The Diagnosis That Eluded Me For 15 Years
TW: eating disorder
Do you ever get a feeling in your gut that something is deeply wrong? I had that feeling for 15 years. It started a few days after I returned from my first trip abroad as part of an arts program in college. My friend Ellary and I were seated next to a man who was ripe, and also seemingly very ill with the flu. I wish I had the experience to ask if we could change our seats; I wasn’t a seasoned traveler. Of course, we didn’t want to be rude. I’d often thought that if I could go back in time I’d have the confidence now to request to move. Yet, a couple of years ago on a flight home from Brussels I was seated next to a guy with a cold, and even after the flight attendant announced there were open seats available, I said nothing, to be polite. I spent the next 7 hours berating myself. I hadn’t known I still had that much work to do on my self-worth.
When the beverage service came to us, Ellary asked for a Diet Coke with lemon, bringing the wedge to her nose, returning to face the window. It wasn’t a good flight. It was too awkward to talk, and I was preoccupied with where my other seat mate was putting his dirty tissues.
I fell ill immediately. Like, got off the plane craving chinese food and by the time I picked it up, I thought I was going to pass out. I went to bed and couldn’t move for days; I’d never been so tired. When I called out sick from work for the week, my manager almost didn’t believe me. I was a good employee, but had just gotten back from two weeks’ vacation, so it wasn’t a great look.
Even after I recovered, things felt ‘different.’ It was my last semester of college, and I was working two jobs. It hadn’t been easy before, but now I felt a pronounced fatigue. When I started my new post-grad job, I found myself falling asleep on the train and having a hard time getting out of bed on the weekends. My body felt heavy. One Sunday morning on my way home from church, I realized I was too tired to even grab a bagel. I went back to my apartment and slept for the rest of the day. I made an appointment with my GP who tested my thyroid. I’d go on to have probably a dozen thyroid tests over the next decade. All came back normal.
I was convinced I had chronic fatigue syndrome, adrenal fatigue…or something worse. I started a new job and was terrified I wouldn’t be able to stay awake. Money was tight but I began buying coffee in the morning. I was torn- I wanted to explain to people why I couldn’t go out to dinner and to their birthday parties, but I didn’t want to lie when doctors kept telling me everything was fine. I missed out on my 20s. Meanwhile, I was tested for Lyme, blood cancer, anemia…my body was gaslighting me.
A couple of years ago, I was listening to NPR. Someone was talking about their recovery from their eating disorder which included their problems abusing an amphetamine for weight loss. I’d gained a few pounds and was convinced that if I could lose them I would have more energy to go to the gym, so I did exactly what she advised against, and searched the web. It turns out, those pills aren’t difficult to find if you’re good at googling. Within the week I’d found a provider to prescribe them to me.
What happened next made me forget all about weight loss. I woke up.
I woke up. The morning after taking this pill for the first time, I woke up on my own around 6:30 am for the first time since college, and my head wasn’t foggy or heavy. I didn’t have to leave for work until 8:30 am, so I started folding laundry. Then I ate breakfast, which I had never done at home on a workday. I was seeing the world through different eyes- the eyes of an average person. It wasn’t just being awake, it was the feeling of having more energy and no longer struggling through the day. I began to keep a diary that week, crying as I logged new discoveries. I could make plans after work and not worry if I’d be too tired to keep them. That alone opened up a whole new world.
Something was happening. I wanted to understand the connection, because whatever it was, this was the key I’d been searching for. It could also mean that whatever was happening to me wasn’t in my head. After over a decade of doctors telling me that everything was normal, I could prove that I wasn’t looking for attention. The answer I found was the last thing that I expected.
When I began having symptoms, I did what most people did — typed my symptoms into WebMD. I got a list of disorders that were possibilities, and things to rule out. I dismissed narcolepsy right away. I thought narcoleptics couldn’t control when they fell asleep. In grade school, a woman with narcolepsy was driving a minivan down the street where my friend lived, and had a sudden attack; she drove into a house with her kids in the back seat. Flash forward and I learned that there were different types of narcolepsy; she likely suffered from Type I with cataplexy, which causes uncontrollable loss of muscle control and collapse.
The medication I’d been taking was also used to treat narcolepsy, and the symptoms for Type II fit me to a T. I’d get 9–10 hours of sleep and still be tired: check. I heard doorbells and door knocks just before I woke up sometimes, and they were so real I often got out of bed to see who was there. Auditory hallucinations: check. I’d fall asleep on the subway and have elaborate, vivid dreams between stops. Going into REM sleep much earlier than normal: check. And most enlightening of all, narcolepsy is thought to be caused when someone is exposed to the flu virus, but the immune system mistakenly attacks and destroys the cells that produce the hormone that regulates wakefulness. The plane ride with the mystery man with the flu had always seemed a significant event in my life; now I knew why. Not all Type II cases begin with a viral infection though; narcolepsy is largely still a mystery.
It took months to get an appointment with a sleep specialist, and another year for my insurance to approve a sleep study. I’m now on my second medication trial after the first stopped working, which isn’t uncommon. I still don’t know that I’ve fully processed my diagnosis. It took so much energy to get here. Recently my toddler niece took a random nap on the deck after running around the yard, and my sister-in-law mused that she wanted to get her a test for anemia. I briefly panicked that my niece might have inherited narcolepsy. That would be incredibly rare, and she would be awfully young to display symptoms. But I knew I would be devastated if she had it. It gave me a new perspective and let me show myself a little more compassion.
There’s no cure. Unlike migraines, which I used to have, and was convinced I could find a cure for, I’m less driven by finding one for narcolepsy. I’m now focused on finding a daily routine that can work for me and learning how to take care of myself. It’s hard work. Having a diagnosis really does change things for the better, though. There’s being on the proper medication for one thing (and having insurance cover it, for another). And then there’s being able to plan my life. I wish I could go back in time and get diagnosed earlier. But the truth is, a recent study found the mean time to get a narcolepsy diagnosis was 14 years, so I’m not far off from the average. I don’t know what I would have done if I hadn’t tried that weight loss drug. I’d given up by then and thought of myself as a generally tired and unenergetic person. I’d wondered if my childhood trauma was a factor. I worried that it was in my head. It was awkward explaining to doctors that I’d tried questionable weight loss pills, but they didn’t bat an eye and I’m grateful my desire to get better was stronger than my embarrassment.
