As a registered nurse in the cardiovascular intensive care unit at the University of Michigan Hospital in Ann Arbor, Allan Kucab is on his feet 12 hours a day, three times a week, tending to his adult patients. He boosts them up in bed, turns them over and gets them up to walk. “By the end of the day I’m exhausted, both physically and mentally,” says the 28-year-old, who has severe hemophilia A. “I come home and I’m ready for bed.”
The exhaustion, though, is tempered by the rewards. “To see how you can positively impact someone’s life is amazing,” he says. “I sometimes get overwhelmed with emotion because I’m helping people through very difficult times.”
Kucab is not alone in his desire to have a fulfilling and interesting career, despite having a chronic disease. Thanks to advances in the treatment of hemophilia—and changing attitudes about what people with bleeding disorders can do—more and more young people today are enjoying a variety of career opportunities.
For Nick Gamber, a senior at Eastern Michigan University in Ypsilanti, a love of talking led to a career path that will allow him to do just that—as a high school social studies teacher. It helps that he has a strong interest in history and that teaching will not stress his joints, an important consideration for the 21-year-old, who has severe hemophilia A. “It just seemed like a natural fit,” Gamber says.
Brandy Miller, 25, is a night owl by nature. That, coupled with her love of customer service, makes her current job ideal. She’s a manager at a movie theater with 20 screens in Lansing, Michigan. “I love the interaction with customers,” Miller says. “I get to problem-solve quickly to make the guests happy. Mostly I have positive interactions.” Though she works full time, Miller, who has von Willebrand disease, is also attending college to pursue a degree in business.
Although these young people have bleeding disorders, they are pursuing their chosen careers. Still, all had to carefully consider the impact of their disorders on their choices by asking the following questions: What will bring me satisfaction over the course of my working life? What physical demands will my career place on me? How will I get my medications paid for?
Exploring Career Choices
“Getting teens to think about tomorrow is hard enough, let alone getting them to think about the more distant future,” says Shannon Veronesi, health educator for Hemophilia of Georgia in Atlanta. Her chapter has developed programs to help young adults not just think about their future, but plan for it.
The chapter has a youth leadership program, developed in collaboration with GUIDE Inc. (Gwinnett United in Drug Education). GUIDE is a nonprofit community-based drug prevention agency that encourages youth and parents to make healthy decisions about alcohol, tobacco and other drugs. Its programs empower youth to take responsibility for their decisions and actions.
Through the Hemophilia of Georgia/GUIDE program, teens “try on” various careers. Participants pick a job out of a hat—like lawyer, doctor, teacher or nurse—and develop a budget based on the earning potential of that career. In addition to planning for day-to-day living expenses, they have to think about insurance, necessary for getting their factor concentrate paid for. “We want our young adults to be successful in the sense that they will be able to live independently and provide for their bleeding disorders,” says Veronesi.
At the chapter’s summer camp, teens can also get a crash course in a number of career choices, such as cooking, photography, woodworking or publishing. If a teen is interested in writing, he will learn how to interview, research and put a story together. “We try to get them to think ahead,” says Veronesi. “They’ll learn, for instance, that if you want to be a chef, you’re going to have to stand on your feet for hours. There’s a lot of physical work involved.”
The Indiana Hemophilia & Thrombosis Center in Indianapolis shares the same goals, but uses an outreach approach. “Because the center covers such a large geographic area, it’s difficult for many of the teens to come to us. And it’s hard to counsel over the phone,” says Don Molter, career counselor for the center. For this reason, Molter travels throughout the region to high schools, meeting with students, parents and education teams. Together they review class schedules and discuss the students’ needs. He provides career counseling.
The center also has partnered with Baxter for a program called Careers Education and Opportunity (CEO). Geared to 13- to 18-year-olds, the one-day program is held at the chapter’s annual meeting in August. Participants choose a career and are given a virtual salary and a checkbook. Throughout the event, they visit designated tables to pay bills, including a “good luck/bad luck” table for unexpected events. “They get to see how hard it is to exist with certain careers, especially the low-level, noncollege careers,” Molter says.
It’s natural for teens to resist thinking about the future. It’s even harder if they don’t have a clear vision about what that future will be. “Often our teens get bogged down thinking about traditional work environments, and they resist that,” says Anne Henningfeld, education and youth programs coordinator at the Hemophilia Foundation of Michigan. “If you grow up in a family where your parents don’t do what you want to do, it’s really hard to imagine a career that will give you satisfaction. A strong career counselor—someone who knows your interests—can help you think creatively about what you can do.”
Henningfeld helps teens who visit the chapter’s office in Ypsilanti explore career options. “Having a job doesn’t mean that you have to leave your childhood behind,” she says. “I encourage teens to find jobs that make them feel young, that don’t make them feel like they’re stuck in the work force,” she says. In her counseling, she recommends teens do the following:
Explore what you like to do in your free time. Think about how you can turn it into a career. “For instance, I loved being outdoors,” Henningfeld says. “So I found a job leading trips for kids in the summer, which eventually led to my current job.”
