A first-person account of surviving chronic fatigue syndrome
Chronic fatigue syndrome is a lousy name for an even lousier disease. Decent grammar-checking software will flag both "chronic" and "syndrome" as hackneyed jargon, and suggest changes. As for "fatigue," well, everybody gets tired, right?
What is it like to spend nearly your entire adult life disabled by an invisible illness, one whose name engenders more disbelief and derision than compassion or fear? How do you keep your sense of self -- not to mention humor -- during a 16-year battle with a mean-spirited microbe?
I got sick 10 days before my 26th birthday. At first it just seemed like an explainable bout of exhaustion. I'd recently wrapped up two stressful years of teaching at an East Coast boarding school. Under a crushing workload, I'd averaged five hours of sleep a night. No wonder I was worn out.
But I couldn't seem to catch up on my rest when I returned to Honolulu, my home-town. I developed a fever and a sore throat. I felt achy and had difficulty concentrating. The flu in June? No time for that; in a few weeks the summer session would be starting at Punahou, where I was in charge of the European History program.
I met the other teachers for lunch a few days before orientation. In my sleeveless cotton dress at the over-air-conditioned restaurant, I couldn't stop sweating. I also couldn't think straight or articulate my thoughts. There was so much to do. I just wanted to sleep.
My new job that fall in Los Angeles suited me perfectly: a tony day school where I could concentrate on teaching and still have a few hours a week left to have a life. I found a quiet studio apartment on the grounds of an idyllic Hollywood Hills estate, complete with large pool and lighted tennis court. A close friend from college who lived five minutes away frequently dropped by to subject me to his wicked forehand, or take me to the movies.
I dragged myself through almost an entire school year. Symptoms mounted, but at the time I didn't connect them as parts of a larger whole. Tired? Get more sleep. Muscles and joints stiff? Get more exercise. Headaches? Just stress. Walking into walls and dropping things? Clumsiness. Individually, each problem could be rationalized.
But the fatigue, which had ebbed and flowed in unpredictable tides since the summer, started to swamp every aspect of my life. There were near-narcoleptic episodes -- falling asleep while putting on makeup, mascara wand squashed between hand and cheek; and several close calls while driving home from work. More than once, I had to pull over at a market, stumble through the aisle for some grapes -- thinking maybe my blood sugar was low -- and doze in the parking lot before finishing the drive home.
By spring, I was practically on an IV drip of Diet Coke, downing three or four cans before my first class. Some days, even that much caffeine wouldn't conjure coherence, so I gave the students quiet time to do homework while I quaffed more Coke and pretended to work. I skipped afterschool commitments, so I could get home and into bed as soon as possible. I stopped eating dinner because I was too tired to shop, let alone cook.
My thinking was so muddled that I couldn't see how sick I'd become. One day in May 1990, a concerned student noticed that I was pale, perspiring and confused. She pulled me aside. "Miss Crean, maybe you have mono." She took me to a phone and helped me call a doctor. That was the last day I would be employed in a full-time job.
Luckily, the doctor who had seen me a few times that year -- and who had treated me essentially as a stressed-out, hysterical female -- was out of town. The insurance company sent me that afternoon to another doctor, who immediately knew something was seriously wrong. He ordered a battery of tests and told me not to return to work until we had some answers.
As I waited for the results, my mother read to me over the phone an article that had just appeared in Time magazine. It described exactly how I had been feeling for 11 months, listing the physical, neurological and cognitive symptoms that had taken over my life. I'd never heard of chronic fatigue syndrome before.
The name of the illness itself has been a source of endless grief and controversy. In the United States, CFS is also called "chronic fatigue immune dysfunction syndrome" (CFIDS), because the immune system behaves abnormally --usually it is overactive, which may be a key source of the fatigue. (When you have the flu, it's not the virus that tires you but your body's immune response to it.) In England and Australia, CFS is called "myalgic encephalomyelitis," which emphasizes the muscle pain and neurological disturbances.
In the early 1990s, the difficulty of being disabled by an illness no one could see was compounded by the media's destructive label for CFS: "yuppie flu." The nickname suggested the condition was a trendy excuse for burned-out professionals to quit their high-powered jobs. It reinforced the "it's-all-in-your-head" diagnosis that many patients were hearing from doctors, and diverted scarce medical resources to disproving theories of psychological causes.
In 1999, the first large-scale prevalence study turned the "yuppie" myth on its head. Researchers at DePaul University found that whites and professionals had the lowest incidence of CFS. The highest rate by far was among Latinos, followed by blacks; skilled blue-collar workers and unskilled workers both outpaced those with white-collar jobs. Women proved three times as likely to get CFS than men, a rate similar to other systemic illnesses with neurologic and auto-immune components. The study showed there were at least 800,000 people with CFS in the United States.
