Learning to Live with Chronic Fatigue Syndrome
I woke up on a Thursday in early May, and couldn't get out of bed. In
fact, I couldn't move. My muscles ached and my throat burned. My sweat-soaked
body shook with chills. The kids were about to start their summer vacations
from school, work was busier than usual, and I had a long list of projects
ready to accomplish during the warmer weather. It wasn't flu season, but
it sure seemed I had a doozy of a bug.
I called in sick and settled myself on the couch with a good book and
the remote control. Two days off, some more rest on the weekend, and I'd
be back in business. But by Monday morning I still wasn't feeling right.
I had trouble breathing walking up the stairs and to the car. Waves of
heat poured over my body, leaving me dizzy and weak. I decided that getting
back in the swing of things might be good for me; surely this was just
the last of that pesky flu. Tackling pantyhose and getting two kids off
to school, I told myself not to overdo things this first day. I didn't.
But by 2:00 p.m., I was back in my car, pale and hot, driving home to
fall into bed.
Within months, I would count myself among the disabled.
Leaves fell, the temperature dropped, the snow melted away. Still, I
did not return to work. In fact, I went from five years of full-time employment
to "taking a couple of weeks off," to placement on Leave of Absence to
finally, termination--all within a three month span. Full-time job with
benefits, mutated into disability and uninsurability--just like that.
The culprit? At first, no one was sure. My doctor began by treating
me for an upper respiratory infection. We ruled out mononucleosis, thyroid
problems and lyme disease. We looked for "bugs" I'd never even heard of,
like cytomegalovirus. We even looked for cancer. After a barrage of blood
samples, x-rays, urine specimens, ultrasounds and more, my doctor gave
me some confusing news.
"I believe you're developing Chronic Fatigue Syndrome," she said.
Chronic Fatigue Syndrome. Okay, so I was really tired--who wasn't? In
fact, for the last month, I'd been bothered by extreme insomnia. It was
ironic--sleeping in the daytime, then eyes wide awake at night. Someone
suggested I just had my "days and nights mixed up." I needed a schedule,
I needed to get in shape, get more fresh air, but I couldn't get out of
With those thoughts, I began my struggle and search to learn all I could
about the debilitating illness that calmly and quietly slipped into my
life and changed the rules. It would be a long time before I planned a
weekend--or a day, for that matter. Chronic Fatigue Syndrome (CFS), also
known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), forced me
to live life one day at a time, one moment to the next.
In the United States alone, it is estimated that hundreds of thousands
of people are afflicted with CFS, though many may be misdiagnosed or not
diagnosed at all. The name "Chronic Fatigue Syndrome" is misleading at
best, damaging at worst. Sufferers are not simply tired all the time,
as the name would imply. The condition brings with it not only persistent,
debilitating fatigue, but also recurring mild fever, sore throat, painful
and swollen lymph nodes, unexplained generalized muscle weakness, muscle
and joint pain, severe or unrelenting headaches, confusion, inability
to concentrate, depression, forgetfulness, photosensitivity and sleep
disturbances like sustained insomnia, night sweats and chills. Calling
this illness Chronic Fatigue Syndrome is like calling stomach cancer "Chronic
My case was somewhat typical, though no two people with CFS have the
exact same experience. The symptoms came, one by one, sometimes two by
two or more. There was no pattern. In the beginning, each day was a mystery
unfolding--what would I feel like today? Well-meaning friends offered
to take me out to get some fresh air and sunshine. I just wanted to be
able to get up and go to the bathroom, or maybe make it up the stairs
without running out of breath. CFS took charge, threw me into bed for
the day, or allowed me to get up, only to experience waves of heat and
a screaming sore throat. Going to bed at night was an adventure in restlessness.
If I was able to fall asleep, I woke each hour, shaking and soaking wet
from head to toe, reeling from vivid high-action dreams, "crazy making
dreams," my support group would later call them. Friends brought me books--I
was too exhausted to read. My brain wasn't able to focus. I couldn't see
the words, the paragraphs melted together. I felt like I was living underwater.
