ES 6024 6/05 $1 General Information For Information: 1-800-FIGHT-MS z nationalmssociety.org When a Parent Has MS A Teenager’s Guide The National Multiple Sclerosis Society is dedicated to ending the devastating effects of multiple sclerosis. z z z z National Multiple Sclerosis Society 733 Third Avenue New York, NY 10017-3288 Tel: (212) 986-3240 Fax: (212) 986-7981 National Web site: nationalmssociety.org E-mail: [email protected]For Information: 1-800-FIGHT-MS z nationalmssociety.org
Transcript
ES 6024 6/05 $1
General Information
For Information: 1-800-FIGHT-MS nationalmssociety.org
When a Parent Has MSA Teenager’s Guide
The National Multiple Sclerosis Societyis dedicated to ending the devastating
effects of multiple sclerosis.
National Multiple Sclerosis Society733 Third Avenue
New York, NY 10017-3288Tel: (212) 986-3240Fax: (212) 986-7981
For Information: 1-800-FIGHT-MS nationalmssociety.org
The National Multiple Sclerosis Society isproud to be a source of information aboutmultiple sclerosis. Our comments arebased on professional advice, publishedexperience, and expert opinion, but do notrepresent individual therapeutic recom-mendations or prescription. For specificinformation and advice, consult your per-sonal physician.
The Society publishes many other pamphletsand articles about various aspects of MS. Toask for these, or for other information, call theNational MS Society at 1-800-FIGHT-MS(1-800-344-4867).
All our publications are on our Web site, alongwith handouts called "Basic Facts" on varioustopics. For a list, click the bar on our homepage called “Library”. If you have no access tothe Internet, just call your chapter and ask fora copy of the latest Publications List.
Some of our popular pamphlets include:
ADA and People with MSPlaintalk: A Booklet About MS for FamiliesManaging MS Through RehabilitationLiving With MS
Thanks and acknowledgments for essentialmaterials, quotations from teen group mem-bers, and advice on the issues from PamelaCavallo, MSW, author of the original edition;Melinda Gaffney, Rosalind Kalb, Ph.D.;Deborah Miller, Ph.D.; Wendy Sullivan,CSW; and contributors to the Teen InsideMSproject of 2000. Additional thanks to teenvolunteers at the Central New EnglandChapter and to members of the NationalPrograms Advisory Committee.
Design: Carolyn Thomas.
This publication is supported by contribu-tions to the National Multiple SclerosisSociety from its members and friends.
Reviewed by members of the ClientEducation Committee of the NationalMultiple Sclerosis Society’s Medical AdvisoryBoard.
by Diane O’Connell with the Programsstaff of the National MS Society
2 When a Parent Has MS: A Teenager’s Guide 3
Introduction
This booklet explores the experi-ences of some people whoseparents have MS. Some areteenagers and some are youngadults who remember what itwas like. Their problems rangefrom minor annoyances, likehaving to be extra careful not toleave things on the floor, todeeper emotions of anger,embarrassment, and guilt. Theyagreed to share their stories andsuggest some ways of dealingwith what happens when a par-ent (or someone else at home)has MS.
Here’s what’s inside:
4 How Your Parent’s MS Affects Youlays out some common experiences.
11 What You May Not Know About MSdescribes some invisible MS symptomsthat may be making home life harder.
12 Speaking Up for Yourself givesstrategies for opening up tough topics.
18 Taking Care of Yourself offers prac-tical ideas on coping with the stresses.
25 The Good Stuff. Surprise! There aresome real benefits to having a parentwith MS.
How Your Parent’sMS Affects You
If you’ve been living with your parent’s MS for awhile you already know MS isn’t the end of theworld. But you’re not a rotten person if you havesome dark thoughts. All teens of a parent withMS have to put up with a lot more than theirpeers with healthy parents. Here are some com-mon experiences teens have shared with peopleat the National MS Society:
More Chores“We have a lot of choresthat my friends don’t have,”said Anne. “We have tomake dinner, clean up, dothe laundry—all that stuffthat my friends’ parentsusually do.”
More chores usually meanless time for sports, getting together with friends,or doing the things you like. “Last summer Icouldn’t go to the beach with my friends becauseI had to do things at home,” said Matthew. “Andnow that I have my license, I’m always gettingasked to drive here, drive there.”
UnpredictabilityBecause MS symp-toms can rise andfall like a seesaw,it’s hard to knowwhat to expect fromone moment to thenext. A person with MSmay feel fine for months andthen suddenly become weak ortired. “You can’t do anything spon-taneously,” said Caitlin. “And things can gowrong at the last minute. We were going on avacation last year, but my mother had an exacer-bation just before it, and she couldn’t go. The tripwas canceled. It was a bummer, but that kind ofstuff seems to happen a lot in our family.”
