To Tell or Not To Tell....

To tell or not to tell is a question faced by everyone with MS. The question is really many questions: Whom to tell? When to tell? How to tell? Even where to tell? Do you tell someone you've just started to date? Do you tell your employer? Do you tell when you get your diagnosis or when your illness will make you miss a day or a week or a month at work? How do you know what to tell? And is it even better not to tell at all?

Before we can answer about MS, we need to reflect on why we reveal ourselves at all and why we don't. The need to be known, to be liked and loved for who we really are, is a universal need that is often not met. We treasure those moments when we can be truly ourselves, say what we feel, not play a role, be unguarded. This openness is frequently lacking even between husband and wife, parent and child: the relationships where the need to be known and loved is most intense.

Disclosure to Friends and Family
Kevin J.* is a quiet man who has known he has MS for six years. He hasn't told anyone:
I went to a doctor because I had a serious fall. He decided to run some tests and a week later he told me that I have MS. No one can tell when they look at me. I've learned how to cover losing my balance. I'm only thirty-two. I'm not going to tell anyone because they might think I can't do my job. I'm sure not going to tell any woman I want to date. What's she going to think--I'm a cripple?

It is difficult to feel secure, attractive, or desirable when you get tired too frequently, tend to stumble, or can't see clearly. The tendency is to cover up, or to be silent.

Rhona M. belongs to a sorority at a small college in Massachusetts. She, too, dreaded the consequences of disclosure:
I didn't want to be seen as handicapped or weird. I didn't want to be different. But I had to stop going to parties and stuff and some of my sorority sisters got hurt and angry. Then they started ignoring me. I almost dropped out of school. Finally, three of them confronted me and said, "Rhona, what the hell is going on?" It was such a relief to get it all out finally. They've been so cool. I should have told them long ago.

Many people with MS are like Kevin and Rhona-reluctant to admit their illness to friends for fear of being "different", "misunderstood", "a burden", "an object of pity".

Such fears are well grounded in a society that prizes health and is often not tolerant of difference and imperfection. But in disguising the truth of their condition, people like Kevin don't allow their friends to know them or to give support. They cut themselves off from activities for fear they will reveal their problems. Or, pressured by the need to conceal the truth, they may even hurt themselves by pushing to do more than they should.

Andrea is a young editor at a publishing firm in New York City. Three years ago, she moved from a small town in Indiana to take this job. Her parents were terribly anxious about her move:
They did everything to discourage me short of begging me not to go. Whenever there was a crime in New York on the national news, I knew that I'd be getting a call from my mother. If she was overprotective about where I lived and worked, you can imagine how afraid I was that she wouldn't be able to handle the news that I had been diagnosed with MS.

I finally told her about my diagnosis six weeks ago and I haven't had any peace since. My mother can barely talk to me without her voice choking.

Andrea's experience is one that we all fear. But most people learn how to handle family members' initial reactions and even use the opportunity to develop better relationships. Less often, it becomes clear that further disclosure is not possible with some people.

Telling one's children is a particularly intense problem for parents, especially parents of young children. The thought of causing them insecurity and sadness through revealing an illness is agonizing. Our experience counseling families is that even four- and five-year-olds can be told in a way that doesn't terrify them. Sometimes they are actually relieved because the truth may not be as terrible as what they have imagined.

Mary remembers this conversation with her eleven-year-old son, Matthew.

He had not talked about my illness since he had been told about the diagnosis. Then one day he came into my bedroom and said, "I just want to know one thing. Are you going to die?" I assured him that I was not. Ever since, he asks questions about my MS with apparent ease. That question seemed to break a barrier within himself and between the two of us.

Disclosure and romance
Nowhere are we more likely to be vulnerable than when we are beginning to be in love, so it's not surprising that "if to tell" and "when to tell" the person to whom we are attracted generate so much anxiety. Having friends who know about your MS can be essential. In addition, a support group of people who share similar concerns, or NMSS peer counselors can provide relief, understanding, and direction.

Timing is critical. Telling every person you date could be a bore, but not telling when the relationship progresses is unfair to both persons. We suggest this rule of thumb: tell not too soon as to be unnecessary; not too late as to be a threat to trust.

How to tell. Blurting out, "I have multiple sclerosis," communicates poorly, possibly even falsely. The person you tell needs information, not a label that provokes frightening images. What form of MS do you have? What are its symptoms? How are you affected daily? What can and can't you do? You will need to tailor your information to fit the person you are telling: your child, your neighbor, your oldest friend.