After awhile, the onset of new symptoms seemed almost ridiculous--impossible
for one person to experience so many in a given week. I began to keep
things to myself, afraid people would think I was a hypochondriac, or
worse, a lazy bum. Time passed, and as I began to be able to get out of
bed, I worried that I wasn't really sick at all. Maybe I was crazy, or
lazy. As the weeks dragged on, I found that if I put some concealer over
the dark circles under my eyes and rested a lot, I was able to go out
and accomplish an errand or, two, on a good day. A trip to the Post Office
or bank became an accomplishment. I decided to make one trip out of the
house each day, to force my way back into life, back into the stream.
I'd walk slowly through the grocery store, leaning on the cart, or spend
some time at the library, looking for any information I could find on
Chronic Fatigue Syndrome. But always, with my throat sore, my muscles
aching and my determination beaten. Often disoriented, I finally had to
give it up and get home to rest. Eventually, I spent most days at home
as my symptoms waxed and waned in an unpredictable jumble.
My husband took over on the home front. He drove the kids to school,
cooked dinner, took care of laundry, did the grocery shopping. All the
tasks we had maneuvered around both of our busy schedules now had to be
crammed into one busy schedule, while my daily goal was to get showered
and dressed. We discussed what it would take to keep our household going
and delegated additional chores to our thirteen-year-old daughter and
seven-year-old son, explaining that we all had to pitch in a little more
to keep things running. I felt overwhelming guilt. It was bad enough to
be unable to work at my job, which had given me an identity, provided
wonderful friends and challenges, and rewarded me with a paycheck. Now
I couldn't even take care of my home, my children were confused and scared,
my husband was run ragged. I felt helpless--my life felt out of control.
After twelve long weeks, my employer was no longer obligated to hold
my position open for me and I received notification that I would be terminated.
I jokingly referred to it as the "T" word when talking to friends--secretly,
I feared what lay ahead in this new-found life of mine.
My benefit package had included disability pay, so I was okay financially
for the time being. However, the medical insurance I had carried for five
years with my employer was cancelled upon my termination. In fact, my
entire family had coverage under my plan, and their policy was cancelled
as well. No more employment, no more insurance. I checked into the COBRA
plan guaranteed by law to continue covering employees for eighteen months
after termination. I was told it would cost me over $700 each month for
the same family coverage through the COBRA plan. It was out of the question.
I searched for help, certain that I was simply uninformed, that I would
find affordable, comprehensive medical insurance for me and my family.
After all, I had always been a good employee, I had always paid my share
of our insurance premiums through payroll deduction. I was no slouch--I
worked hard and paid my bills. But nobody could help me.
First, my husband insured the entire family through his employer's HMO--the
premiums were higher than we were used to, but we needed the coverage.
We paid--but there was a catch: anything related to my illness would not
be covered. "Pre-existing condition" became a new phrase added to my vocabulary.
It didn't make sense. I had paid for medical insurance in case of an
illness. Then I became ill and lost my medical insurance with my job.
I didn't blame my employer, it was just the way the system worked. Now
my illness was a "pre-existing condition," preventing me from getting
sufficient medical insurance. What kind of system was this? It seemed
like a mixed up circle of impossibilities. I decided I just wasn't informed
I made phone calls, asked questions. Finally, I called on a friend I
had met through my job. He was well respected in the community, and had
worked in the insurance field for years. I knew he would do all he could
to help me--and he did. He referred us to an agent who could offer us
an affordable comprehensive policy for the entire family. Our problems
seemed solved. Because CFS is a chronic illness, the symptoms are long-term,
but usually require little hospitalization or emergency services. The
agent seemed relatively certain there would be no problems getting our
He was wrong. Our application came back approved for my husband and
children, but I was rejected. I called a several other agencies--with
no luck. Finally, a very compassionate insurance agent told me over the
phone that I had an "uninsurable" condition. In short, no one would insure
me--because I was sick. I could quit making phone calls.
