From the Archives: Summer 2006 Lupus Now magazine
College Prep: New Surroundings and Hectic Schedules Are Among the Many Challenges Students With Lupus Must Manage
by Mary Dixon Lebeau
At the end of summer, Sherri Long will head back to college.
Long, 21, will be entering her senior year at Temple University in Philadelphia. The Colorado native, a human biology major participating in the university's Honors Med Scholar (combined B.A./M.D.) program, will pack her books and her clothes, say goodbye to her family and friends, and return to campus, studies, and activities -- just like millions of students across the country.
But, unlike most of her peers, she faces challenges on campus beyond mastering academics and juggling an active social schedule. Long, who was diagnosed with systemic lupus when she was 12, must also make sure a support system is in place to help her deal with her illness -- no easy feat for an active young person 2,000 miles away from home.
Although the honors student makes college life seem like a breeze, she admits that wasn't always the case.
"In all honesty, freshman year might have been the worst year of my life," she admits. "I was a complete mess, not completely due to dealing with lupus for the first time by myself.
"Things were so rough that now, I hardly remember most of what happened that year -- almost as if I had blocked it out, and while I have absolutely no desire to go back to where I was during that time, I am actually grateful for what I gained," Long continues. "My freshman year was a crash course in learning to be responsible for myself and, looking back, I wouldn't trade it for the world."
Like Long says, most young people find that first year in college to be a crash course in growing up, a rite of passage between childhood and adulthood. For most, the first year is a time of increased independence and increased responsibility. For students with lupus, college may also mean taking more responsibility for managing the illness as well.
"Eventually children become adults, and must take care of themselves and take charge of their disease," says Michael Lockshin, M.D., professor and director of the Barbara Volcker Center for Women and Rheumatic Disease in New York. Fortunately, with the right information and proper support system, young people with lupus can thrive on campus, as Long and other students like her are proving.
Of course, the groundwork for such success is laid long before the student even arrives on campus. As they research schools and programs, the high school juniors and seniors with lupus should keep their medical care in mind, and make decisions that will best serve them during their time at college. "There are no right answers. It's a very individualized process," says Lockshin. "It depends on the maturity of the teenager and the degree of the illness."
One of the first decisions any college-bound student makes is where to go to school, and this choice may be even more difficult for those with lupus. After all, most young people are accustomed to having mom or dad help them with everything, including their medical care. Trading that support for an independent life on campus may sound frightening to some, while others will find the idea exhilarating.
Again, it all depends on the individual. Some find life on campus too noisy and chaotic, while others who commute may find the travel too tiring to allow them to focus properly.
Long says her decision to attend Temple was based on the academic opportunities the school presented her. "It was hard to leave home, and my parents were worried as any parents would be, but ultimately they were just very supportive in helping me follow my dream," she says.
For Sarah Kaiser, 18, the decision was based more on finances than medical concerns. Kaiser, who was diagnosed with lupus at 14, will be a Vincennes University freshman in the fall. She decided to commute from her Indiana home for the first two years and hopes to transfer farther away when she's a junior.
"Lupus didn't really affect my decision to stay home. I try not to let the disease hold me back any," she says.
Whether they're commuting or living on campus, Lockshin encourages college-bound students to discuss their plans with their physicians.
"I sit down with the student some time in the summer, long before he or she leaves for school, and outline what to do in different situations," he says. This includes the expected, such as what to do in case of a flare, as well as the unexpected. "I discuss sex, drugs, and alcohol, which are often a part of the college experience," Lockshin says.
If you are going away to school, your doctor can identify a physician and health care facility close to campus where you can go for help. Lockshin also encourages his patients heading to college to keep him informed of any healthcare concerns that arise while they are away.
"I make that contact for my patients before they go," he says. "The main issue is not to break the lines of communication, and to have resources available if you need them."
College life presents the young person with a new freedom and all sorts of opportunities, and the temptation may be to do too much all at once. "Starting college is difficult and stressful for all freshmen," says Carla Martinez, coordinator of student leadership at Orange Coast College, Costa Mesa, CA. "For a student with lupus, it can be more challenging because stress leads to flares," adds Martinez, who also has lupus and was diagnosed right before attending graduate school.
