SYSTEMIC LUPUS ERYTHMETOSUS:
DANCING WITH THE WOLF, PART II
by Kathie Turner, LMFT
Stages of Accepting Chronic Illness:
First: too sick to care
Just as with any loss, I have gone through stages since I became ill.
Initially I was so ill I didn't seek help. I slept up to 20 hours a
day and was too debilitated by exhausted to take action.
Once I improved enough, I tried to work, while aggressively seeking
help and a diagnosis. I was researching possibilities and seeking physicians
who came highly recommended.
Third: diagnosis relief (or
"There IS a name for how I feel!")
Once I was diagnosed I felt a tremendous sense of relief. I had a bonifide
illness called SLE that caused my fatigue and pain. But my initial acceptance
came much sooner than that of my support system and family. Although
it has taken time, my family is accepting, caring and supportive. A
luxury not all lupus patients can claim.
Later I railed angry against the illness, angry and disheartened at
the losses of autonomy, energy and activities that I enjoyed. I was
getting some relief from the prednisone, only to be told I needed to
reduce the dose, which in turn increases symptoms. The weight gain has
been dramatic. I can no longer work a job with structured hours. Those
with lupus frequently say they don't know from day to day, sometimes
hour to hour, how they will feel or what they will be capable of doing.
I find this to be true.
Fifth: learning coping skills
But then I discovered online mailing lists and support groups for those
with Lupus. I realized that as I participated in these groups that other's
shared my experience, and many were more severely effected and still
maintained a positive attitude. This helped me gain a perspective of
gratitude for the health I do have. Many list members cope with humor,
and hobbies, and I learned to do the same.
Knowledge is empowering
Learning more about Lupus empowered me to deal with it, and getting and
giving support seemed to dissolve any feelings of being a victim of the
illness. About that time the 6-8 months had passed that I had been told it
would take for the plaquenil (an antimalarial that helps some lupus patients) to
have any noticeable effect on my pain and fatigue levels. By May of this
year I began to experience some relief. I was approved for SSDI within 6 weeks,
which is quite remarkable since the average time is over a year for
disability approval. I began to formulate ideas about a home business. Having done
all the administrative work for my own practice, I could do the same for
other Health Care Practitioners. Hence the "birth" of Health Care Provider
It is now not quite 4 months later. I have a home business that is
taking off. My attitude toward my illness and my symptoms have shifted
dramatically. I can now laugh at the parts of lupus that can be laughable.
putting the cracker box in the freezer and the ice cube tray in the
my "brain fog" days. I jokingly refer to myself as the Pillsbury
doughgirl because of the "puffiness" and round face. I do little things to
myself. I take bubble baths and give myself manicures and pedicures
with bright colors.
I have the opportunity to rest when I need to, and the excitement about
projects in my business. I can sleep when I need to; another luxury.
But most importantly, I have learned to value my life and my health. When I
have a good day I am so grateful for the energy. I live in Southern
where I have always wanted to live.
Yes, lupus has changed my life. I had previously seen the "glass as
half empty" most of the time. But now I work to recognize it is half full.
Lupus has forced me to learn this. And focusing on what I CAN do rather than
what I CAN'T do has saved my life.
The Lupus Book: A guide for patients and their families
Dr. Daniel Wallace Chief, Rheumatology, Cedar Sinai Medical Center
Los Angeles, CA
Kathie Turner, MA, LMFT was a psychotherapist
working in both youth service agencies and in Private Practice until March 1995.
Since being diagnosed with Lupus and Fibromyalgia, she has participated in support
groups through online mailing lists and conducted her own research on SLE and
FMS. Currently she is the owner of Health Care Provider Services, a home
business providing administrative and marketing support services to health care
professionals; primarily psychotherapists.