A final possibility came from a friend at work. She was aware of a State
program for uninsurable people. I received information from the Colorado
Uninsurable Health Insurance Plan (CUHIP), and, out of desperation, signed
myself up. My premiums would cost more than twice the amount we would
pay for my husband and children combined. We made too much money to qualify
for Medicaid, but not enough to afford this. I took the chance anyway,
hoping we could make it work.
I was told I would have to go through a six-month waiting period for
all charges stemming from my pre-existing condition. In other words, in
addition to the high premiums, we would have to pay for prescriptions,
doctors' office visits and any other medical expenses related to my illness
for six months. After that, they would consider my charges and pay a percentage
of them. I realized a couple of weeks into it that we just didn't have
the money to maintain the expensive policy while paying for all of my
medical expenses ourselves. A month after I signed up, I called to find
out about temporarily cancelling my policy. The woman I spoke to told
me that if I cancelled, I wouldn't be eligible to apply for coverage again
for a year and a half. I gave up. I cancelled the only possibility of
health insurance I had. I simply could not afford it. I found it ironic
that my entire life I had been healthy, and I always had health insurance--now
I was sick, and no one would insure me. For the first time, I understood
how a person could "fall through the cracks" of our healthcare system.
I understood that health insurance was for the healthy, and those who
could afford it.
Over time, CFS symptoms realign themselves in a different fashion for
each individual, changing on a daily, weekly or monthly basis. In my case,
after a few months the sore throat diminished, muscle aches became more
intermittent, and my energy level improved somewhat. Instead, I found
myself dealing with short term memory losses and confusion. I lost my
way to the local library, I forgot entire sentences midstream in conversation.
I used the wrong words and drew a complete blank while talking. I forgot
what I was talking about, even forgot the names of people I'd known a
My mind betrayed me, so I became my own watch dog. I questioned what
I said as I was saying it, I repeated names and topics in my mind while
trying to listen to others. I became disoriented in department stores
and confused in conversations. People I knew well became uncomfortable
around me. Like a new kid in school, I felt out of place and unsafe.
Losing contact with friends upset me more than I had expected. Of course,
I never imagined the number of people who would simply disappear from
my life--people I had spoken with on a daily basis for five years, people
whom I had even met with occasionally outside of work.
In the beginning, I felt cared for and missed. Co-workers brought casseroles
to my home, donated paid time-off hours to help me with my declining income,
and called often to see how I was doing. I will be forever grateful for
all of the extra efforts and thoughtfulness of those who helped and maintained
contact in the beginning. The goal of many of those early days was to
write thank-you notes to every single person who remembered me.
But CFS is not a convenient illness. In fact, CFS affects lives in a
way that is particularly contrary to our society. Today, what a person
does tends to define who a person is. CFS patients are generally not able
to DO much of anything, especially in the early months of the illness.
Our business world is goal-oriented: we identify the problem, assess options
and begin taking steps to solve it, and then move on to the next. Project
Management. Accomplishment. Control. CFS changes all that--and makes people
afraid. As a person with CFS, I was afraid, wanting to regain control,
but unable to. People with CFS often describe the illness as a roller
coaster; terrible days when muscle and joint pain are extreme, memory
loss is continual and even breathing is difficult--good days when a shower
and a trip to the store seem a joy, a reason for celebration; the in-between
days when the struggle goes on inside, the patient determined to get out
of bed and DO something, even though it hurts. When friends saw the randomness
and lack of cause-and-effect logic the course of my life had taken, they
too, became afraid . Soon, phone calls diminished and encouragement dwindled.
