I never would have guessed that I had a sleep disorder. Sure, I woke up feeling tired every day and struggled with my daytime energy, but I was convinced that I slept great. I fell asleep as soon as my head hit the pillow and slept 8-10 hours every night. When I asked my doctors about my fatigue, they never asked about sleep unless it was about insomnia. I knew I definitely did not have that problem.
I first complained to a doctor about my lack of energy at 16, but I didn’t learn the term “excessive daytime sleepiness” until 15 years later when I finally ended up in the office of a sleep physician. I went in circles with doctors who ran every lab and tried to track patterns in my energy levels. Many doctors suggested that my lifestyle was just too busy, but that never made sense to me. At each stage of my life, many of my peers were just as busy but they didn’t have the same struggles. In my early 20s, one specialist simply told me, “Some people just don’t have a lot of energy.” Eventually, I resigned to the possibility that it’s just the way I was.
Years of Fatigue with No Answers
I learned to prioritize school and work obligations because I never knew how long my energy would last. Waking up each morning was a struggle, often requiring help from others—like my mom dragging me out of bed for school. Morning headaches were common, but I just pushed on in the rush to get out the door since I was usually already running late.
Despite sleeping an appropriate number of hours every night, I had to nap after school every day. In college, I expected other people would sleep like I did, but I knew that wasn’t the case from the shock on my roommates’ faces after the first 6-hour nap I took in the middle of the day at my dorm. I learned to control my sleep drive and usually managed to stay awake in public—except for a few occasions, most notably the time I dozed off on top of a double-decker bus in London during my study abroad program, waking up a few stops past my flat and having to backtrack on foot.
While I was completing my Master’s in Social Work, I planned strategic naps to function. My “Wednesday nap” became a lifeline. My husband and I commuted to the same graduate school—we met working together in my first real job in the mental health field. Every Wednesday, I would bring a pillow and a blanket so I could sleep in my car in the underground parking garage after my class was over and he was attending his second class. We brought two sets of keys so he could get in when his class was over and drive us home. The cold Boston winters made it tough sometimes but the compulsion to sleep overpowered any discomfort.
While I never got out of bed chipper and energized, there were outlier days when I would wake up and know it was going to be “one of those days.” Along with my typical fatigue, I had a brain fog hanging over me and fought all day to stay awake, and neither naps or caffeine helped. I remember worrying the night before my wedding that my wedding day would be one of those days. Luckily, it wasn’t.
For all those years, I was more than “just tired.” Many patients who have chronic, unresolved medical complaints know something isn’t right, but become discouraged talking about the same symptoms and hoping for a breakthrough that has yet to come. I often stopped talking about my concerns for periods of time, until my frustration with my own body would motivate me to try again.
A Sleep Study Changes Everything
In 2020, working from home during the pandemic made my exhaustion undeniable. For weeks, I walked straight from my office down the hall to my bedroom for a nap immediately after work. Determined to figure out what was wrong, I created my own sleep diary, tracking hours slept, my daily schedule, energy levels, exercise, and my menstrual cycle. I wanted to show a doctor that any theories about my low energy in the past were not accurate.
Years before the problems with my energy started, I was diagnosed with a thyroid condition at 12 years old. It had always been stable, but I routinely had my levels tested. Armed with my sleep diary and a recent set of normal labs from my endocrinologist, I saw a doctor who considered diagnosing me with chronic fatigue syndrome but first, considered another possibility. “Maybe you should get a sleep study,” she said.
When I arrived at the sleep doctor’s office, I saw the Epworth Sleepiness Scale for the first time. I laughed as I rated myself at the highest likelihood for dozing off on almost every item. A few weeks later, the equipment for an at-home sleep study was delivered to my door, and soon after, I was diagnosed with obstructive sleep apnea. I couldn’t believe it. I was so eager to get treated that I didn’t think twice about getting set up with a CPAP device.
Almost five years later, CPAP is an essential tool that allows me to live a healthier, more fulfilling life, and I never feel embarrassed about it. I still experience excessive daytime sleepiness at times. Within the last year, I started an as-needed wakefulness medication for the days that my sleepiness is too much, but overall, CPAP has changed my life in significant ways. I am more present in my relationships and less likely to experience burnout at work. Looking back on the years I spent undiagnosed, I have to give myself credit for what I accomplished while unknowingly being chronically sleep deprived. That’s also one of the key messages that I hope to pass on to others who may be struggling to find answers: you are accomplishing so much despite your symptoms.
I never suspected that I could have a sleep disorder because I didn’t have the typical risk factors and I had never met anyone with a similar story. If I had, I would have advocated for a referral to a sleep doctor much earlier. Although my diagnosis is mild sleep apnea, my symptoms were severe and impacted my daily functioning in significant ways—something I’ve learned is not uncommon.
After starting CPAP, I posted about it on Instagram, not realizing there was a large community of patients on the platform. Through them, I’ve come to appreciate the importance of social support when navigating a sleep disorder. Hearing the experiences of others normalizes what I went through and keeps me motivated on my treatment journey. Inspired by their support, I became involved in patient advocacy to help reduce delays in diagnosis.
In 2022, I completed the Rising Voices speaker training program through Project Sleep, and I’ve been involved in advancing their mission ever since. Recently, I collaborated with several fellow patients on one of Project Sleep’s upcoming awareness campaigns. My hope is that by sharing my story, others struggling with unexplained symptoms will recognize themselves, seek diagnosis and treatment, and find a community of support and better quality of life. I also hope that for healthcare providers, my story will reinforce the importance of routine screening for sleep disorders and access to timely, effective care.
Source: SleepWorld Magazine March/April 2025
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