A parent’s moods and memory can also beunpredictable. He or she may have outbursts ofanger, or may give permission to do somethingone day only to forget it the next. “If I tell mymother something, I never know if she’ll remem-ber it,” said Josh. “Like I’ll want to go to a con-cert, and she says yes, and then later sheblanks out about it.”
Getting places is also often complicated andunpredictable. A parent with MS may be okay to
4 When a Parent Has MS: A Teenager’s Guide 5
ing stress,” said Kayla.(There’s no compellingscientific proof thatstress makes MSworse, but it makeseveryone feel worse.)
In addition to beingmade to feel guilty, realguilt can creep in for any number of reasons.Lashing out at a parent in anger, hurting a par-ent’s feelings out of frustration or embarrass-ment, slacking off on household chores, or fight-ing with a sibling can all make a person feelguilty afterward.
Lack of UnderstandingOnly someone who lives in a household with MSknows what it’s really like. And that can make ateen feel isolated. Heidi expressed this feeling:“My friends don’t understand the pain I feel see-ing my mom in pain and me not able to help.They don’t understand why my mom is alwaysnapping. They don’t understand why one dayshe’s on her feet and happy, and the next dayshe’s in her wheelchair, depressed.”
“Friends say they understand but they don’t reallyknow,” said Eric. “They don’t understand how mad Iget when they put people down for being ‘different.’”
drive one day and unable to drive the next. “Youspend a lot of time finding people outside yourfamily to drive you places,” Adam said.
Money StrainsThere’s no question that MS puts a financial bur-den on a family. There may not be enoughmoney for extras, like music or sports lessons,new clothes, or the movies. As Rachelexpressed, “You can’t ask your parents formoney, because medical costs use up most ofwhat they have.”
Money for the future may also be a worry: “I’mafraid that we won’t haveenough money forme to go to col-lege,’” said Todd.
The Guilt TripSometimes adultswill use a parent’sMS as a way to get ateenager to conform. Some kids have said theirteachers use guilt to get them to do better inschool.
Even parents can put this burden on their kids.“Both my parents will ‘guilt’ me, saying I’m caus-
6 When a Parent Has MS: A Teenager’s Guide 7
to make theirkids feel safe.When a parenthas MS, fragilehealth turnsthose “supposedto”s upside down. “Iworry a lot about my mother,” said Beth. “Shehas an electric scooter and I worry that she’ll getrobbed out on the street. I love her, and I don’twant anybody taking advantage of her. She’salways in the back of my mind.”
Many people in a family with MS worry abouttheir parents’ future ability to function. “Who willtake care of her? How will that affect me?” arequestions that invade the thoughts of many ateen whose parent has MS.
EmbarrassmentHaving a parent who uses a cane or a wheel-chair, who has poor coordination or slurryspeech can make the whole family stand out in away that feels uncomfortable.
Kevin remembered a painful episode: “When Iwas about nine, Mom came to my soccer gamein her wheelchair. Some kid said, ‘Who’s thekooky lady in the wheelchair?’ and I pretended Ididn’t know.”
Getting AngryIt’s normal for everyone in a family to feel angrynow and again about the demands that MS cre-ates. It’s normal to feel anger at the illness itself.But sometimes it’s hard to separate the illnessfrom the person who has it.
Toni had this to say about her mom: “She can bereally annoying, and I wonder if she could do morethings for herself if she only tried a littleharder. I think she sometimes usesMS as an excuse. I don’t knowwhy this had to happen toher, to our family—to me! Ilove my mom, but shecan make me somad.”
Feeling ForgottenPeople are naturally con-cerned about someone withMS and will inquire how that per-son is doing. But that can makeother family members feel left out. “No one asksabout you or what you’re doing,” said Kayla.
Being AfraidParents are supposed to be the ones who arestrong, who are in charge. Parents are supposed
8 When a Parent Has MS: A Teenager’s Guide 9
MS is irritable or hard to live with. Here aresome of them:
DizzinessWeaknessFatigueTinglingNumbnessLoss of balanceTemporary loss of ability to move legs orarmsBlurry or jumping visionHot band of pain around the torsoCrampy or extremely tensed muscles(spasticity)Pain in a body part for no apparent reasonHeadacheNeed to urinate without delayConstipationEmotional roller-coaster feelingPoor memory for recent eventsInability to make decisions quickly
These symptoms are caused by slowed nerveconduction (the nerves’ ability to carry mes-sages). They are all recognized MS symptoms.They come and go, sometimes so quickly thatpeople with MS don’t know how they will feelfrom one hour to the next.
