by Diane O'Connell
ages 16 to 21 are an in-between time for all young adults. They have one
foot in childhood and the other in adulthood. As they move toward their
own identity and away from the family orbit, big questions loom: Who am
I? What do I believe? What do I want? Where do I fit in? The same questions
loom for a young person with MS.
"It's important that young people don't define themselves in terms of the MS," stressed Deborah Miller, PhD, director of comprehensive care, Mellen MS Center, Cleveland Clinic. Her MS center provides care for almost 40 people in this age group. And yet the reality is that MS will affect many basic decisions.
She's now working part-time at a preschool center and plans to marry her boyfriend. He's been with her since before her diagnosis.
"I want to have kids and so does he," she said. "We both understand it may be difficult, but I've realized I really want to be a mom, like my mother. I have a lot more perspective than some of the people I met at college. I feel more mature."
Dakota Gorman, a recently diagnosed 18-year-old, has also considered the difficulties he might encounter in the future and has set his sights on a technical school. "I want to get a computer jobnothing with long hours or where there's a lot of stress involved," he explained.
Emilee Rankin, a strong-willed, wise-beyond-her-years 19-year-old college student who was diagnosed at age 16, is still wrestling with career choices: "If I choose to be a lawyer, will I be able to do it in five years?" she wonders.
Angela McKeever, a 19-year-old who has struggled with uncertainty since her diagnosis, said she's gained a better sense of herself from her boyfriend. "He is so supportive of me. I'm not used to making decisions for myself, and he's helping me learn to do that."
Dakota got friendship from his church members. "When they found out, they came and comforted me," he recalled. "They really helped me through it." He also finds help in MS self-help groups, even though he is the only teenager attending. "The people in these groups talk about things you can't hear anywhere else," he reported. "They're in their 30s, 40s, 50s. I see how they've dealt with their MSespecially what they've been able to do."
Dr. Miller suggests that young people check out the Society's "But You Look So Good" self-help groups, where attendees are either recently diagnosed or have been living with invisible symptoms for years. (For information on groups near you, call 1-800-FIGHT-MS.)
Educating oneself about MS is also vital. Some young people endure sleep disorders, mood swings, or serious depression without fully understanding that these problems may be linked to their MS. They may not tell their health-care providers about sleeplessness, crying spells, emotional problemsand the professionals may not ask! Symptoms like these can be controlled with medical attention, medication, and counseling, but only if they are exposed.
"I got a lot of flack from certain people who didn't believe I was sick," Allissa Strickland confirmed.
Sometimes peerseven close friendsreact to the news of MS by pulling away. After her diagnosis 19-year-old Angela McKeever lost a lot of friends, including a boyfriend of two years. "They were scared to be around me," she recalled. "I became so embarrassed at myself I decided on home tutoring." It was a very isolating choice. With a new boyfriend she gradually turned herself around.
"I graduated! I'm so proud of it. It was something I never thought I'd be able to do, but I was determined to walk across that stage."
While most established friends will take the news in stride, Dr. Miller recommends not telling everyone about the MS, especially not new acquaintances.
"They first need to get a sense of who you are," she explained. She advises the person with MS to wait until it's clear that a new acquaintance is an important friend. In dating, she pointed out, telling too soon may end a relationship before it even begins.
"Some girls are okay about it; some will just walk away," reported Michael Valenzuela. The 18-year-old Californian, diagnosed two years ago, works as a busboy in his grandmother's Mexican restaurant. He plans to study welding when he finishes high school and hopes to have his own welding shop someday.
"Teenagers are very resilient," Linda Samuel commented. "They really can incorporate MS into their sense of who they are. They're naturally hopeful and see life as full of possibilities."
Others, like Michael, simply have a philosophical approach. "I figure God gave me this disease, so that's what I have to do. I don't even think about it," he remarked.
When to tell?
Students with MS may not agree. "I don't want people to feel sorry for me, and I don't want my professors giving me better or worse chances than they give others," Emilee said.
At work, being up-front about the MS may be a good idea, or it may not. Addie Marchand, a 20-year-old who works at a Wal-Mart pharmacy, said disclosure has really helped make work less stressful because her supervisors realize she might need extra rest breaks. Other employers might not be so understanding.
No one is required to provide a diagnosis to an employer, evernot even if they need accommodations. A full understanding of employment rights and responsibilities is essential for everyone with MS. And employment for a young person facing a long life with an unpredictable disease is vital to ensure future income.
Addie sticks to certain daily routines to dampen her emotional ups and downs. Dakota makes sure to exercise and eat right. "Part of combating MS is having good health," he explained. Angela listens to music to help her relieve stress. "And I take long bubble baths!"
"When I'm feeling down, I go to the desert on my dirt bike and just think. It's my favorite place," Michael saidand he's not always alone: "Being with my friends out in the desert is fun. That takes away all my worries."
"I used to judge people a lot," said Emilee. "Now when I see someone on the street who's less fortunate than me, I'm more compassionate. You just don't know what's happened in people's lives to get them there."
Addie also feels that MS has had a positive effect. "It's made me realize that stuff happens out of your control. It's also made me a braver, stronger person."
|Diane O'Connell, a freelance health writer, is a frequent contributor to InsideMS.|
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National Multiple Sclerosis Society
Last updated February 2006