Something in Common
Nurses with chronic illnesses cope with professional, personal and physical demands while inspiring patients with similar conditions

By Linda Childers
June 12, 2003

The young woman in the infusion clinic sat quietly preparing to receive her weekly treatment for multiple sclerosis.

Linda Upchurch, RN, knew the patient well, having administered her medication treatments for the past several years. The two women enjoyed a warm camaraderie and often shared laughs despite the humorless ambiance of their surroundings.

"How are you feeling today?" Upchurch asked, noting the young woman seemed subdued.

"Tired, tired and more tired," the woman replied, smiling wryly, knowing that of all the health care professionals she saw on a regular basis, Upchurch had the best understanding of her insidious autoimmune disease.

During the past 12 years, Upchurch has learned more about MS than she ever anticipated. Her knowledge of the disease comes not only from working in the Department of Neurology at the University of Texas Southwestern Medical Center at Dallas, but also from being an MS patient.

Upchurch is one of many nurses across the country who works a demanding job while battling a chronic illness. For nurses who suffer from chronic conditions including diabetes, neurological disease, asthma and arthritis, the nursing profession offers a chance to mentor patients with similar conditions and provide colleagues with firsthand information on how to best work with chronically ill patients.

New perspective

According to a 2001 survey conducted by Partnership for Solutions, a Washington-based research organization, 125 million Americans now live with chronic illnesses. By 2020, this number is expected to reach 157 million.

"Typically, nurses see patients only in the acute or terminal phase of an illness," said Kathleen Lewis, MS, RN, a former nurse from Marietta, Ga. "I never had a clue about the complexities of treating patients with chronic illness until I was diagnosed with a chronic illness myself."

Lewis, the author of Celebrate Life: New Attitudes for Living With Chronic Illness, was diagnosed 21 years ago with systemic lupus erythematosus, a potentially life-threatening chronic illness. The illness ultimately forced her to redirect her nursing background into a career as a writer, counselor and motivational speaker, where she continues to serve as an advocate for the chronically ill.

"Having a chronic illness means fighting a daily war," Lewis said. "Nurses with a chronic condition face challenges on social, physical and economic levels that their colleagues can't begin to fathom."

Fighting a chronic illness can prove to be especially challenging for patients who don't display any obvious symptoms.

"It's especially frustrating to look well, but feel incredibly poor," Upchurch said. "You haven't lost a limb or anything visual, so it's often hard for people to even grasp that you're ill."

Upchurch was a young mother with three children when she was first diagnosed with MS.

"At first, my symptoms were subtle. I felt a slight numbness in my hands and a tingling in my legs," Upchurch said. "I started dropping things, and I was tired, but I attributed that to not getting a lot of sleep after having twins."

Today, Upchurch continues to adapt to the challenges of living and working with a chronic illness. A divorced mother of three, she commutes two hours a day to her job, and returns home at night to care for her children, including a son, now 12, who was born with Down syndrome and multiple disabilities.

Despite the challenges in her life, colleagues characterize Upchurch as warm, open and upbeat. On a bad day, you may find her using a cane, but on good days she appears to have boundless energy.

"I've been extremely fortunate that my disease hasn't progressed drastically since my initial diagnosis," Upchurch said. "But I work with MS patients every day and I've seen how their conditions can change in the blink of an eye."

She admits that working with patients who have similar chronic illnesses can be both uplifting and frightening.

"I've developed many close, long-term relationships with my patients because I spend three to eight hours a day every month with them in the infusion clinic," Upchurch said. "The downside is seeing patients with MS who are my age and younger who are doing badly. I can't help but wonder if that's going to be me someday."

Upchurch often finds herself serving as a mentor to newly diagnosed patients and their families. She advises them to live each day in the present and to not obsess about the future. She also encourages them to prioritize, and tells them how in her own life spending precious moments with her children has become much more important than having an immaculate home.

Through the years, Upchurch has learned to shed her Superwoman persona. If she is especially tired after a long day, she doesn't hesitate to ask her colleagues for assistance.

"I tell my patients that when you have a chronic illness, you need to treat your emotional and physical energy like a bank account," Upchurch said. "Carefully choose where you spend your energy because if your expenditures outweigh your balance, you aren't helping anyone, including yourself."

Carpe diem

In her frequent speaking engagements, Lewis also encourages patients to live in the moment and to integrate their chronic illness into their life without letting it define their identity.

"At the beginning of my lectures, I used to say, 'Hi, I'm Kathleen and I have lupus,' " Lewis said. "Yet I never mentioned that I'm also a mother, grandmother, writer and counselor. I've learned to make my illness a part of who I am but not allow it to take over my life."

Carrie McGrath, RN, has learned this lesson well. In 1988, she was an 8-year-old diabetes patient at Children's Hospitals and Clinics in St. Paul, Minn. Today, McGrath has returned to the hospital as a nurse, working with children who have diabetes and other chronic illnesses.

"I had a wonderful diabetes educator when I was a child," McGrath said. "She definitely influenced my decision to become a nurse."

McGrath still remembers the fear and uncertainty that she felt after being diagnosed with diabetes. She remains insulin dependent, using an insulin pump for regular treatments.

"Both patients and their families have so many questions after a child is diagnosed with diabetes," McGrath said. "Children want to know if it means they can't participate in sports anymore. Parents want to know if it's something their children will eventually recover from, or if it will lead to an early death."

When McGrath tells patients she's a lifelong diabetic, they are often surprised. At 23, she is youthful and enthusiastic, a recent graduate of nursing school.

They sit enthralled when she describes how she's always led an active and athletic life despite diabetes. Her warm demeanor reassures children as she speaks to them as both a nurse and a former patient.

Carrie Cady, RN, of Children's Hospital and Regional Medical Center in Seattle, also serves as a role model to young patients and their families.

In 1990, Cady was diagnosed with asthma. Several years later, she was diagnosed with rheumatoid arthritis, fibromyalgia and Sjögren's syndrome, a chronic disease in which a patient's autoimmune system attacks the moisture-producing glands.

Cady keeps her chronic conditions in check by taking numerous medications, but even her prescriptions can't prevent the occasional bad days, when even minor tasks prove challenging.

"There are times where I can't open a baby bottle because my rheumatoid arthritis is so bad," Cady said.

For the past 16 summers, Cady has volunteered at Stanley Stamm Children's Hospital Summer Camp, a nonprofit camp where young patients from the hospital enjoy a week's respite. The camp was founded 37 years ago by Stamm, a cardiologist at Children's Hospital, Seattle, who wanted to offer children a summer venue where they could have fun while continuing their medication and treatments.

Cady and other staff donate their time as volunteers at the camp.

"I work with a lot of children with asthma and cystic fibrosis at the camp. We use our inhalers together and make a game of counting puffs," Cady said.

Children at the camp enjoy fishing, horseback riding and an array of other activities. All children are encouraged to participate despite their limitations.

"I remember one summer when a girl with cystic fibrosis wanted to ride a horse and one of the nurses walked beside the horse carrying an oxygen tank," Cady said.

Cady, who is fondly known as "The Bubble Nurse" for the wand of bubbles she always carries around her neck, hopes that her zest for life inspires her young charges.

"The children know I have several chronic illnesses but they see me blowing bubbles, shooting squirt guns and acting silly at the camp, and they realize that life can still be good," Cady said.

Contact Linda Childers at eastbaypr@aol.com