In Being Sick Well: Joyful Living Despite Chronic Illness I have distilled these methods into twenty strategies, which are illustrated with case histories throughout the book.
The following is only a sampling of the twenty strategies. However, they provide a glimpse of what the people I interviewed taught me about being sick well.
Sue Sowle of Evanston Illinois, was overwhelmed with stress after her son, Zachary, was born with multiple birth defects.
Her family surrounded and sustained her for the next five years. Cultivating a personal network of family and friends is vital to remaining upbeat despite medical adversity.
Strategy number one for being sick well is cultivate your social network. Research shows that your social network is more powerful than stress, in determining how you deal with adversity.
Mary from Cheshire Connecticut, will not talk about her pain.
Notice the deformity of her hands from arthritis in the photo. Rather than dwell on the pain she wants to focus all her energies on the exciting things
in life, such as enjoying a party, hearing about her children and grandchildren. Mary’s ability to direct attention to other aspects of her life illustrates an essential strategy:
don’t dwell on your illness. Mary was extremely convincing as a person who was not suffering.
It was a shock to learn that she died shortly after our last interview.
Bette Furn is a Ph.D. psychologist who practices in Woodbury Connecticut,
She writes hilarious emails to her closest friends about her experiences with breast cancer treatment over the course of four years.
Because sickness is so grim, others often treat sick people grimly. Bette uses humor to turn a grim into a grimace and then to real glee.
Through her humor she remains connected to her friends and life.
Donna Jablonicky of Spring Hill
Florida, has lost her entire colon due to ulcerative colitis, and is in a wheelchair because of fragile bones.
She finds that spirituality buoys her up and gets her through the hard times. Using spiritual resources is a strategy that replaces diminishing physical
resources and cultivates a strong renewable spiritual reserve.
Tom Powers of Hankins New York, survived heart disease,
malabsorption, and multiple surgeries by saying the Jesus prayer. A prayer he learned from the Eastern Orthodox
Church. It goes like this, “Jesus Christ have mercy on me,” and it is repeated over and over again as a stress
management technique that induces relaxation without medicines.
Chris Goffredo of Stoughton Massachusetts, has a mysterious disease caused
by environmental pollution by trichloroethane and vinyl chloride, as in the movie A Civil Action with John Travolta.
Chris has multiple allergies, fragile bones that often break, and has been on crutches or in a wheelchair for years.
Although he is discouraged about his own illness, he is optimistic about other people, because he has helped form the
Stoughton Citizens’ Association that actively monitors and fights pollution. Chris has become an environmental
crusader, using his disability to change the world.
Dr. Andy Greenhill of Pittsburgh Pennsylvania, has been my friend since medical school.
He works as an allergist. Although he doesn’t look sick, he has lived for decades with two deadly diseases:
ulcerative colitis and coronary artery disease. He has taken charge of his diseases, actively doing whatever is
necessary to avoid flare-ups, such as taking medicine, running seven miles a day and watching his diet. Take charge
is a critical strategy for being sick well. It’s like Walt Larimore, host of the Ask Your Family Doctor series says,
your doctor is your healthcare coach, but you yourself need to become the quarterback making the moment-by-moment
decisions about management of your illness.
Gary Povirk of Schenectady New York, suffers from fibromyalgia. He was resigned to
living with chronic pain and discomfort without hope of improving his life. Then he turned to the Internet looking
for ideas on how other people dealt with fibromyalgia. He found advice to routinize his life (always awaken and
eat at the same time every day), decrease stress and increase exercise. He reduced stress by changing jobs and
improving his relationship with Lisa Christenson, his wife. He tried exercise but had setbacks such as tendonitis.
Taking a hot bath and stretching allowed him to slowly increase the amount of exercise. Gary took charge of his
illness. He modified the burden imposed by his illness, so that he is now upbeat instead of being beaten down.
Richard Geiger is a software engineer in Silicon Valley California. He suffers from
relapsing depression, but finds that antidepressant medicine helps. Research indicates that less than half the
medicines that physicians prescribe are actually consumed. This includes pills for blood pressure, cancer, heart
disease and all sorts of illnesses. When prescribed medicines are not taken, the result is the risk of a flare-up
or relapse of your chronic illness. Those people who keep the beast under control by taking the medicine as
prescribed are happier, which is one of the essential strategies for people living with long-term diagnosis.