The most shocking finding: 90 percent of all patients were not properly diagnosed or receiving treatment. There is no test for CFS; the biological agent that triggers it has yet to be identified. Diagnosis is a process of excluding other illnesses that can cause similar extreme debilitation and pain, such as cancer, lupus, Lyme disease and multiple sclerosis.
The American health-care system does not reward this kind of primary-care detective work, let alone the creative long-term management of a chronic illness. And as my experience shows, even someone who is health-conscious and well-educated and has access to medical care can explain away the diffuse and confusing symptoms for far too long.
At age 42, it feels strange to say my life's main accomplishment has been: "I survived." It's hard to recount the journey without sounding self-pitying or self-serving. Survival took liberal applications of some personal qualities that in other circumstances might be counted as flaws: willfulness, stubbornness and defiance of authority.
I inherited my mulishness from my mom -- and without her I might have died. I moved home to Hawaii so she could care for me, and spent years existing at about 3 percent of my pre-illness energy level. That allowed me to get myself to the bathroom. To feed myself, with someone else preparing the food. To brush my teeth, most days, sitting on a stool. And to shower, if someone else was home in case I fell.
The list of what I couldn't do encompassed just about everything else. Reading and watching TV were too cognitively demanding. The briefest phone conversations exhausted me. Even wearing clothes became difficult. My muscles and joints were in so much pain that any contact with my skin was agony. I couldn't wear a watch for years.
A cruel hallmark of CFS is nonrefreshing sleep. In my case, CFS threw in a host of other disorders: insomnia, early waking, night sweats. Drugs only worsen long-term sleep problems, so I made an intensive commitment to extreme "sleep hygiene." We purged the bedroom of everything but the bed and the fur-bearing mammals, creating an oasis for practicing relaxation techniques to calm my misfiring neurons and soothe my pain-racked body.
Improving the quality of my sleep took years, but it was the first major health obstacle I was able to overcome. Restorative sleep cleared much of the brain fog, and the worst of the cognitive and neurological symptoms slowly resolved. My energy level gradually increased. Gingerly, I began to use gentle exercise to moderate the muscle and joint pain.
The toughest obstacles, however, weren't medical. In part because the severity of an "invisible disability" was difficult to quantify, the biggest struggle was getting help -- from doctors, insurance companies, Social Security, even family. Insurers refused to pay benefits. Social Security required reams of documentation, then left my disability claim unprocessed for three years. My father and brother largely removed themselves from my life.
I realized only in retrospect that a fundamental shift had occurred in the way in which society viewed me. Institutions and even some individuals saw disability as an opportunity to ignore or devalue a fellow human being. Some of this behavior was unconscious, caused by ignorance or thoughtlessness. But some of it is deliberate exploitation: the long-term disability insurer with coordinated pressure tactics designed to purge a disabled policyholder; the modern-day snake-oil salesmen masquerading at support groups as "recovered" patients in order to hawk their products.
CFS can be a little nuclear plant of pain. But the rougher lesson was that people have an even greater power to make others suffer.
I'm doing much better now, but it's been a long road. I'm back to about 30 to 35 percent of my normal energy level, and live independently. I still knock things over all the time, and have to chop veggies slowly so I don't end up with a fingertip in the stir fry. Modestly vigorous exercise -- walking, swimming, biking -- helps me manage the muscle and joint pain. Daily stretching is a must if I don't want to freeze up like the Tin Man after a rain storm.
I'm frustrated, though, because now that I'm getting better, I want more. A recent series of foot injuries has crystallized my intolerance to setbacks. Ironically, my cast and crutches elicited more sympathy and understanding than I received during a decade and a half of living with CFS.
It's also ironic that now that I'm out in the world, I feel more alone than ever. In my thirties I missed the landmarks -- partnering, procreating, being productive -- that usually come along the road. Being among people who have those relationships and accomplishments accentuates just how solitary my journey has been. I've been locked on the CFS train by myself, slowly chugging away from the rest of society. Sometimes it feels like I'm pressing my nose to the window glass, watching other people living their lives on the other side.
After all these years, I realize my face is barely recognizable to the few people who remember the more impish, carefree Lisa: the go-to girl for an impromptu skinny dip; the tennis player who made up for a lousy serve by charging the net with fearless abandon. As I lumber back, I need to find new ways to cultivate that inner wildness, to test the boundaries my health still imposes. Any friends I make will want more than a teetotaling Rip Van Winkle. On the other hand, the new version of me is in some ways better: I am far more compassionate, my priorities are firmly centered, my values more deeply rooted.
I came to Vermont seven years ago, not knowing a soul and having previously spent only one afternoon in Burlington. Coming here was about moving on from the scene of the illness' darkest hours, and challenging myself to adapt to a new environment. The former island girl has ended up on a Champlain island, where six months a year the beaches are covered in snow and the "surf" is glassy. But for a month or so the lake temperatures are tolerable even to a Hawaiian. Now I just need to stick my toe back in the water.