“Sometimes strangers look disgusted, and Iknow they think my dad is drunk or retarded,”said Jessica.
Emotions are messy. They don’t march in neatrows or take turns appearing one at a time. Theyget all mixed up. It’s normal to love and be angrywith a parent at the same moment. It’s possibleto worry about the future, be impatient to leavehome, and still feel tied to your family by loyalty,love, and responsibility.
You may recognize yourself in some of the situa-tions we described, or you may not. Everyone isunique, and even within the same family broth-ers and sisters experience life with MS in differ-ent ways. The point to remember is this: You areunique, but you are not alone.
WHAT YOU MAY NOT KNOW ABOUT MSSometimes just getting the facts about MS canmake things easier. For instance, difficulty withwalking and poor coordination are two obviousand common symptoms of MS. But many othercommon symptoms are invisible. They affect theperson’s behavior and emotional state. Knowingmore about them can explain why a person with
10 When a Parent Has MS: A Teenager’s Guide 11
worries or problems because you don’t want toburden him or her. It’s easiest to start a conver-sation at a time when your parent is comfortableand not too tired and when you aren’t toostressed yourself. Choose a time—when you’renot arguing—and then plunge in. Tell your parenthow you feel and what you think. Ask for under-standing. Here are ways some teens have start-ed conversations:
Needing Space
Beth felt smothered by her mother’s constantrequests. She approached the situa-
tion this way: “I love you, Mom,and I worry about you andabout the future. I want to takecare of you, but I can’t be tiedto you all the time either. I need
my own space, my own life.”Beth then told her mother what she
could do to help, such as making and keepingher own medical appointments and hiring a“mother’s helper” a couple of days a week soBeth could be free to participate in schoolactivities.
Many of these symptoms can be triggered byheat. They go away after the person cools downbut they can turn picnics, ball games, or beachtrips into nightmares.
Many people with MS want to ignore these weirdsymptoms as much as they can, and often theywon’t say much about them. They may try todismiss them as Erin’s mother does. “I feel mymom should take care of getting to the doctorand taking medicine, instead of acting as if itisn’t important,” Erin said.
Speaking Up for Yourself
One of the best things teens can do for them-selves is to let others know what’s on their mindand what they need. But what should you sayand how should you begin? As Ashley said,“Everyone says, ‘Talk about it; don’t hold itinside.’ But sometimes it’s hard to get started.”
Here are some ideas for opening up conversa-tions with others:
Parent with MSThis may be the heaviest door to push open.You may be afraid to tell your parent about your
12 When a Parent Has MS: A Teenager’s Guide 13
Wanting Thanks
Richie felt his mother took all the work he didaround the house for granted and
was feeling resentful. He openedup a conversation this way:“Mom, I’m happy to do whatev-er I can to make life easier forall of us. But sometimes I think
you don’t appreciate how much Ido. It would make me feel so much
better if you said thank you.”
Getting Informed
Many teens feel left in the dark about theirparent’s condition. Myra wantedher father to be honest with herabout the progress of his MS.She said this to him: “Dad, Ilove you and I worry aboutyou. It would make me feel lessanxious if you talked to me aboutwhat the doctor said. I’m old enough to betrusted.”
Wanting an Apology
Rachel was upset at her mother’s frequent lash-ing out at her because of mood swings. She
said, “Mom, it makes me feel badwhen you say hurtful things tome and then don’t apologizelater. It’s okay to say ‘the MSmade me do it,’ and then say
‘I’m sorry.’ I’ll understand.”
Even if your first few remarks are awkward ordon’t convey exactly what you mean, they canstill open the way to future talks. If you can keepthe lines of communication open, you’ll eventual-ly be able to say something like these otherteens did.
Healthy ParentWhether your parents live together or apart,you’ll find times when you want to talk with theone who doesn’t have MS. Teens often wonderwhat’s on the mind of the well parent, especiallyif he or she is the “strong, silent type.” Theremay be a welcome surprise for both of you if yousay, “Let’s talk. I need to tell you how I seethings and I want to know what you think.”
14 When a Parent Has MS: A Teenager’s Guide 15
Of course, every par-ent is different. Some
are just hard to talkto. Others are allover you with,
“How do you feel?Why won’t you talk to
me more often?”
Whatever your parent’s style,your best bet is to be honest
about how you feel. If you’re upset at themoment, it’s okay to say, “I need to cool off. I’lltalk to you in an hour.” When you’re calmer andready to talk, just tell it straight. Of course, it’salso OK to tell your parent politely that you’drather not talk about something. You’re entitledto your privacy.
