Living with CFIDS
By Faith Wong
Grandma, my father's mother,
was always tired. Every morning,
she would get up, fix breakfast for herself and my grandfather, eat with him, then sit down to rest in
her wooden rocking chair for a few hours. When it was time for the next meal, she would pull herself out
of the chair, cook, eat and then sit down to rest again. That was pretty much Grandma's day. She sat for
most of the last four decades of her life and died in 1980, when she was 83.
The early part of
Grandma's life had been quite different. Her family provided some nice opportunities for her, including
sending her to a private school in Canada. Letters from school friends, which she carefully preserved,
attest to her popularity and active social life. She returned to Missouri and taught school for five years,
then met and married a handsome soldier, my grandfather. They began farming and raised two beautiful children,
my father and his sister.
Grandma gardened and canned and did all the things that farmers' wives
did. She served as president of the local women's extension club and kept impeccable records. She did
the bookkeeping for the farming operation and helped host elaborate dinners for threshers in the community
every year. She was a gifted seamstress and needlework artist and a genius with flowers and houseplants.
She was generous and hospitable. People liked Grandma.
According to my mother, things began to
change when Grandma was about 42. "She just folded up," my mother said, "and took to her rocker." But
she was still interested in the outside world. While Grandma sat, she spent hours pouring over her beloved
catalogs. She got them all---Sears, Wards, Spiegel---and enjoyed scrutinizing the latest fashions. She
also read widely---farm journals, Grit Magazine, Capper's Weekly and the Bible. The radio was turned on
several times a day for the latest news and market reports.
Grandma also took great interest in
all eight grandchildren, although she could not travel to see us. In the 1950s when we lived only a couple
of miles from her house, I can only remember her visiting us twice. She didn't attend any of our high
school graduations, although occasionally she made it to a funeral or wedding. Mostly she just stayed
at home, since even walking to her mailbox seemed an effort. As time passed, she became even more housebound.
family and the rest of our small community had many theories about my grandmother's lethargy. Some thought
she was depressed. Others thought that it was due to the fact she was somewhat overweight. Some thought
she had simply become lazy. Grandma herself wondered if she might have pernicious anemia, but her doctors
never found evidence of any known medical condition, and could not explain her persistent fatigue
and lack of energy.
Now, 20 years after her death, I have my own take on her lethargy. For the
past 15 years, beginning when I was 38, I have been suffering from chronic fatigue and immune dysfunction
syndrome (CFIDS). Before I became ill, I was a special education teacher, community volunteer, wife and
mother of two very active children, a real "soccer mom." I loved to garden, can vegetables, read, sew
and travel-the very things my grandmother enjoyed before she became ill. Now I find myself getting a meal
ready for the family, eating and then resting for several hours so I can have enough energy to prepare
the next meal. I sit or lie down a great deal of the time because I feel limp. My house, like Grandma's,
is cluttered and never truly clean. I don't go out much or socialize often because it takes too much energy.
In the mid-80's, my sister researched my problem and decided it was CFIDS. Just a few months ago,
I received an official diagnosis from my new primary care physician, who is a CFIDS specialist. It took
me 15 years to get that diagnosis. As I think about Grandma's frighteningly similar symptoms, I think
we have solved two, not one family mystery. I am convinced that Grandma also had CFIDS.
she was isolated geographically, on a farm miles from the nearest town, and emotionally, with an illness
no one understood, Grandma must have felt very alone. But she never showed it. Despite the fact that even
less was known about this illness back then, Grandma faced her health challenges with dignity and grace.
She was pleasant and kind, loving and fun loving. She knew something was wrong with her body, something
that couldn't be classified, but she carried on anyway. She just endured and never burdened others with
Grandma was not as lucky as I am. She faced her disabling and life-transforming difficulties
without anyone who could truly relate. Grandma did not have a support group, as I do, with people who
understand CFIDS as a physiological illness that affects millions worldwide. The CFIDS Association of
America has been my lifeline, keeping me abreast of the latest research findings, offering connection
and hope, raising awareness about the illness, working to change Social Security policies and lobbying
for increased research and education funding. I eagerly anticipate the arrival of each Chronicle
and check the Association's web site almost daily for updates.
I salute my grandmother for her
tremendous courage and strength, and am thankful that my experience has been different. Reflecting on
Grandma's long-term, quietly endured disability has inspired me to create a medical family tree to share
with my relatives and to be passed on to future generations, in case this devastating illness ever surfaces
again in our family.
Faith Wong lives in
Ogden, Utah and has been a family
history enthusiast for more than three decades.