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September -
October 1999
Commentary
A letter to my physician
Dear
Doctor:
I started this letter almost three years after you diagnosed me with chronic fatigue and
immune dysfunction syndrome (CFIDS). At the time of the diagnosis you told me that you knew very little
about the illness. I have moved on to other doctors and healers, but I find my thoughts returning
to you these days.
Of course, you may have moved on in the intervening years yourself, learning
more about this illness through other patients' experiences. Still, I'd like to share with you some of
what I've learned.
After you called me at my office to tell me I had CFIDS, I was in a daze. You
said, "I can give you a prescription for 25 mg of Doxepin, which will help you sleep." That was it. I
was on my own. The Doxepin did help me get more sleep, but for days, I was crying and saying, "My life
as I've known it is over."
I felt profoundly betrayed by a medical profession that had told me
to place my trust in it, and then abandoned me. I could not believe there was nothing I could do except
take this little pill, but did not know what else to do. I was a highly educated, competent, successful,
professional woman, and I felt completely humbled by how much power I had given to medical professionals.
I
sought out an "expert" and found myself at a local medical center talking to an internist who was recommended
as someone with experience in treating CFIDS. So he began to treat me, but he only made me sicker. He
prescribed medications in doses that were far too high, and when I called him with stories of horrendous
side effects, insisted that those were not side effects of the drugs he had prescribed. When talking to
him I felt belittled, unheard and abused. He never tried to tell me that CFIDS wasn't real, but he never
admitted that treating it is different from treating the individual symptoms when they are not in the
context of CFIDS.
In desperation, I turned to the Internet for support and information. I downloaded
pamphlets from The CFIDS Association and the Centers for Disease Control and Prevention. On CompuServe
and America Online, I joined forums and message boards on which others, all over the world, were talking
about their experiences.
I found people who had tried the medications, had similar side effects
and were now taking doses that were a small fraction of the original. Even armed with this information,
I still felt that I was insulting him by doubting his knowledge. But I now had the confidence I needed
to say goodbye to him, and to search for a doctor who understood that we needed to be partners.
At
this point I had the pure good luck to go to a holistic doctor with a background in Western and
Eastern medicine. At our first meeting, she interviewed me about my experiences over the last year with
heat and cold; foods and fumes; sleep and action; likes and dislikes; work and leisure. As we talked I
began to understand how my experience fit into a pattern and that pattern had a name: CFIDS. I realized
that because I wasn't looking at my health holistically, I didn't present the entire range of symptoms
to any of my caregivers, making it more difficult for them to diagnose and treat me.
In that first
session I learned that there are things people with CFIDS can do to help ourselves feel better. As I look
back on these lessons now, they are common sense. At the time they felt like the illumination of new wisdom:
Stop doing or eating the things that make you feel bad. Regardless
of what conventional
wisdom or doctors say, if something feels bad, stop. I started changing my diet, eliminating foods like
dairy, sugar, fats, alcohol, caffeine and Nutrasweet. I learned to set limits for my activity, mental
as well as physical.
Make getting good, deep sleep a priority. That meant experimenting
with herbs that
helped me fall asleep; changing my schedule so that I didn't have to rouse myself too early in the morning;
creating a restful, comfortable sleeping environment; and turning off the ringer on the telephone at night.
Find a good counselor or therapist. I felt guilty that I was sick.
I thought that
I had brought it on myself and that if I had been a better person I would have been able to keep
it from happening. I was torn about work, and I was getting deeply depressed. I went to a
therapist I had seen in the past; she helped me maintain perspective as I struggled with life-defining
decisions.
Find ways to continue doing things that make you feel good. For example,
I enjoy talking
with friends on the telephone; when it became too exhausting, I bought a headset so that I don't have
to hold the phone. I enjoy going out in the evening so I developed "safe houses," or friends' homes where
I could stay overnight rather than driving home.
Build community. You alone cannot do it all. But family, friends, colleagues
and neighbors
may have a hard time understanding the implications of this illness. I had to explain my limits and ask
for their assistance and understanding. As I've learned to ask my community for help, they've been there
for me.
Surround yourself with healers. I realized no one person can respond
to the whole
range of my needs. I mix Chinese and Western medicine (I still take 1.5 mg of Doxepin daily for sleep,
for example). My group includes a therapist, acupuncturist and herbalist, family practice physician, tai
chi teacher and others.
Educate yourself and talk to others with CFIDS. There is a lot of information
available
about CFIDS and about recovery. The CFIDS Association and their publications are very helpful. I started
collecting names and phone numbers of recovered CFIDS patients and started calling people when I needed
some encouragement.
Allow yourself to get angry. CFIDS is a drag. A major drag. And sometimes
I'm really
angry that I'm not well and I can't do the things I want to do. Sitting on that anger doesn't help me;
sometimes I cry or yell or call up my friends.
Maintain your sense of humor. It can be hard, but it is essential
to sanity
and positive quality of life. Sometimes I have to laugh when I feed the dog three times because I forgot
that I already fed her; she looks at me with such concern!
Let go. And then, start to build. At some point I realized I was building
a new life,
not just letting go of the old. I was finding things that interested me now, not just dealing with not
being able to do things that used to interest me.
I understand not everyone has access to the same resources. There may not be funds to
pay for therapies
not covered by insurance. Still, there are things we can do for ourselves.
After all I've learned,
I hope you don't continue to tell patients who are newly diagnosed with CFIDS that there is nothing more
you can do for them. Now you can at least give them a copy of this letter.
Whether their CFIDS
lasts one or 12 years, those facing it cannot continue with "business as usual." You can help them improve
the quality of their lives as they struggle with this terrible illness.
Sincerely,
Hanna Fingeret
Hanna Fingeret lives in Raleigh, N.C. She wrote for the July/August Chronicle
on the benefits
of taijiquan.
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