SiblingsTalking with sisters and brothers is important,too, but not always easy. Some brothers and sis-ters feel disloyal or guilty for talking about MSbehind their parents’ backs. Still, it can be veryhelpful to talk about the experiences you share.Even if you don’t have heart-to-heart chats,brothers and sisters can at least talk about prac-tical things, like how to divide up household
chores fairly. Discussing potential problemsbefore they boil over can prevent fights.
StrangersWhen strangers stare or make rude commentsabout your parent, you may wish you had asnappy comeback. Unfortunately, there isn’t oneright way to handle this. Some people may justbe deliberately cruel, in which case it’s better toignore them. Other times, they may be acting outof well-meaning ignorance. Your best bet is to sitdown as a family and decide how to handle this.It’s important to honor the feelings of your parentwith MS.
Jeff, with his mother’s okay, came up with thisreply: “Oh, don’t worry, she’s not drunk; she hasMS. Do you want to know more about it?”
16 When a Parent Has MS: A Teenager’s Guide 17
Other emotions, likefear, sadness, andshame also need tobe dealt with.Sort them out abit, and talk tosomeone about them.If talking to a parent ishard, perhaps anotheradult you like would be a goodlistener, such as a friend’s parent,youth group leader, family doctor, schoolcounselor, favorite teacher, clergyperson, grand-parent, aunt, uncle, or older cousin.
Coping StrategiesHere are some things teens have said improvedtheir moods and made them better able to dealwith the tough stuff:
Write it down. Keeping a journal—just foryou—can help you safely express all thosethoughts swirling around in your head. “Noone knows, but I write letters I never send,just to get my feelings out and to make mefeel less alone,” said Heidi.
Get physical. Physical activity is the surestway to burn off anger and frustration. Run
Taking Care of Yourself
Your parent’s MS has a big influence on yourlife, but the disease shouldn’t dominate it. Yourlife can be happier if you live it as fully as possi-ble. Here are some things that have worked forother kids.
Dealing with Strong EmotionsAnger is to be expected, and it shouldn’t be hid-den or denied. It is better to aim the anger at theMS and not at the person. In talking with the par-ent who has MS, it helps to explain howyou feel and why: “I getmad when I have to dohousework. MS reallymesses things up forme.” This kind of state-ment directs the angerwhere it belongs—at theillness—and not at theparent who happens tohave it. The oppositeapproach (“You were somean to make me do the laundry!”) doesn’t help.It attacks the parent personally, makes him orher feel angry or defensive, and can leave youfeeling guilty later.
18 When a Parent Has MS: A Teenager’s Guide 19
help. Or go to theWeb site:www.nationalmssociety.org andclick on Find YourChapter.
Get a job. A part-time or summer jobhelps kids feel lessdependent, especially if money is tight. But besure to balance work time against time forschool, home chores and social life.
Practical SolutionsThese ideas could make life more manageable.Some you can do on your own; others will needyour parent’s help.
Use technology. Cell phones, beepers, or“life net” call systems can give you some free-dom while giving your parent a way to contactyou in case of an emergency.
Schedule the chores. Set up a family calen-dar on the refrigerator so chores—and timesoff—are distributed fairly. Rotate the jobs thateveryone hates so no one is stuck with themall the time.
around the block, shoot some hoops, go for aswim, ride a bike, do yoga, play a team sport.
Get creative. Involving yourself in a creativeactivity puts your mind on other things. Painta picture, build something out of wood (ham-mering is especially good!), take photographs,write a song, take part in the school play.
Relax. Having down time helps a person feelrefreshed. Lie back and listen to music, catchsome rays, read a book just for fun, breatheslowly and deeply.
Have fun. Call a friend and talk about any-thing (except MS), playa video or com-puter game,watch a movie,go shopping,play with a dogor cat. Whatabout a hobby?
Volunteer. Helping others takes people’sminds off their own problems. The NationalMS Society has many opportunities for teenvolunteers, especially at the MS Walk and thesummer Bike Tours. Call the toll-free number1-800-FIGHT-MS and find out how you can
20 When a Parent Has MS: A Teenager’s Guide 21
If there’s no MSteen supportgroup near you,a school coun-selor may beable to locate asupport groupfor teens whose par-ents have some other type of chronic disease ordisability. While their experiences may not matchyours identically, you’ll have many commonissues to share.
