Beginning in 2006, I slept 12 hours most nights and often took a two-hour nap in the afternoon. I wasn’t lazy — I was exhausted. I talked slowly, moved slowly and had difficulty driving because my brain couldn’t keep up.
Loud and fast talking was unbearable, and I couldn’t string words together fast enough to understand the books I tried to read. In the rare moments where the fog lifted, I blissfully read, cleaned and lived my life. But always within a matter of hours, the heaviness always came back.
My doctors had chalked my symptoms up to just about everything: fibromyalgia, depression and even somatoform disorder, which is basically physical pain because of psychological problems. The disorder is predicated on the assumption that the patient is so concerned with her symptoms that she’s actually causing them to happen.
“I can’t believe this!” my aunt yelled, when the highly regarded neurologist handed me information on somatoform disorder. But when her own guess — lupus — didn’t pan out either, even she began to question the validity of my symptoms. Not that I blamed her. I often questioned their validity myself.
When an earlier test for multiple sclerosis came back negative, that doctor said my symptoms might have to get worse before any test would show what I had, which turned out to be the most accurate feedback I’d ever get until my diagnosis. I just didn’t know I’d have to wait five years — through grad school (where I missed half the classes I took and taught) and two years on disability, during which I made $300 a month writing $10-a-day mini-articles.
While on disability, I was assigned to the low-income state clinic. The doctors there worked mandatory hours during their residencies, and none seemed very happy about it.
One doctor told me I was too highly educated to be sick. My assigned social worker said I must have OCD because I kept talking about things I couldn’t do.
Since I was brown-skinned (and worse than that, black), most doctors assumed I was just being lazy — apparently “too educated” to let myself fall into such aberrant thinking. Other health concerns complicated things further, as I would soon be diagnosed with very real depersonalization disorder and already had a premenstrual dysphoric disorder diagnosis, both of which also played into my brain fog. Additionally, since both conditions have anxiety at their center, doctors brushed off my concerns as an inability to handle daily life.
When I began having waking hallucinations, I didn’t see a doctor right away. After all, it’s scary to admit to hearing voices, and somatoform disorder places patients in a double bind: Seeking help for symptoms is believed to be a symptom in and of itself. I didn’t want to appear obsessively focused on my concerns, but at the same time, I desperately wanted my life back.
My hallucinations always happened between sleep and waking. First, I often hallucinated my best friend and roommate murmuring on the phone or music playing in a neighboring condo only to fully wake up and realize everything was quiet.
Then the hallucinations became more ominous. I started seeing people who weren’t in the room when I slept on a couch (and thus wasn’t sleeping as deeply). I began to develop “tricks” to test whether I was asleep or awake, but they all fed me false information. During one hallucination, a friend touched my arm and said, “See, I’m really here.” During another, I was sure I passed my hand under the overhead light, and when it dimmed, I knew I “must” be awake.
Hallucinations weren’t my only new problem. I also started experiencing sleep paralysis, which occurs when your body doesn’t move through the normal stages of sleep. I would often open my eyes and try to move but be unable to do so. I would think I had gotten out of bed, only to fully wake up and find myself still prostrate. This would happen over and over again in a single day.
I was with a pharmacist friend when it finally dawned on me that I might have a sleep disorder. No doctor had ever suggested this, even though I realized I had all the classic symptoms.
My doctor at the clinic somewhat reluctantly agreed to give me a referral to the sleep medicine unit at the University of Washington Medical Center. When I finally got there, the doctor wasn’t surprised at all that it took me so long to get proper help.
“Doctors never think about sleep issues, but your symptoms fit the bill,” he explained.
Unlike my other doctors, he looked me straight in the eyes and treated me as an equal instead of a problem patient. It was such a different experience that I even wondered if the entire unit was a scam.
Soon I participated in a sleep study, and the results showed that I wake up gasping for breath 10 times an hour throughout the night. I had been so sleep-deprived that I had no knowledge of these disruptions, which is true for most people with the condition.
I received a CPAP machine, which continuously blows air into my nose as I sleep. After a few months, I was able to get a job. After a couple of years, I got an apartment, finished my thesis and graduated cum laude.
I still need more sleep than most, but I’m glad I’m no longer sleeping through life. My experience continually reminds me that it’s important to stand up for myself, even when I have to fight to be heard.