A patient I'll call Bob Roan recently brought me a magazine clipping. "When the arthritis in Dolores Walker's ankle acts up," the article began, "there's only one way to get rid of the pain. She puts on her white sequined jumpsuit, slicks her hair back, and starts swiveling and snapping to the songs of Elvis Presley." The article went on to tell how the 43-year-old grandmother's Elvis act had enabled her to throw away her brace and cane.
I'm sure you're familiar with stories like this. They appear frequently in the lay press. The theme seems to be "mind over matter": If you pretend not be sick, you'll feel well.
My patient, Bob, has severe rheumatoid arthritis. He'll probably need a knee replacement soon. Despite his constant pain, he continues to do manual labor. He's kept his sense of humor. And he has nothing but contempt for the attitude epitomized in that article.
I share his contempt. I wish more people--especially physicians and nurses--did. Too often, the families of suffering patients tell them to "smile, you'll feel better." Or "snap out of it." Well, in a rheumatology practice, I see a lot of pain. My patients and I are tired of reading that illness can be pretended or laughed away. It belittles their genuine suffering. It hurts these people to walk. It hurts to get out of bed. It hurts to clean themselves when they go to the bathroom. They are weak, stiff, tired, and in pain.
Emily Sutton (I'm not using real names) comes to mind. Like Bob, she has severe rheumatoid arthritis. Her right knee was fused several years ago. She has a total prosthesis of the left knee; it broke and had to be repaired. She has chronic osteomyelitis of the right forearm secondary to failure of a total elbow prosthesis. She's had numerous operations on her hands and wrists.
When Emily sits, her right leg juts straight out, since the knee doesn't bend. Imagine the difficulty she has in using the toilet. Her right arm is almost useless. Imagine how hard it is for her to dress or brush her teeth.
Nonetheless, Emily doesn't complain a lot. She puts on a bright face and does her best to accept her fate. That includes enduring the well-intended advice of friends and relatives who tell her to smile and laugh and ignore her disabilities and pain. Emily is actually doing better than 99 percent of us would do under similar circumstances. These inane admonitions do her no favor.
Most of my patients don't use their illness for secondary gain, manipulating their families in order to get something. They simply want to be able to do what they used to be able to do. Homemakers want to be able to do housework. Those who work outside the home want to be able to keep on with it. They want to be able to drive, cut the grass, repair the car. When they can't, it's depressing.
Sally Austin is depressed. You might be, too, if you had Sally's systemic lupus erythematosus, coronary heart disease, and chronic pancreatitis. Because she has difficulty sleeping, she's always tired. She also lives with anxiety, perhaps because so much is expected of her.
Sally's family expects her to continue doing the laundry, washing the dishes, cooking the meals, and cleaning the house. She gets no sympathy or help from relatives, let alone from friends. She can't always manage to do everything, but she does what she can. In my opinion, it's more than her relatives would do in her situation. Telling her to "grin and bear it," as they do, not only is useless, it's cruel.
I tell patients in chronic pain not to look for sympathy. I warn them that complaints will quickly turn off spouses, siblings, parents, and children, not to mention friends and neighbors. I encourage them to suffer in relative silence, because complaining will only worsen the estrangement between them and their healthy families.
More than sympathy, these patients want understanding. Unfortunately, that's a scarce commodity, too. It's impossible to really understand severe, chronic, constant pain and disability without experiencing them firsthand.
I often talk with family members, trying to persuade them that their relative really is disabled and in considerable pain. This helps. Still, suffering is a lonely occupation.
It need not be a preoccupation, however. Certainly it's appropriate to urge patients to look on the bright side and to keep from fixating on their problems. But laughter doesn't stimulate T cells. Chuckling doesn't make cartilage grow back.
It takes a lot of courage to keep pain in perspective and get on with life. Joe Fielder, a young man with ankylosing spondylitis, had both hips replaced. Despite his obvious pain and stiffness, he continued working in a factory 60 hours a week. He had another problem, too-alcoholism, which I believe was related partly to his inability to live up to his family's unrealistic expectations that he laugh off his illness and conduct life as if he were normal.
Joe recently had to give up his job and is now living on disability. Around the same time, he quit drinking alcohol.
What patients like these need from their families, friends, and physicians is reassurance that their illnesses aren't their fault. They need to be reminded that even though they can't do everything they once could, they're still human beings worthy of our respect. Pain is an inescapable part of their lives. Let's stop their families from telling them to laugh it away.