You can also check out one of these on-line sup-port groups:
www.msworld.org/communications.htm.This is the official chat site for the Society. Itoffers special interest message boards and afree Email group for family members of aperson with MS to obtain e-pals.
www.teenhelp.org. This free site is a net-work made up of peer mentors who offer sup-port to teens on a variety of topics. Of particu-lar interest might be the forum, “Why me?”
Counseling If things are really tough at home there are pro-fessionals who can help. Your chapter of the
Ask for help. If your parent’s care needs areoverwhelming you or if you feel your parent isdepressed no matter what happens (depres-sion is linked to MS and may even be part ofthe illness) ask other family members forhelp. If you don’t have siblings or another par-ent at home, ask relatives, even if they liveout of town.
Getting SupportMany teenagers say that the best help they everfound was through support groups with otherteens whose parents have MS. “Inever knew that other kids hadthe same feelings about MSthat I did. I thought I wasthe only one,” saidRachel.
The Society hasoffices all around thecountry. Some haveteenage support groupsand some have peercounselors.
If you haven’t connected with a chapter nearyou, call 1-800-FIGHT-MS (1-800-344-4867).Your call will go straight to the nearest Societyoffice.
22 When a Parent Has MS: A Teenager’s Guide 23
the Good Stuff
Having a parent with MS isn’t all bad. Evenduring rough patches when difficulties seem toovershadow everything, kids gain skills andexperiences that their peers with healthy parentsdon’t have. Here are some of the good thingswe’ve heard about that have come from havinga parent with MS:
Gaining Competence
When teens cook, clean house, do groceryshopping, yard work, or laundry, or
handle power tools, they gain asense of competence that theirmore sheltered peers don’thave. “By the time I was 12,my cooking skills were leg-
endary among my relatives andmy parents’ friends,” said Larry.
Now as an adult, his wife particularly appreciateshis cooking skill. And, he added, “Some of thebest memories I have are of cooking with mymother.”
National MS Society will have a list of coun-selors or social workers in your area who haveexperience with MS. Be aware that a fee is usu-ally involved for professional counseling. Ifmoney is tight, or if you don’t want to enlist yourparent in getting help, say so when you talk tothe chapter. (See above for contact info.)
Looking Toward the FutureAs senior year of high school approaches, someteens believe that they will have to shelve plansfor college. They assume it will cost too much ontop of medical and other family expenses or they
may feel that they shouldnot plan to attend aschool away fromhome. But this maynot be the case at all.
Talk with your parentsand your school coun-selor. If college wouldhave been in your
plans without MS, you owe it toyourself to find out about college scho-
larships, loans, service programs, and otheralternatives. MS shouldn’t hold you back.
24 When a Parent Has MS: A Teenager’s Guide 25
Feeling Important
Having responsibilities also helpsteens gain a sense of impor-tance to their family. They feeltrusted, and that can makethem feel more mature than
their friends.
Helping Others
Seeing a parent endure MS can also give kids astrong motivation to help others. “Rather than
letting my mother’s MS rule my life,I found a way to make a differ-
ence,” said Jennifer, who start-ed a newsletter for childrenwho have a parent with MS. “Iwanted to help little kids feel
hopeful, not hopeless.”
Volunteering doesn’t just benefit others. Miriam,who volunteered for the MS 150 Bike Tour at theMid-Florida Chapter, said, “I have become astronger leader from working with others.”
Many children of people with MS go into healthcare, become teachers, researchers, or do socialwork—all highly valued careers that make livesbetter for others.
Respecting Differences
At a time when the pressure tofit in and be like everyone elseis so strong, having a parentwith MS helps many teen-agers feel okay about being
different.
Closeness with Family
Perhaps one of the best things about having aparent with MS is the closeness teens feel with
their families. Often families pulltogether and help each otherout. “I admire our family for howwe handle things,” said Jeff.
“A lot of my friends comehome to an empty house after
school,” said Ashley. “I’m glad thatmy mom’s there when I get home. I’ve alwaysgot lots to tell her about my day. Plus, she’sgood at helping me with problems.”
Your parent’s MS has a big influence on yourlife, but the disease shouldn’t rule it. By speakingup for yourself, taking care of your needs, andenjoying all the good things about your family,you can have a happy, full life.
26 When a Parent Has MS: A Teenager’s Guide 27
To learn more about MS
Log on to our Web site atwww.nationalmssociety.org.
You can find out about:
Breaking news in the MS world
Symptoms, treatments, and research on MS
Educational programs, both live and on theWeb
Special events for teens and families in yourarea
Volunteering opportunities near you
Web casts where experts talk aboutspecific MS problems
Teen InsideMS, our online magazine writtenby and for teens
