intense pain.  Maybe I had just been in such a state of shock as to be frozen in terror, that’s what it felt like. 

What does a sleep attack feel like?  Stephanie shares:

A sleep attack is a sudden and overwhelming urge to fall asleep.

During a sleep attack I find that my eyes will not stay open, blinking seems to take several seconds longer. As sleep comes suddenly I can feel my neck and head slump onto my shoulder.  My arms are relaxed and weakened.   I may attempt to sit or “fall” into the chair, sometimes injuring myself when sitting or laying down since I have decreased ability to control my descent. These attacks cause me a lot of grief.  I had several during my wedding reception, and have few memories of that day.  They can occur any place, any time and without warning.  I’ve had them at concerts, movies, watching TV, playing video games and even while reading books.  I don’t know of any activity I’ve done that hasn’t been interrupted by a sleep attack at some time in my life.

What is a Micro Sleep?  Stephanie shares:

A Micro Sleep occurs during wakefulness and usually only lasts a few seconds during which time the memory can be impaired and so the patient relies on automatic behavior. Automatic Behavior is when a person performs tasks and activities (from memory and out of habit) while awake and without recollection of the event. Essentially, it is a "black out" during wakefulness.

I frequently experience a micro sleep when I am house cleaning.  Once, I picked up my mom’s camera with the intention of putting it back where it belonged.  I still have no idea what happened to it.  Recently, I found something missing since 3rd grade.  It was the lost book fair money.  Eleven dollars was in an envelope in the back of an old school folder, it had been there all these years.   I never would have knowingly placed it in such a strange place had I not been so sleepy.   Over the years, I’ve had to pay for many lost books, and my grades suffered from misplaced homework. 

In the company of others and in a micro sleep, I am forced to ask people to repeat what they said, since I missed most of what was said.  I realized they are speaking to me, but couldn’t comprehend anything said. I might respond with a single or double word answer, often slurring the words as if I were intoxicated. My eyes might be sleep glazed, and I may not realize that I spoke when spoken to. Sometimes I would say, “in a minute.”  What I meant was, ask me again in a minute, when I will be able to know what you said. Micro sleep is strange; one can speak, walk, and do simple tasks all while being in a sleep state. I’m not uninterested; I just have no choice in the matter, I am sleeping.  What I mean is, I fell asleep while seemingly awake.

Stephanie shares a brief overview of her life living with the challenges of narcolepsy:

The most frustrating thing about having undiagnosed narcolepsy was the overpowering feeling of guilt.  I felt guilty for falling asleep all the time, guilty for losing things, guilty for not being able to get good grades, guilty for sounding whiny. 

The attacks of cataplexy got me the label of “drama queen”.  I was called a liar, defiant, stubborn, lazy, unmotivated and much worse by those who thought I needed to try harder.  I wouldn’t have minded so much except I tend to be a perfectionist and people pleaser.  Each accusation felt like a punch to the gut.  And to make things worse, I did not know why these things were happening to me, I couldn’t tell anyone why I was struggling.

If I told someone I was tired, they were more tired than I was.  If I said I forgot, I would be confronted with anger and told that I can’t use that excuse anymore.  It felt like each person I met would give me two chances to do better, and then they would turn on me.  My school years were particularly hard.  I spent more time in detention than I can count because I was often late for class.  No one had patience for someone who was always forgetful, always late, always emotional, and always sleepy. 

There was one person, who was helpful.  He was one of my middle school teachers and later, became my high school counselor.  He was a Christian, and as I struggled with my own faith, he was someone whom I could talk to about anything and he understood.  He always took me seriously. He provided many helpful ideas to help me get through the school day.   He managed to explain how frustrated I felt to my other teachers and thanks to him, they cut me some slack.  When I was at my lowest he helped me with some basic needs like organizing my schoolbag into something I could handle.  When I couldn’t manage to complete a project, he gave me the chance to redo it.  It felt like he was the only one who believed in me, whereas most everyone else in my young life made me feel like a horrible person. 

I've always loved drawing. I drew my first self portrait in 5th grade and have been drawing ever since. Shown above, is my 2009 self portrait.

In summary, Stephanie shares how it felt to finally receive her medical diagnosis:

When I finally received my narcolepsy diagnosisI felt relieved.  I had begun to think maybe I was insane, so knowing that I wasn’t crazy was the greatest feeling ever.  The diagnosis told me I wasn’t lazy or careless.  After so many years of being told I was a hypochondriac, the discovery that I was suffering from a true medical condition was thrilling.  The symptoms were not imagined, they were real.  I wasn’t pardoned, I was exonerated.  If I wasn’t so sleepy I would have jumped for joy; yet at the same time I felt pain for all that I had missed out on.  I haven’t finished college, I’ve never driven a car, I ‘m rarely able to complete tasks, and I’ve only had one job that I held for two and half days.  I’ll be starting the new medication treatment soon and am hopeful that my life will change in many positive ways. 

Watch for future articles by Stephanie written from her patient perspective and all about living with narcolepsy.