Disclosure: The Basic Facts
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? 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 makes you miss a week or a month at work? How do you know what to tell? And is it ever better not to tell at all?
Before focusing on MS, it’s good 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. It is also a need that is often not met. We treasure those moments when we can truly be ourselves, say what we feel, not play a role, and be unguarded. This openness is frequently lacking even between husband and wife or parent and child—the relationships where the need to be known is the most intense.
“Don’t let me be misunderstood”
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?
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, and thought of as a burden or an object of pity.
Such fears are well grounded. Our society prizes health and is often not tolerant of difference and imperfection. But in disguising the truth of their condition, people like Kevin and Rhona don’t allow their friends to know them or to give them support. They 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 to do more than they should.
Disclosure and family
Andrea is a young editor at a publishing firm in New York City. Three years ago, she moved from a small town 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 over-protective 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 simply not possible with some people.
Telling one’s children can be a challenge, especially for parents of young children. The thought of causing them insecurity and sadness is agonizing. Our experience in 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 is not as terrible as what they have imagined.
Keep S’myelin, a colorful, award-winning newsletter for children published by the Society, is filled with stories, interviews, games, and activities that highlight a variety of topics about MS. Each issue has a pull-out section for parents. Contact your chapter for more information.
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 him and between the two of us.
Disclosure and romance
When romance is developing, timing is critical. Telling every person you date would be a bore, but not telling when the relationship progresses toward intimacy is unfair. We suggest this rule: tell not too soon as to be unnecessary and not too late as to be a threat to the trust that is developing between you.
How to tell
Talking about any sensitive personal subject requires skill—skill that comes with effort and practice. We recom-mend 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 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
When to tell on the job
Full or partial disclosure?
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 ...
During your meeting ...
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
“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 prob-lems 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
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.
Supporting literature from the Society
Photos: The Lougee family. Photographs by John Noltner.
Copyright © National Multiple Sclerosis Society, 2004