Take a career interest inventory. Most tests are available through school guidance departments. “They can really open a teen’s eyes to a world of possibilities,” maintains Henningfeld.
Interview someone who has a job that might interest you. If possible, conduct the interview at the individual’s workplace and spend the day there.
Do an internship. Volunteering over the summer, or doing a part-time internship during the school year, can help you see what a particular job entails.
Find a mentor. If there is an older person with a bleeding disorder whose work-related achievements you admire, ask if he will mentor you. “Building a relationship with someone who has a life that you respect can help make a big difference in moving toward your own decisions and eventual independence,” says Henningfeld.
[Steps for Living: Building Independence]
Considering the Physical Demands
Though Kucab loves his job as a critical care nurse, he sometimes wonders how long he can keep going. “I bend down a lot in my job, and for a while, it was taking a toll on my knees,” he admits. “I know that long-term, it’s not the best fit for me.” He sees his job as a stepping stone to a less physically demanding nursing position down the road. That flexibility was one of the reasons he chose to become a nurse.
Miller feels lucky that her career choice meshed with her physical needs. “One of the things that attracted me to customer service was that it’s not hard on the joints,” Miller says.
But it’s not always easy to find a career that’s compatible with a bleeding disorder. In fact, young people’s dreams of a career can be unrealistic. “We’ve seen quite a disconnect in what they want to do and what’s feasible,” says Gail Day, LCSW, a social work supervisor with Hemophilia of Georgia. “I’ve talked to boys with severe hemophilia who want to become football players or do some other very physically demanding job.” To steer young men in a more realistic direction, Day teams up with the nurses at her center to discuss the medical implications of a particular career choice, such as the strain it can put on joints.
If you’re set on working in a physically demanding job, Veronesi advises thinking creatively. Instead of stocking shelves at a home improvement store, for instance, see if you can drive the vehicles that carry the merchandise. “Know where a job can take you five or 10 years down the road,” says Henningfeld. For example, if you want to build homes, find out which job would best position you to grow into a supervisory role.
[Steps for Living: Jobs & Careers]
Insuring Your Future
It’s a simple, but unavoidable fact: Your career choice will determine your ability to get health insurance. “I can’t express how important health insurance is,” says Henningfeld. “I always tell teens, ‘You can pursue any dream you have, but consider your healthcare situation first.’ ”
If you’re under age 19, you’ll still be covered under your parents’ plan. In fact, most plans cover dependent children if they’re going to school full time until they reach the age of 25. But many young people wonder what comes next. (See “Health Insurance for Young Adults.”)
David Linney, the hemophilia financial services project coordinator for the Great Lakes Hemophilia Foundation and a consultant for NHF, recommends getting a job with a large employer. “Larger companies tend to have better health insurance plans,” he says. “The Cadillac of plans often still remains with school systems and local governments.”
Even among employers that offer health insurance plans, the benefits can vary widely. Linney cautions against bringing up the issue during a job interview. By law, you’re not required to disclose your medical condition unless it affects your job performance, but simply inquiring could raise a red flag with the interviewer.
Linney suggests waiting until you get a job offer before reviewing the company’s insurance plans. Before you accept, check out the medical benefits and review them with your treatment center, he suggests. Trying to figure out if and how factor concentrate is covered is no easy task, Linney admits. “It’s a catch-22,” he says. “You won’t find a listing for clotting factor concentrates in the benefits book.”
Questions you’ll need to ask your potential employer’s insurance provider include: What type of policy is this? What are the premium costs? Are co-pays very high? Will I be able to keep my existing doctors? Is there an annual cap or a lifetime cap for reimbursements? If so, what are they?
“It’s important to acknowledge your own needs,” Linney says. “If you’re using $200,000 to $300,000 worth of factor a year, your needs are going to be very different from someone who’s using a lot less, and that can affect reimbursement and your lifetime limits.”
Some people simply can’t see themselves working for a corporation or the government. Others dream of becoming an artist or musician, or even opening their own business. Henningfeld acknowledges that it’s important not to deny your dreams, but has some practical advice. “If you’re an artist, think about pursuing a solid job in the arts, such as in advertising design or public arts work,” she says. “A musician can teach music while performing on the weekends. If you want your own business, grow it on the side while you work full-time for a company that provides health benefits.”
No matter what career path you pursue, obstacles will lie ahead. “Always aspire to achieve excellence, set your goals high, work hard and remember to make time for the things you love along the way,” says Kucab. “If you keep those things in mind, your final destination may remain unchanged or continue to evolve, but the end result will be happiness and an overwhelming sense of accomplishment.”
[Steps for Living: Looking Beyond High School]