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.
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
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 adaptedor even scrapped.
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.
"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 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.
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."
"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
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.)
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.
"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."
not always visible signs of MS that bring unwanted attention. Most
young adults have relapsing-remitting MS, and their symptomsfatigue,
confusion, numbness, bladder problemstend to be invisible. Typically,
they look perfectly fine between attacks, sometimes causing others
to wonder if they're faking.
"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
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'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.
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."
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."
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.
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.
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
MS is diagnosed between the ages of 20 and 50, but it has
long been known that MS symptoms can begin at any age.
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.
more about pediatric (childhood) MS and the Network of Pediatric
MS Centers of Excellence being established across the country,
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,"
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
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,"
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.
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.)
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."
"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 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."