Some rationalized that I had not kept in touch with them. I had more
time on my hands than they did--I was home all day. Couldn't I pick up
the phone? What they didn't understand was that I couldn't. They didn't
understand the debilitating fatigue that caused me to lie in bed for hours,
unable to pick up the glass of orange juice on my nightstand next to me.
They didn't understand that my brain didn't work the way it used to. They
didn't understand that I wasn't simply tired. I tried to explain the fatigue
to them as the "Anesthesia Wave," likening it to that moment right before
surgery when you realize you're about to lose consciousness. I thought
that might help them understand its severity, and my inability to "fight
it off." When I explained the additional symptoms, almost too many to
believe, some thought surely this was a mental health problem. Some thought
it a convenient excuse to escape the rat race we all complained about
over lunch in the past. Some told me I was lucky to get it and be able
to be at home, "not really sick, just enough to stay off work." Some told
me they wished that they could get something like CFS. Eventually, my
illness and I simply didn't fit into their busy schedules. My swift recovery
date had been predicted and changed--an erasure on the calendar one too
many times. My personal "roller coaster" had taken on a life of its own.
The phone calls dwindled and eventually almost stopped completely. I'm
thankful each day for the handful of friends who stayed in touch and remain
in my life.
I also fought the battle of my goal-oriented upbringing. What purpose
could I create for myself to justify my existence if I was unable to DO
anything? What good was I? Like many other "thirty-somethings," I had
questioned my life's purpose long before the illness struck. At least
I had choices then. I realized it would require a drastic change in my
thinking patterns to get the answers to these questions now. I worried
that I might never find them. I couldn't help but remember the committee
meetings at work where we had discussed the need for a "paradigm shift"
in order to survive in the changing world.
As strange as it may sound, my paradigm shift came when I quit fighting
my illness. About a year into my illness, I remember resting on the living
room sofa one afternoon as the sun filtered in through the sheer curtains
and hanging plants, splotches of sunlight dancing across the tapestry
rug. It was my favorite time of day in that room. As I noticed the warmth
of the sun and the shadows it cast, I realized for the first time that
I wasn't doing anything. I wasn't worrying about money. I wasn't questioning
the Meaning of Life. I wasn't foggily planning an herbal attack against
my latest symptoms. I certainly wasn't moving around. I wasn't sad or
happy or frustrated or angry. I just was.
With that realization, I then quickly reminded myself that I had a terrible
illness and that I wasn't doing anything about it. No stoic affirmations
churned in my head. No mustering up of energy. No medication review. And
I realized, surprisingly, that life went on. Without my fretting, figuring
and fighting, life went on. Life went on, and so did I--but suddenly without
the fear, without the anxiety, without the guilt. It was just life--not
a contest, not a race, not an accomplishment. It was just my life--and
CFS was a part of it. I realized the CFS and I were going to have to learn
to get along together.
That was about a year ago, and CFS is still a part of my life. But so
are many other wonderful (and not so wonderful) experiences. I'm no longer
wearing pantyhose, except on the most special of occasions. I can't work
at a job because it would take me three hours to get ready to go (and
then I'd probably get lost on the way there) . I still have what I call
"days from hell," but I also think I've learned to notice a little bit
of heaven right here on earth. I can hear the birds now, singing on a
Spring morning, and I notice grass growing up through the cracks in the
cement. My plants get watered now, and misted. I so enjoy the way they
respond to care as opposed to the neglect and frustration they got from
a hurried and frazzled working mom. I appreciate being able to pick up
my glass of orange juice. I relish being able to read again, even if only
for a few weeks at a time. A call or visit from a friend is such a treat--I
notice them now, the nuances in their speech, the laugh lines around their
eyes. Of course, in between are days of pain, disorientation and fatigue.
But each day is new, each moment is unique. I live each moment as it comes,
and realize that I never really had control anyway. I no longer cram my
desk calendar with lists of "urgent" tasks. I take life one day at a time.
In fact, I think tomorrow, I'll wake up.
© Nadine Goranson, 1996
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