Multiple Sclerosis 12.3.9 Brochure Disclosure

7/27/2019 Multiple Sclerosis 12.3.9 Brochure Disclosure

1/6

Disclosure e Basic Facts

To tell or not to tell is a question faced by everyone with MS. e question is really many questions: Whom to tell? When totell? How to tell? Do you tell someoneyouve just started to date? Do you tell youremployer? Do you tell when you get yourdiagnosis or when your illness makes youmiss a week or a month at work? How doyou know what to tell? And is it ever betternot to tell at all?

Before focusing on MS, its good to reecton why we reveal ourselves at all and why

we dont. e need to be known, to beliked and loved for who we really are, isa universal need. It is also a need that isoften not met . We treasure those moments

when we can truly be ourselves, say what we feel, not play a role, and be unguarded.

is openness is frequently lacking evenbetween husband and wife or parent andchildthe relationships where the need tobe known is the most intense.

DON T LET ME BEMISUNDERSTOOD

Kevin J. is a quiet man who has known hehas MS for six years. He hasnt told anyone:

I went to a doctor because I had a seriousfall. He decided to run some tests and a

week later he told me that I have MS. Noone can tell when they look at me. Ivelearned how to cover losing my balance.Im only thirty-two. Im not going to tellanyone because they might think I cantdo my job. Im sure not going to tell any

woman I want to date. Whats she going tothinkIm a cripple?

Rhona M. belongs to a sorority at a smallcollege in Massachusetts. She, too, dreadedthe consequences of disclosure:

I didnt want to be seen as handicappedor weird. I didnt want to be diff erent.

But I had to stop going to parties andstuff and some of my sorority sisters gothurt and angry. en they started ignoring me. I almost dropped out of school.Finally, three of them confronted me andsaid, Rhona, what the hell is going on?It was such a relief to get it all out nally.

eyve been so cool. I should have toldthem long ago.

Many people with MSare like Kevinand Rhonareluctant to admittheir illness tofriends for fear of being diff erent,


2/6

2 DISCLOSURE

misunderstood, and thought of as a burdenor an object of pity.

Such fears are well grounded. Our society prizes health and is often not tolerantof diff erence and imperfection. But indisguising the truth of their condition,people like Kevin and Rhona dont allow their friends to know them or to givethem support. ey cut themselves off from activities to hide their problems. Or,pressured by the need to conceal the truth,they may even hurt themselves by trying todo more than they should.

DISCLOSURE AND FAMILY

Andrea is a young editor at a publishing rm in New York City. ree years ago, shemoved from a small town to take this job.Her parents were terribly anxious about hermove:

ey did everything to discourage meshort of begging me not to go. Wheneverthere was a crime in New York onthe national news, I knew that Id begetting a call from my mother. If she wasoverprotective about where I lived and

worked, you can imagine how afraid I wasthat she wouldnt be able to handle thenews that I had been diagnosed with MS.

I nally told her about my diagnosis six weeks ago and I havent had any peacesince. My mother can barely talk to me

without her voice choking.

Andreas experience is one that we all fear.But most people learn how to handlefamily members initial reactions and evenuse the opportunity to develop betterrelationships. Less often, it becomes clear

that further disclosure is simply not possible with some people.

Telling ones children can be a challenge,especially for parents of young children.

e thought of causing them insecurity and sadness is agonizing. Our experiencein counseling families is that even four-and ve-year-olds can be told in a way that

doesnt terrify them. Sometimes they areactually relieved because the truth is not asterrible as what they have imagined.

Keep Smyelin, a colorful, award-winning newsletter for children published by theSociety, is lled with stories, interviews,games, and activities that highlight a variety of topics about MS. Each issue has

a pull-out section for parents. Contact yourchapter for more information.

