Living With CFIDS
Learning to Let Go
A dozen ways to enjoy life without a
By Jennie Floyd
In the spring of 1998, when I married my husband at sunset on the oceanfront bluffs
of Carmel, Calif.,
everything in my life seemed golden. We had a beautiful waterfront home near San Francisco, an income
that classified us as wealthy--and I had the job of my dreams.
Then I got sick and everything changed. After struggling for more than two years to
keep working and
retain my sense of self-worth, I have learned that life with chronic fatigue and immune dysfunction syndrome
(CFIDS) means letting go of my career and embracing new dreams instead.
My illness actually began years before my marriage. I contracted walking pneumonia in
late 1991 and
never really recovered. My health worsened through two cross-country moves and three job changes over
the next five years.
Finally, after collapsing on a business trip in November of 1998, I visited a specialist
in San Francisco.
After listening to my litany of symptoms, the doctor began writing out a prescription for a medical leave,
citing severe exhaustion.
"We are going to find out what is wrong with you," she said soberly, "or you wonít live
to see your
A two-year trial
I tried to return to part-time work after six months, but
my symptoms re-appeared
within a week. My doctor insisted on another three-month leave. By then, my formal diagnosis was CFIDS
and fibromyalgia. I remained in denial about the seriousness of my illness, however, and, feeling better
again, accepted a new full-time job.
Once again, I relapsed within a month, but continued to work part-time for four more
months. Then I
started a new immune therapy which had me feeling so much better that I was convinced I was ready to return
to full-time work.
This was yet another mistake, but one that my body took care of for good this time.
I had been on my
new job for only one month when, while walking from my hotel to my office during a business trip, I twisted
my ankle and was thrown forward with such force that I later reflected that it felt like being pushed
by the hand of God.
Although I was able to fly home that night, within a week I couldnít walk, and the accident
all my CFIDS symptoms again. Nearly a year later, Iím able to walk again, but returning to work seemed
foolhardy given my three previous unsuccessful attempts.
Finally, reluctantly, at the insistence of my several doctors, I applied for Social
insurance in May of last year, and was awarded full benefits based on CFIDS on the first try. I have been
"retired" since September of last year; I am 42 years old.
Changing my priorities
After spending more than 20 years in a high-income,
career, one of the most difficult tasks I faced in dealing with my disability was learning to let go of
work. Since I have been unable to have children, much of my identity and sense of worth was tied up in
what I did for a living.
But after a period of denial, anger and grief, I reached a point, with the help of my
where I was able to take steps to cope with my ongoing struggle to let go of work. Here are a dozen strategies
that helped me the most:
- Buying a companion animal to keep me company during my days at home. Pasha is now
a darling two-year-old pug, and my husband helps me care for her.
- Developing a budget with my husband, one that allows us to continue to live a good
life on a greatly reduced income.
- Cleaning out my business files and clothes closet, although I kept my business suits,
just in case I am ever able to return to consulting work.
- Making a scrap book in honor of my career, including all my mementos and awards for
- Holding a "re-birthday" party when I turned 41 and planned to start part-time work.
The idea was that the part-time job was a sort of rebirth for me and my career. I asked friends to share
re-birthing experiences from their own lives in lieu of gifts, and it was quite moving. While the part-time
career hasnít worked out, the event was a great healing experience.
- Throwing a "retirement" party to celebrate my disability award, although, ironically,
we had to cancel this because I had an emergency appendectomy.
- Writing about my transition in journals, essays and poems, some of which Iíve published.
- Finding support in other areas, such as e-groups and local support groups to help
me feel less isolated.
- Taking short classes when I am able, in areas of interest such as creative arts,
as long as they are low-stress and non-graded. Iím doing Japanese flower arranging now.
- Developing friendships outside of my previous workplace environment, based on common
interests rather than employment. I meet many potential friends in classes and at the dog park.
- Finding a group of supportive doctors who were willing to support my disability claim
and are willing to work with me to try new treatments as they are developed. This has been essential to
my ongoing recovery.
And most importantly:
- Continuing to grieve my losses and work on my changing relationship
with my husband,
with the help of my excellent psychotherapist, whom I see on a monthly basis.
Dealing with my illness and letting go of work remain the most difficult challenges
of my life. My
self-esteem suffered greatly initially, but with the support of my husband, family, friends and my psychologist,
now I am confident that I have innate value as a person, far beyond how much money I earn or what I do
for a living. Though my life may not be as golden as it looked in the spring of 1998, at least now I can
see a silver lining beyond the clouds of my illness.
During her 21 years in telecommunications, Jennie Floyd was a manager with AT&T,
Networks and Telcordia Technologies. Most recently, she was a research director for Aberdeen Group. Today,
Floyd resides in the San Francisco Bay area with her husband and her pug, Pasha.