Not only are people happier when they are compliant with their medicine, they are also hospitalized less than
those who are not compliant.
Placido Mastroianni
of New Haven Connecticut, has been my barber for thirty years. He has hardening of the arteries, resulting in a stroke,
coronary artery disease, death of a segment of bowel, and other problems such as cancer. For as long as I’ve known
Placido he’s been exuberant about life. He says he’s known people who had medical problems but the doctors made
those problems go away. Expect a cure, as Placido does. He hopes that a cure for all his illnesses will be
discovered by medical research during his lifetime, and this hope keeps him upbeat. After his stroke Placido
recovered his ability to cut hair, but his bocce score was low, which really bothered him, since he continued to
play bocce three times a week. Eventually he learned how to bowl the bocce ball slowly, so he could control it,
resulting in a return of his bocce score to its pre-stroke high
Beth and Don Brown celebrated 37 years of marriage in December of 2005. They live in Evans Colorado. Seven years ago Don had some prostate surgery that was supposed to be routine, but afterward he had a stroke that left him disabled, no longer able to work as a college professor, not even able to pay for gas at a pump using a credit card. Beth was devastated with sorrow, and retired
from her teaching career to take care of Don. Over the years she has accepted their situation, figuring that she
is doing what God wants her to do, namely to take care of Don. Take pride in your work as a caregiver is how one
would describe Beth’s feeling of dignity as a caregiver. Her attitude is one of self-respect while humbly doing
the work God assigned her. Her satisfaction with life improved when she began working outside the home ten hours
a week, several years after Don’s stroke. It is easy to think about the needs of sick people and forget the needs
of the unpaid caregivers, who are family and friends, usually women.
Charlene Stephens of Woodbury Connecticut,
has a child named Carla who developed uncontrollable seizures during the first year of life, resulting in severe
brain damage and profound mental retardation. Carla is in a wheelchair and has no language. For sixteen years
Charlene rarely left Carla’s side, except for a few hours on weekdays when Carla goes to a program for retarded
children. Charlene had to retire from her career as a teacher to take care of Carla. This isn’t what she would have
chosen for her life journey. But Charlene discovered that life still has blessings. Carla is loving and easy to be
around. Charlene and her husband Bill have turned a hobby into a cottage industry. Through their website (www.vintagevignettes.com), they buy, repair and sell antique dolls.
Enjoy the blessings is something that Charlene has learned during her sixteen year journey with Carla. Charlene’s satisfaction with life has also
improved when she began working part time outside the home, like Beth Brown.
Sherri Connell
of Parker Colorado, has invisible disabilities from multiple sclerosis, Lyme disease, and many other chronic illnesses.
She gave up a promising career as a model and actress, because she was so depleted. Her husband Wayne encouraged
Sherri to share portions of her journal on the Internet. Together they created a website,
www.InvisibleDisabilities.org which tens of thousands of people visit every month. Sherri’s writings have been
helpful to many others. Friends have rejected Sherri because she doesn’t look sick, having invisible disabilities,
and so people tell her to buck up and start enjoying life again, which is destructive advice because it denies
the realities that Sherri is living with daily. Using your suffering to help others is a coping strategy for being
sick well. Sherri found that many Christians reject her because they believe that if she prayed for healing and
remains sick, that must mean that God is angry at her. To address this tricky faith issue, Sherri and Wayne created
a second website, www.WhereIsGod.net. Once again Sherri is using her experience to help others.
Father John Cockayne
of Thomaston Connecticut, has had cerebral palsy since birth, and has diabetes and repeated infections. As a Catholic priest
he finds that his experiences equip him to use his suffering to help others, such as ministering to the sick in his
congregation. “Consider the Stations of the Cross,” he says. “We don’t know for sure that Christ fell three times
on his way to Calvary, but the Stations of the Cross portray him falling three times. Each time it was more
difficult for him to get back on his feet, but he got up three times. This means that it is alright to fall, to
succumb to anguish and pain. Repeatedly we need to struggle to our feet again, to continue our journey. If we try
our best to struggle and cope, God will honor our efforts.”