Talking about any sensitive personal subject requires skill--skill that comes with effort and practice--skill you may need help to learn. We recommend writing down what you want to convey 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 and feel more confident, you will be more able to speak candidly and without apology.

It helps to remember that it will take time for the person you tell to absorb what you have said. Think how long it has taken you to accept your illness. With your disclosure, you have begun a discussion, and more communication will be required as time passes.

Disclosure at work
Telling family, friends, even someone you are beginning to love, involves telling people you know and trust and who (you hope) care for you. The emotional climate of the workplace is different. There you confront the question of disclosure in the context of concern about your present and future livelihood. Yet, even at work, the degree to which you feel safe, comfortable, and trusting will help guide your decision about if, how, and when you will tell. Preparation as described above will be needed-and more.

When to tell on the job. If your MS has not created any limitations for you, you may decide to say nothing. But if you feel disclosure will not be used against you, and that telling your boss and your co-workers provides more relief and is better for you than remaining silent, then you should tell.

If your job performance is threatened by your symptoms-for example, if you need time for a nap to combat fatigue, or a workspace near the bathroom because of bladder dysfunction, then you need to seek an accommodation. These are workplace adjustments that compensate for limitations and they are provided by the Americans with Disabilities Act, a Federal law, so long as they don't present an undue hardship for the employer.

ADA protections apply only when the employee discloses disability-related problems on the job, so a person who is hampered by MS symptoms has no choice but to tell. It is up to you, the employee, to find out who to meet with for this discussion and it is up to you to request a meeting. Employers with fewer than fifteen employees are not covered by ADA. Employees of the Federal government are covered by the Rehabilitation Act of 1973.

Before your meeting...We think it is essential to get technical advice before you tell your employer-facts about ADA provisions and advice about the kinds of accommodations that have worked well for other people. Your National MS Society chapter is your ally in this planning. We also think you'll need some psyching up--just as you do for telling other people in you life.

During your meeting...Be specific, brief, and non-apologetic. Stay focused on your employer's need to know about your ability to do your job. But as with telling anyone else, rehearse what you are going to say. Role-play with someone from the business world. Then speak confidently and positively of your ability, experience, and desire to do your job.

What to tell in a job interview. Unless you are visibly disabled, we advise (short of lying) not disclosing MS in a job interview. You are not required to do it legally. Moreover, your interviewer does not yet know what you can do and who you are. Trust has not been established. Many people with MS feel irrational guilt, which can prompt premature disclosure. But nearly everyone interviewing for a job has something they would prefer not to tell: their blood pressure, their drinking habits, or their family problems.

The issue in an interview is the coordination of an individual's abilities with a job's requirements. Even if you need an accommodation to meet those requirements, keep your focus on your experience and qualifications.

The pressure to quit working. Through an employment retention project, Gary Sumner, former manager of Employment Projects for the National MS Society, found how quickly MS affects employment.

"As soon as people are diagnosed, friends, co-workers, family, even their doctors tell them: 'You have MS. You're not going to be able to continue working,'" he said. "They'll hear, 'Get on Social Security Disability, you'll get a monthly paycheck, you'll get on Medicare, you'll be fine.'"

In Mr. Summer's opinion, that's simply not the case.

"Not only can people with MS continue to work, but in most cases it's in their best interests to do so. Not only for the present but for the future, they are better off psychologically as well as physically, if they stay on the job.

"Don't quit your job out of fear that problems might occur later," he emphasized. "We advise people to assess their own situation-their job demands, limitations, and current performance barriers--before taking action."

Going on
It is possible that you will experience prejudice, ignorance, even rejection, because of MS. On the job, knowing your rights should help you to protect yourself. In general, knowing yourself should help you to maintain your self-esteem and your openness to warmth, goodness, and intimacy from other people.

"It is, however, wise to remember that invisible MS can become visible." Mr. Sumner said. "Even the person with symptoms that are completely hidden worries about what might happen with another attack, about symptoms worsening--and these things affect every aspect of life, including job performance.

"When employers suspect something's wrong, they often think it is a drinking or drug problem accounting for a decrease in job performance. Or they suspect family problems," Gary Sumner explained. "When either the employee or employer has job-related concerns, effective communication is ideal."

Just as having at least one friend or family member who knows what you're going through can ease the burden of MS, having a co-worker as a confidant can often perform the same function on the job. A good confidant can help a person decide how much to tell other people. The whole world doesn't need to know. Moreover, there's a time and a way to tell. With a good confidant providing reality checks, the person with MS can control who is told what, and when.