Mary remembers this conversation with hereleven-year-old son, Matthew:

He had not talked about my illness sincehe had been told about the diagnosis. enone day he came into my bedroom andsaid, I just want to know one thing. Areyou going to die? I assured him that I wasnot. Ever since, he asks questions aboutmy MS with apparent ease. at questionseemed to break a barrier within him andbetween the two of us.


3/6

DISCLOSURE

DISCLOSURE AND ROMANCE

Nowhere are we more vulnerable than when we are beginning to fall in love. Itsnot surprising that deciding if and whento tell the person to whom we are attractedcauses so much anxiety. Having goodfriends who know about your MS can beessential. A support group of people whoshare similar concerns, or National MSSociety peer counselors can provide relief,understanding, and direction.

When romance is developing, timing iscritical. Telling every person you date

would be a bore, but not telling when therelationship progresses toward intimacy isunfair. We suggest this rule: tell not toosoon as to be unnecessary and not toolate as to be a threat to the trust that isdeveloping between you.

HOW TO TELL

e person you tell needsinformation , nota label that provokes frightening images.

What form of MS do you have? What arethe symptoms right now? How are youa ff ected daily? What can and cant youdo? You will need to tailor the informationyou give to t the person you are telling,

whether it is your child, your neighbor, or

your oldest friend.Talking about any sensitive personal subjectrequires skillskill that comes with eff ortand practice. We recommend writing down

what you want to get across and doing some role-playing with someone you trust.

Sometimes this sharing and role-playing can be done in self-help or support groups,or with a counselor who has MS experience.

When you have practiced, your condence will increase and youll be more able to

speak openly and without apology.It helps to remember that it will take timefor the person you tell to absorb what youhave said. ink how long it has taken youto accept your illness. With your disclosure,you have begun a discussion with thatperson, and more communication will berequired as time passes.

DISCLOSURE AT WORK

Telling family, friends, even someone youare beginning to fall in love with, involvestelling people you know and trust and who(you hope) care for you. e emotionalclimate of the workplace is diff erent. ereyou confront the question of disclosure in

the context of concern about your presentand future livelihood. Yet, even at work, thedegree to which you feel comfortable willhelp guide your decision about if, how, and

when you will tell. Preparation as describedabove will be neededand more.

WHEN TO TELL ON THE JOB

If your MS has not created any limitationsfor you, you may decide to say nothing. Butif you feel condent that disclosure will notbe used against you, and that telling yourboss and coworkers would be better for youthan remaining silent, then you should tell.


4/6

4 DISCLOSURE

FULL OR PARTIAL DISCLOSURE?

You should weigh carefully what yourdisclosure will be. An employee (or jobapplicant) doesnot have to give a diagnosis.It is legitimate to describe your problems asdue to a medical condition.

If your job performance is threatenedby your symptomsfor example, if you need time for a nap, or a workspacenear the bathroomthen you need toseek anaccommodation . ese are

workplace adjustments that compensatefor limitations. For most employees, they are guaranteed by the Americans withDisabilities Act (or ADA) a federal law, solong as the accommodations dont presentan undue hardship for the employer.

ADA protections apply only when theemployee discloses disability-relatedproblems on the job. With or withoutfull disclosure, the employee has todiscuss the problems, in order to obtainaccommodations. It is up to you, theemployee, to nd out whom to meet withfor this discussion and to request a meeting.It is up to you to suggest the possiblesolutions as well.

Employers with fewer than fteenemployees are not covered by ADA.Employees of the federal government arecovered by the Rehabilitation Act of 1973.Employees of state or local governmentsare covered by ADA but may not sue formonetary damages or lawyers fees.

BEFORE YOUR MEETING ...

We think it is essential to get technicaladvice before you tell an employer. ereis much at stake. You need facts about

ADA and advice about the kinds of accommodations that have worked well forother people with similar problems. We alsothink youll need some psyching upjustas you do for telling people in your personallife. Your nearest National MS Society office wants to be your ally in this process.

DURING YOUR MEETING ...

