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  MS Under 21
by Diane O'Connell
 
     
     
  The 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.

Unknowns ahead
The most daunting challenge is the uncertainty. Even with the disease-modifying drugs, no one knows what MS will bring down the line. Decisions about the future are hard for everyone to make; with MS in the mix, decisions may need to be adapted—or even scrapped.

Allissa Strickland, age 19 and diagnosed at 16, was in college when vertigo, brought on by an attack, made it impossible for her to read. The symptom added to her feelings of being different from her classmates, and while she could have applied for the assistance of a reader or coach (see "Young Resources"), she decided instead to drop out. The episode changed her direction.
Allissa Strickland:
"My parents didn't have insurance when I first got sick. My injections cost $1,000 a month. Out of the blue, people from our church would show up at our house and give us money. There were anonymous donors, too."

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 job—nothing 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.

Learning to lean on others
"Because there is no security with this disease, it's important to find security in family and friends," Dr. Miller advised. "It's especially important for young people to have a confidant apart from the family. It helps them see that they can have normal relationships just like everybody else."
Addie Marchand:
"I've had three relapses in a year and a half. Most of the time, though, I don't think about it. I accept it and live with it."

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 MS—especially 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 problems—and the professionals may not ask! Symptoms like these can be controlled with medical attention, medication, and counseling, but only if they are exposed.

Standing out
"During your teens, it's so important to be normal and to fit in," observed Linda Samuel, MSW, a clinical social worker and senior programs consultant for the Society, who has worked with young people who have MS (and their family members) for 10 years. "But quite possibly MS will make you stand out."

It's not always visible signs of MS that bring unwanted attention. Most young adults have relapsing-remitting MS, and their symptoms—fatigue, confusion, numbness, bladder problems—tend to be invisible. Typically, they look perfectly fine between attacks, sometimes causing others to wonder if they're faking.
Dakota Gorman:
"My religion gives me the hope of going on and living each day to the fullest."

"I got a lot of flack from certain people who didn't believe I was sick," Allissa Strickland confirmed.

Sometimes peers—even close friends—react 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.

Discovering possibilities
Like Angela, Allissa Strickland also ended up being home-schooled her junior and senior high school years. Her attacks made it too difficult to continue attending class. With considerable determination, she remained connected to school friends. "When I felt good enough, I would go to watch basketball or volleyball games," she said. "I participated in choir. And sometimes I would just go in for a few hours and sit in classes to be with my friends."

"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."

A sticking point
For adults, injecting a disease-modifying drug is usually a private matter, but young adults often live with roommates. Sticking a needle into yourself can make others uncomfortable, they discover. Emilee had many difficulties in her college dorm, "especially when I'd have reactions. My roommates would freak out." She eventually opted for a room off campus, but even there she found the side effects interfering with her school work.

"I hated it so much I stopped," she said. Because the tingling sensations have returned, and she is worried that her MS may flare up, she is now trying out a new medication.

Allissa solved her problems with stress and pain from her once-a-week injections by enlisting a good friend who is a nurse to perform the task for her.

Why so young?

Typically MS is diagnosed between the ages of 20 and 50, but it has long been known that MS symptoms can begin at any age.

People diagnosed with MS between the ages of 16 and 21 are "less typical," but they do not represent anything new in the overall medical picture of MS.

Find out more about pediatric (childhood) MS and the Network of Pediatric MS Centers of Excellence being established across the country, visit www.nationalms society.org/PediatricMS.

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?
One place where disclosure is essential is in school, Dr. Miller believes. "We encourage young people to be very direct about their diagnosis with their teachers so the teachers can be attentive to changes in classroom performance that could be related to cognitive impairment or emotional stress."

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, ever—not 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.

Protecting the future
Social Security is usually associated with old age. But it may be a financial lifeline should MS symptoms become severe enough to prevent a person from working. There's a catch to bear in mind: Social Security Disability Insurance (SSDI), which pays a far higher benefit than Supplemental Security Income (SSI), requires a work history. It is measured in "credits"—one credit equals three months of employment. The requirement is calibrated to the applicant's age, but even those under age 24 must have six credits, or 18 months of employment, within the previous three years to be eligible. (Details are available from local Social Security offices or on www.ssa.gov.)

Learning to take control
"Many times MS provides a real opportunity to get insight and to gain maturity," said Dr. Miller. "I see many kids learning to be flexible and roll with the punches."
Emilee Rankin:
"I think everything happens for a reason. MS will help me in my life. I'm learning so much."

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 said—and 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."

 

For more information
Society brochures that may be helpful to younger people include But You Look So Good!, for people with invisible symptoms, Depression and Multiple Sclerosis, which details depressive symptoms and treatments, and Should I Work? Call the nearest chapter at 1-800-FIGHT-MS (1-800-344-4867).

 

 
     
 

Young Resources

To succeed in high school
A number of laws, including the Americans with Disabilities Act (ADA), provide protection and services for students with disabilities attending a public school. Under these laws, an individualized educational plan (IEP), including any necessary accommodations—such as extended test-taking time, readers for students with visual impairments, or equipment modifications—must be worked out between the school district and the student's parent or guardian. A parent or guardian has to contact the teacher, principal, special education director, or Section 504 coordinator to start the process.

A general overview of the IEP process can be found on the Web at: www.wpic.org/IEP.htm. More information, including a list of links to helpful articles, can be found at www.wrightslaw.com/info/iep.index.htm.

For additional help, call the National MS Society at 1-800-FIGHT-MS (1-800-344-4867). Chapter staff will connect parents to appropriate local resources and provide copies of Kids Get MS Too: A Guide for Parents Whose Child or Teen Has MS, which includes information on psychological, social, insurance, and school issues. The Society also offers some educational programs specifically for parents of teens and children who have MS.

To find or keep a job
Thanks to the federal Rehabilitation Act of 1973, every state in the U.S. is required to offer services to help people with disabilities or injuries who want to work. Every state's vocational rehab program is different, but for a general overview of what they offer, see Tamar Asedo Sherman's article in A Place in the Workforce, which you can get by calling the National MS Society nearest you. To find out what your state offers, look in the "governmental offices" section of your phone book for the phone number, or type "vocational rehabilitation" and the name of your state into your favorite Internet search engine.

Going on to higher education
Most colleges and universities receive federal funds for students with disabilities. In turn, the institution offers accommodations for eligible students—including modified academic requirement, and equipment aids or special helpers for students with visual or other impairments. The student starts this process by contacting the institution's disability services coordinator or the disability services office. This should be done as soon as the school has accepted the student so that accommodations are in place by the time the academic term begins.

 
     
     
 
For additional information
 Teen InsideMS Webzine
 Pediatric (childhood) MS
 Brochures
 
     
  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
 
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