Disclosure: The Basic Facts 1 of 2

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

Nowhere are we more vulnerable than when we are beginning to fall in love. It’s not surprising that “if to tell” and “when to tell” the person to whom we are attracted cause so much anxiety. Having good friends who know about your MS can be essential. A support group of people who share similar concerns, or National MS Society peer counselors can provide relief, understanding, and direction.

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.

National Multiple Sclerosis Society of the USA