A chronic illness like lupus is problematic because it's unpredictable, says Lynn Royster, Ph.D., special adviser for the Chronic Illness Initiative at the School for New Learning at DePaul University in Chicago. "You may feel great in the beginning of the year, and take on courses and activities based on that. Then three or four weeks into the semester, you have a flare, drop out for a week or two and find yourself unable to catch up. You lose time and money, and that may stress you even more."
Royster suggests easing into the college routine. "Start small, and get used to the environment," she says. Another option is to mix in-class coursework with online classes, which may offer more flexibility.
Of course, there are plenty of life lessons learned outside the classroom, and participation in extracurricular activities enhances the college experience.
"Having lupus really doesn't affect my involvement in activities," says Long, who is a member of the school's rowing team and participates in community services projects at Temple. "I just have to respect that my health comes first."
In fact, Long says her involvement in activities has helped her deal with the occasional flare. "I actually manage my time better when I'm busy and need to make a schedule for myself," she says. Even better, the rowing team has become a support network for Long. "They're like a second family," she says.
Long's own participation on the NCAA Division I team is exceptional, to say the least. In high school, she participated in competitive ice hockey and lacrosse; however, a knee injury right before college forced her to bypass all sports during her freshman year. As a sophomore, she decided to try out for rowing, a year-long sport totally new to her, and -- despite the demands rowing puts on her arms and legs -- Long made the varsity team, which regularly practices at 5 a.m.
"Sometimes it's really hard to get out of bed in the morning, and I struggle a lot more when it's really cold," Long says. "But ultimately, I realize this is good for me."
When she had her first flare as a member of the team, Long worried that her teammates and coaches would think she was letting them down. "Instead they flooded me with support," she recalls. Although most lupus patients may not be up to the grueling routine Long embraces, most would benefit from the camaraderie that comes with participating in extracurricular activities. Martinez advises first-time students to take it slow and ease into the social scene on campus. Focus on the activities that are flexible and allow you to gain experience in your field, and never underestimate the value of friendships.
Chronic illness is a matter of confidentiality on campuses, so you alone will decide who knows about your condition.
"Personally, I think it's best to share the fact that you have lupus," says Martinez. "Introduce yourself and tell the professor about your illness before it becomes a problem. Most are willing to work with you if they know what is going on."
Long also found that being up front with other students helped while she was living on campus. She told her roommates about her diagnosis when they first met. "They were instantly and always supportive and interested in learning more about the condition," she says. In fact, if you choose to share your diagnosis with others, you should be prepared to educate them as well.
Sometimes lupus can't be kept secret. For some, their appearance may signal that something's wrong. "It's difficult for a young person to go into a situation where she 'looks funny,' " says Lockshin.
He encourages disclosure. "If you're not too sick, you may just be making things harder by not talking about it," he says.
If you are living in a dorm, be sure to let your resident advisers know about your lupus. After all, they are there to help. Also make sure the campus medical facilities know you have lupus. Share your history with school health officials, make contact with the local caregivers, and email your primary physician if you have any questions or concerns.
Making the Grade
For any young person facing adulthood, it's important to face limitations and address problems as they arise. For most people with lupus, energy is a primary concern. After all, keeping up with the academic and social demands of college life is difficult for anyone, and a person with lupus often feels tired all the time.
"The fatigue was probably the most significant factor that affected my role as a student," says Martinez. Most of her classes were in the evening, and Martinez found she was especially tired and unable to focus at the end of a day. "To help with the late nights, I would try to find time to take a quick nap in the afternoon," she says. Many schools provide "nap rooms," "quiet areas," and other places to rest on campus. Inquire at the office for students with disabilities for the locations of these areas.
Long had the opposite problem. "Since I'm naturally a night owl and tend to procrastinate, I used to pull all-nighters," she says. But she found that the overnight study sessions left her worn out. "This irresponsibility on my part was really bad for my body. Stress is poisonous to people with autoimmune diseases, and lack of rest is a significant cause of stress that's really easy to overlook."
The best advice -- protect yourself. Identify what you can do and, if you can't do something without feeling exhausted, don't do it.
"Have accommodations in place," advises Martinez. "Your disabled student services office is a good place to start to find out about such things as priority registration and test-taking accommodations."
Reflecting on her own college experience, Long says, "The most important thing is to find a balance between staying healthy, keeping your grades up, and enjoying a social life with extracurricular activities."
Finding the balance can be a challenge at first, but learning to do so may be the most important lesson you'll learn in college -- one that will serve you throughout your adult life.
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