DOME: A Healthy Approach to Chronic Illness

Search Dome

FEATURES

Top Story

-	Cutting Meetings Down to Size

News Reports

-	What to Do About the Flu
-	HopkinsOne Gets Real
-	A Woman's Journey Turns 10
-	Project REACH: ISO Qualified Candidates
-	A Will and a Way

Features

-	A Healthy Approach to Chronic Illness
-	Learning to Knit ... and to Give
-	The Pump Room
-	Precision Kitchen

Briefcase

Picture This

Letters

About DOME

Archived Issues

A Healthy Approach to Chronic Illness
Where to turn when you’re sick on the job

Nurse manager Anita Reedy, left, knows it's sometimes tough for Valerie Tucker to get through the day.

Oncology support associate Valerie Tucker roams the Weinberg halls daily, assisting leukemia patients. Quick with a smile, she cleans their rooms, distributes meal trays and transports them to appointments. Tucker rarely mentions her own aches and pains. Sometimes she’s so stiff, she can barely walk.

Tucker has lupus erythematosus, a chronic inflammatory disease she’s lived with since 1990. Lupus—Latin for wolf—attacks the skin, eating up tissue and inflaming joints. Flare-ups bring painful skin lesions to the face and neck, not to mention fatigue. Drugs help, but symptoms can worsen without warning. “Some days, it takes a lot of strength,” Tucker says, “especially because, in my case, it’s invisible.” Fortunately, her co-workers pitch in a little more when symptoms escalate, and supervisor Anita Reedy is understanding about doctor’s appointments and the need to slow down certain tasks.

In 2002, Maggie Dudik, then a Wilmer OR nurse, learned she had breast cancer. For six straight weeks, Dudik spent her lunch hour getting radiation therapy, even as she put in 12- to 14-hour days. Today, Dudik works in radiation oncology and is in remission, but she considers her cancer a chronic illness because of the constant follow-up and chance for recurrence.

Chronic disease—conditions that persist or frequently recur—is the most prevalent health care problem today. Living with a chronic illness while earning a paycheck is fraught with challenges. A nurse with diabetes has no time to grab a snack on a busy morning; lightheadedness takes over. A resident with asthma must beware of allergens that can trigger an attack. A nutrition assistant combats fatigue following radiation for breast cancer. For employees like these, help is at hand:

EHP’s Disease Management Program. This new EHP benefit provides free nursing support around the clock for employees with chronic illness. Reflecting a trend in the workplace to focus on preventive care, the program is designed to help employees understand their disease, control their symptoms—and keep them healthy while on the job. Linda Dunbar, vice president of care management at Johns Hopkins HealthCare, estimates that 25 percent of all Hopkins employees could benefit from the program.

JHHC nurse case manager Barbara Duffy aids Micki Jones.

Nurse case managers, supported by a health educator, keep tabs on patients’ conditions. For low-risk patients, interventions might include depression screening, weight management or smoking cessation. For others, like Michelle “Micki” Jones, a JHHC administrative assistant who has type 2 diabetes, there is ongoing support. “I couldn’t get a handle on which foods I should or shouldn’t eat to regulate my sugar,” said Jones. So she signed up for the program. Her case manager, JHHC nurse Barbara Duffy, helped her with her diet and taught her how to take various health measurements such as blood pressure and glucose levels at home. Every day, Jones reports these measurements on Telewatch, a phone-in system that allows her to answer a set of questions by entering numbers on her telephone touch pad. Duffy keeps track and makes sure Jones is within the normal range. She also forwards Jones’ reports to her health care providers.

EHP began offering its disease management service to Health System employees in 2003. Three chronic illnesses—cardiovascular disease, diabetes and asthma—are monitored. In November, during the annual enrollment period, EHP will be offering care management services to JHU faculty and staff. Added to the chronic conditions already monitored will be oncology and pulmonary disease. (Check with your benefits office about similar programs offered through other insurance providers.)

