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Secrets and Health: Keeping Illness Hidden

Why We Don’t Talk About Our Illness and How We Can

Ruth Livingston, Ph.D.

Who’s got a secret? We all do I’m willing to bet more than one. Secrets are just part of life. And, among the secrets that some of us keep, are details about our health. Why is this, and what are the pros and cons of such hiding?

When author and screen-writer/director Nora Ephron died of leukemia in June, many of her fans were shaken; we didn’t even know she was sick. Maybe, we thought, she just didn’t want the public to know that she was so direly ill. But, it turns out, even some of those closest to her were likewise in the dark. Ephron, who once wrote, “there are no secrets” (About My Neck) went about her business up until the final hospitalization when then, only her immediate family and the most intimate friends knew she was dying.

In a moving New York Magazine meditation and tribute to Ephron (Frank Rich in NYMagazine), Frank Rich quotes Meryl Streep from the memorial service:

“We’ve all been ambushed….she really did catch us napping…And it’s really stupid to be mad at someone who died, but somehow I’ve managed it.”

Streep went on to say that she was honored and privileged to be on the list of chosen speakers, despite feeling “pissed off.”

This is an example of how secrets about our health status can leave those who do not know the secret feeling blindsided when the truth is finally out. Although we don’t know exactly why Ephron was so protective, we can speculate that it had something to do with controlling her own life—and death—without the interference of others’ concern

Of course, we all know that privacy about one’s health is protected under federal regulation; we “own” our health status, and have the right to decide who else knows about it. But sometimes, as noted in a recent New York Times article “Keeping Parkinson’s Disease a Secret,” (Parkinson's a Secret) sharing or not sharing one’s medical condition with others can have significant ramifications for us, as well as for those we choose not to tell.

There are a number of reasons people prefer to keep their medical diagnoses to themselves:

Fear of Stigma:

Ah, the culture. How will others’ perceive my illness? Will people speculate on how I might have “caused” it, perhaps due to stress or lifestyle? Will their ideas of who I am change? Will my illness be held against me in professional or social settings? Will I be denied the job I want because I have an illness? Will I be rejected romantically, sexually? These are big questions.

Fear of Pity:

Balzac (circa 1825) wrote: “…pity kills the spirit, it intensifies our weaknesses, it cripples us.” Yes, when you’re ill you want and need to be emotionally buoyed. But, pity does not do that: instead, it presumes a hierarchy, with one person (the pitied) in the lowly, humbled, position, and the other (the person who pities) elevated, on top. All the complexities of the individual spirits, strengths and flaws are obscured as that ill person becomes the disease or condition, rather than the person he or she was before the diagnosis.

Fear of burdening others:

Well, yes. Often, we don’t want to bring our illness to others, especially those we care about. A mother keeps her cancer diagnosis from her children in order to safeguard them from the anxiety her health status is bound to create. A young woman, whose recent role with her best friend is to console her as the friend shares the details of a dissolving relationship, decides she cannot add another layer to the pain of her pal. An adult child insists he must hide his Multiple Sclerosis diagnosis from his elderly parents because “that would kill them, for sure.”

Such reasons for keeping tight-lipped about one’s illness are all defendable. Yet, like most secrets, these reasons all have downsides.

For example, our concern about stigma may really be about feeling ashamed. Rather than the outside world causing the stigma, we’re the ones judging ourselves about being sick. Perhaps we are guilty about lifestyle issues that possibly contributed. Or perhaps we carry our own biases about the medically or physically ill. Shame can inadvertently prevent us from getting critical support.

Likewise, when it comes to pity, there’s a fine line. If we’re worried that others will treat us with pity and so refuse to share our condition it may mean that we’ll fail to receive the emotional buttressing we need.

Finally, concern for others, while perhaps noble in its conception, may deprive those we care about from sharing in our experience. As Meryl Streep reflected, such a secret can leave the one not told the secret feeling angry and “ambushed.” Not disclosing, when it’s clear something is amiss because of symptoms or absences, can raise acute anxiety in those who have not been informed of the cause.

So, what’s the answer; what’s the recommendation?

Well, it all depends. No one is—or should be—required to divulge his or her medical condition – to family (even immediate), friends (even close), or to colleagues.

We need to balance the pros and cons, considering our illness and the people we’re concerned about telling. Here are some suggestions:

■Separate stigma from shame. Ask yourself whom you are protecting and why. Are you worried about your job? Even if you are, perhaps it’s a good time to find a way to tell your boss.

■Think about each individual. Maybe there are some people you can tell, and others you can’t. Sort them. There are those who can’t handle illness, and those who know exactly what to do to be supportive and keep your secret.

■Don’t assume that you’re burdening others; you may be depriving friends and family of an intimate relationship with you, and you may deprive yourself of support.

■If you decide to tell, keep it simple. Know your illness; if someone asks questions, you will be prepared to answer. Unless you are in a safe/intimate situation or environment, it’s probably a good idea to keep your emotions in check.

■Model how you wish to be treated. If, for example, you demonstrate strength, others will respond accordingly. If you want support, be direct in requesting it.

■Most of all, make your own decision about whom to tell. Do not be swayed by other’s opinions or recommendations. Ultimately, you have the call.

Think of Nora Ephron. She decided exactly whom to tell and when. In the end, even those who felt left out by her secret agreed it was exactly “right” for her. Despite our personal feelings, no one can fault her for that.

After all, a secret is a secret.

Ruth H. Livingston is the Director of Living with Medical Conditions, a referral service through the William Alanson White Institute, NYC, where she also maintains a private practice specializing in working with persons with acute and chronic medical conditions. In addition, Dr. Livingston is the co-Editor-in-Chief of the professional journal, Contemporary Psychoanalysis.

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