Be specic, brief, and non-apologetic.Stay focused on your employers need toknow about your ability to do your job.But as with telling anyone else, rehearse

what you are going to say. Role-play withsomeone from the business world. enspeak condently and positively of yourability, experience, and desire to do your

job. You may want to off er copies of Society literature about MS. See page 6 for a list.

WHAT TO TELL IN A JOBINTERVIEW

Even if you are visibly disabled, we advisenot disclosing MS in a job interview.Legally, you are not required to do so.

Your interviewer may not ask you why youneed your mobility device. Moreover, yourinterviewer does not yet know what youcan do and who you are. Trust has not beenestablished. Many people with MS feelirrational guilt and this can prompt them


5/6

DISCLOSURE

to give too much information too soon. Butnearly everyone interviewing for a job hassomething they would prefer not to tell:their blood pressure, their family problems,their credit card balance.

e issue in an interview is the matchbetween an individuals abilities,training, and experience and a given

jobs requirements. Even if you need anaccommodation to meet some of thoserequirements, keep your focus on yourexperience and qualications.

THE PRESSURE TO QUITWORKING

Dr. Beverly Noyes, Associate VP of Programs and Sta ff Development for theNational MS Society, reports that quitting

work is often the rst thing recommended when the diagnosis is MS.

Friends, family, even doctors will say, youhave MS; youre not going to be able tocontinue working; the stress will be toomuch for you, she said. Youll be advisedto get on Social Security Disability, get a monthly check and Medicare, and stop

worrying.

In Dr. Noyes experience, thats simply not the case:

Not only can people with MS continueto work, but in most cases its in theirbest interests to do so. For the present as

well as the future, people are better off

psychologically and physically, if they stay on the job, and learn to manage their stress.

Dont quit your job for fear of problemsthat might occur later, she emphasized.We advise people to wait out any immediate crisis, and then assess theirsituationtheir job demands, limitations,options, and current performancebarriersbefore taking action.

It is, however, wise to remember thatinvisible MS may be more visible than youimagine, Dr. Noyes added. Anxietiesabout MS can a ff ect every aspect of life,including ones job performance.

When employers suspect somethings wrong, they often think it is drinking,drugs, or family troubles. In that case, opencommunication is preferred, Dr. Noyesexplained.

MS AND HEALTH INSURANCE

Once you have been hired at a new job,act quickly to take advantage of any grouphealth-care insurance off ered by yournew employer. It is important that youdo not lie on any health-care insuranceapplication form or try to intentionally hide the fact that you have MS. You mustrespond honestly and fully to any question.However, you do not have to volunteerany information that is not requested.

is information cannot be used by youremployer.


6/6

2004 National MS Society

national MSsociety.org

For Information: 1 800 FIGHT MS

(1 800 344 4867)

GOING ON

It is possible that you will experienceprejudice, ignorance, even rejection,because of MS. On the job, knowing yourrights should help you to protect yourself.

At home and elsewhere, knowing yourself should help you to maintain your self-esteem and your openness to warmth,goodness, and intimacy from other people.

Having at least one friend or family member who knows what youre going through can ease the burden. A goodcondant can help a person decide how much to tell other people. e whole

world doesnt need to know. Moreover,theres a time and a way to tell so theperson with MS can control who is told

what, and when.

SUPPORTING LITERATURE FROMTHE SOCIETY

What is Multiple Sclerosis? Information for Employers

Should I Work? Information forEmployees

e Win-Win Approach to Reasonable Accommodations: Enhancing Productivity on Your Job

ADA and People with MS

Ask your chapter for copies of thesebrochures.

The National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience and expertopinion, but do not represent individual therapeutic recommendation or prescription. For speci c information and advice, consult your personal physician.

Multiple Sclerosis 12.3.9 Brochure Disclosure

Documents

Transcript of Multiple Sclerosis 12.3.9 Brochure Disclosure