Growing up in Springfield, the capital of Illinois, it was summer’s annual rite of passage—days spent at the state fair. Each visit began and ended at “Happy Hollow,” the valley of endless rides, games, and sideshows. The less daring among us always headed straight for the House of Mirrors. There, we took delight in trying to negotiate the endless maze. At every turn, distorted body images, reflected in seemingly miles of mirrors, sent us into girlish fits of side-aching giggles.
In the world of kidney disease and dialysis, however, distorted perceptions are no laughing matter.
From 1980 until 2004, I was care partner to my husband Jerry as he very successfully negotiated that maze of kidney disease and traditional home hemodialysis (five hours, three days per week). An upbeat, hardworking and healthy-looking family man, he was an ideal “poster boy” for dialysis.
Initially, though, friends and family saw things a bit differently. About a year after Jerry began dialysis, we ran into a relative on one of our visits back to Springfield. Obviously flustered, she stammered, “You, uh, uh… you’re… here!” Laughing, Jerry patted his body and, purposely misinterpreting what was said, replied, “Well, gosh, you’re right! I guess I’m not still in Iowa.”
The misconceptions about dialysis can be repetitive, frustrating, and nowhere near reality. So what can we, as patients or family members, do to counter these distorted images? Think Education, Attitude, Communication, Humor! “EACH” of us can reflect an image that will help portray dialysis in a more positive light.
Education
Many of the mistaken ideas surrounding kidney disease are the result of false information or no information. Education is the key! If your unit allows, invite a family member or friend to accompany you to dialysis. If you are on home dialysis, turn treatment night into family time or party night. Jerry and I did, often inviting friends to stop by for pizza and a movie.
Volunteer to speak to a local high school health or science class or at a community college. Nursing and allied health programs would love to have a “real live patient” tell them about the experience of being on dialysis or receiving a transplant. Additionally, keep your legislators at the national and state levels abreast of your concerns.
Attitude
We may not be able to control every aspect of kidney disease, but we can control our attitude. The “Oh, woe is me!” stance evokes a pity we don’t want rather than the understanding we crave. The way other people see a patient or spouse is a direct reflection of how we see ourselves.
Jerry and I heard endlessly, “How do you do it… with work, family and all?” Or, “You both seem so happy!” But Jerry’s positive attitude was no public façade; rather, it was an outward expression of the way he really felt. ”Everyone has problems,” he would tell them. “Kidney disease is mine, but it’s not all of me, not by a long shot!” Then he would look at me and tease, “I’m taking you along for the ride!”
Communication
Talk, and then talk some more to anyone interested and willing to listen. If others can climb onto their soapbox, so can we. In the public forum, be attuned to the “negative spin” that the media often puts on chronic disease. Speak up and correct it! Write a letter to the editor about that newspaper story or television show that got it wrong.
Humor
Humor isn’t about telling jokes. Humor is a life-affirming outlook of enjoyment and fun even in the midst of difficulty. People were often amazed when they learned that my husband—the dance floor diehard—was on dialysis. He would wink at them and comment, “It’s my medications, you know, that give me my energy. But they sure haven’t helped my golf game.”
Humor relaxes people, making them eager to hear more. “EACH” of us—as patient, care partner, or healthcare professional—must take the initiative to change perceptions, to let the outside world know that kidney disease can co-exist with a full and productive life. Only then will the distorted images become clear.
About the Author
Denise Eilers is both a healthcare professional and family member. Her husband Jerry was on traditional home hemodialysis (three days per week) from 1980 until his death in October 2004. Denise is a volunteer with Genesis VNA Hospice in Davenport, IA, where she resides. She also teaches nursing fundamentals at United Township Area Career Center in East Moline, IL.
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