Wellnet. Under the direction of Patti Moninghoff, this 10-year-old network of preventive health services throughout the Health System and Hospital offers health assessments, educational seminars and motivational programs. Housed in Phipps 409, Wellnet offers a personal wellness profile, weight management, exercise (aerobics, Yoga and walking groups), health screenings and a resource library, which includes videos. JHU Benefits Administration also offers wellness activities to employees through Occupational Health.

Faculty and Staff Assistance Program/WORKlife. When chronic illness affects your mental health or ability to function at work or at home, these two services, available to JHU faculty and staff, can help. FASAP offers free, confidential psychological assessments. Social workers, psychologists and therapists make recommendations and provide brief interventions and referrals for appropriate services. FASAP interfaces with WORKlife, a consultation and referral service for child care, elder/adult dependent care, and other issues blending personal and work life. WORKlife support groups have helped many employees cope with illness.

—Judy Minkove

All About Image

Don’t underestimate the healing power of looking your best, even if you’re not feeling up to snuff, says cancer survivor Marianne Kelly. Kelly is the founder of the Image Recovery Center, on Weinberg’s ground floor, a shop that helps patients experiencing cosmetic side effects from cancer or other diseases look their finest. She says a growing number of her clients are Hopkins employees.

Kelly, who operates similar centers at other Baltimore-area hospitals (and one in Ohio) helps clients camouflage hair loss (including eyebrows and lashes), skin eruptions, scarring and mastectomies. The initial consultation and makeup application are free. Insurance often covers the cost of wigs and breast prostheses. Other services—available for healthy employees too—include manicures, haircuts/color and massage. Says Kelly: “While you’re trying to absorb your diagnosis, work and maintain a normal life, it’s especially hard to hide cosmetic changes.” Hopkins employees receive a 10 percent discount on all services.

Workplace Dilemmas

You’ve just been diagnosed with a chronic illness. You want desperately to hold onto your job. What should you do first?

Call Human Resources for a “Family Medical Leave Act” form. Enacted in 1993, the FMLA mandated that employees who need personal time off for childbirth, adoption or their own or a loved one’s illness are entitled to 12 weeks’ leave without fear of losing their jobs and medical insurance. The leave can be either continuous or intermittent in a rolling 12-month period, as long as you’ve held your job for a year.

If you feel comfortable, let your supervisor know you’ve been diagnosed with an illness (you don’t have to identify it), so your job will be secure if you need time off. But, says oncology Human Resources Director Kim Meadowcroft, “if you don’t want to evoke pity, don’t say anything for a while.” You may not have a choice, however. Dialysis, chemotherapy or other treatments will likely cut into the work day, so you’ll need to work out an arrangement for time off.

What if you just don’t feel up to coming to work?

Everyone’s entitled to sick days. The important thing, says Mary Carole Kirkpatrick, director of health and welfare for the JHHSC/JHH Department of Human Resources, is to get your symptoms under control so that, even with aches and pains, you can get through the day.

How do you deal with your co-workers’ responses?

The trick, says social worker Louise Knight, director of Patient and Family Services at the Weinberg Center, is to be fair. “Offer to make up time to someone who’s held down the fort while you were out,” she says. Small gestures—like bringing in bagels or donuts—send the message that you appreciate your co-workers’ sacrifices on your behalf. Recognize that the people shouldering the responsibility for you when you’re out or unwell may begin to feel resentment.

These reactions are understandable, says a physician with a chronic illness who declined to be named for this story. When you divulge you have an illness, some colleagues are extremely supportive, while others appear uncomfortable, the doctor noted. “The main thing I wish I could get across is the obvious point people seem to forget: People trying to work despite a chronic illness are just people. It’s fine to ask what’s going on. If the person doesn’t want to talk about it, he or she will tell you.”

RESOURCES

Human Resources
www.hopkinsmedicine.org/jhhr/ or www.jhu.edu/hr/

EHP Disease Management Program
410-762-5213

Wellnet
410-955-9538

Faculty and Staff Assistance Program (FASAP)
www.fasap.org

WORKlife
443-997-6605 or www.hopkinsworklife.org

Image Recovery Center
www.imagerecovery.com