Disclosure: The Basic Facts 2 of 2

How to tell

The person you tell needs information, not a label that provokes frightening images. What form of MS do you have? What are the symptoms right now? How are you affected daily? What can and can’t you do? You will need to tailor the information you give to fit the person you are telling, whether it is your child, your neighbor, or your oldest friend.

Talking about any sensitive personal subject requires skill—skill that comes with effort and 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 counsellor who has MS experience. When you have practiced, your confidence will increase and you’ll be more able to speak openly 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 with that person, and more communication will be required as time passes.

Disclosure at work

Telling family, friends, even someone you are beginning to fall in love with, involves telling people you know and trust and who (you hope) care for you. The emotional climate of the work-place is different. There you confront the question of disclosure in the con-text of concern about your present and future livelihood. Yet, even at work, the degree to which you feel comfort-able 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 confident that disclosure will not be used against you, and that telling your boss and co-workers would be better for you than remaining silent, then you should tell.

Full or partial disclosure?

You should weigh carefully what your disclosure will be. An employee (or job applicant) does not have to give a diagnosis. It is legitimate to describe your problems as due to “a medical condition.”

If your job performance is threatened by your symptoms—for example, if you need time for a nap, or a work-space near the bathroom—then you need to seek an accommodation. These are workplace adjustments that compensate for limitations. For most employees, they are guaranteed by the Americans with Disabilities Act, or ADA, a federal law, so long as the accommodations don’t present an “undue hardship” for the employer.

ADA protections apply only when the employee discloses disability-related problems on the job. With or without full disclosure, the employee has to discuss the problems, in order to obtain accommodations. It is up to you, the employee, to find out whom to meet with for this discussion and to request a meeting. It is up to you to suggest the possible solutions as well.

Employers with fewer than fifteen employees are not covered by ADA. Employees of the federal government are covered by the Rehabilitation Act of 1973. Employees of state or local governments are covered by ADA but may not sue for monetary damages or lawyer’s fees.

Before your meeting ...

We think it is essential to get technical advice before you tell an employer. There is much at stake. You need facts about ADA and advice about the kinds of accommodations that have worked well for other people with similar problems. We also think you’ll need some psyching up—just as you do for telling people in your personal life. Your nearest National MS Society office wants to be your ally in this process.

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. You may want to offer copies of Society literature about MS. See below for a list.

Even if you are visibly disabled, we advise not disclosing MS in a job interview. Legally, you are not required to do so. Your interviewer may not ask you why you need your mobility device. 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 and this can prompt them to give too much information too soon. But nearly everyone interviewing for a job has something they would prefer not to tell: their blood pressure, their family problems, their credit card balance.

The issue in an interview is the match between an individual’s abilities, training, and experience and a given job’s requirements. Even if you need an accommodation to meet some of those requirements, keep your focus on your experience and qualifications.

The pressure to quit working

Dr. Beverly Noyes, director of Programs and Staff Development for the National MS Society, reports that quitting work is often the first thing recommended when the diagnosis is MS.

“Friends, family, even doctors will say, you have MS; you’re not going to be able to continue working; the stress will be too much for you,” she said. “You’ll be advised to get on Social Security Disability, get a monthly check and Medicare, and stop worrying.”

In Dr. Noyes’ experience, 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. 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.

“Don’t quit your job for fear of problems that might occur later,” she emphasized. “We advise people to wait out any immediate crisis, and then assess their situation—their job demands, limitations, options, and current performance barriers—before taking action.”

“It is, however, wise to remember that invisible MS may be more visible than you imagine,” Dr. Noyes added. “Anxieties about MS can affect every aspect of life, including one’s job performance.

“When employers suspect something’s wrong, they often think it is drinking, drugs, or family troubles. In that case, open communication is preferred,” Dr. Noyes explained.

MS and health insurance

Once you have been hired at a new job, act quickly to take advantage of any group health care insurance offered by your new employer. It is important that you do not lie on any health care insurance application form or try to intentionally hide the fact that you have MS. You must respond honestly and fully to any question. However, you do not have to volunteer any information that is not requested. This information cannot be used by your employer.

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. 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 you’re going through can ease the burden. 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 so the person with MS can control who is told what, and when.

National Multiple Sclerosis Society of the USA