To Tell or Not To Tell…?

Do I Tell Anyone I Have Cancer…?

Whether to share the news you have cancer with others can be a very personal decision. You’re probably not sure what to do or how much to reveal.

Some people with cancer choose to tell their loved ones only; others find that it helps to let people they come in regular contact with, know about their diagnosis. When people decide to tell others, they may do so for these reasons:

  • It’s too big and scary to deal with alone.
  • It lets other people give support.
  • It gives family and good friends a chance to say how they feel.

People who decide NOT TO SHARE their diagnosis have given these reasons for not doing so:

  • They’re not ready to talk about it.
  • They’re afraid that other people will be scared.
  • They think other people may not want to be around them.
  • Saying the words out loud makes the cancer more “real.”
  • They don’t want others to feel sorry for them or change how they treat them.
  • They don’t want to feel responsible for the financial stress that might result from the required treatments and might feel guilty to bring this to their families.
  • Main reason was to protect them worrying or disrupting their everyday life.
  • Others said they didn’t want sympathy or ‘special’ treatment due to illness.
  • Women were more likely to be secretive, with 25% considering not telling and 18% of men said they would do the same, in a recent study.

Sometimes, people do not talk about their cancer because they have not made sense of it themselves. Maybe they caught it at an early stage that it would be easy to take care of and want to avoid the attention. Doctors, nurses, and other healthcare professionals in the cancer space, have a responsibility to be deliberate in asking patients how they will explain their cancer to others, to make sure they understand. Keeping such a diagnosis hushed, a secret from those who love and care for us, is an unfair burden on ourselves that we shouldn’t allow cancer to dictate, too. However, there are some cultural stigmas, personal pride or other fears that foster the secret, similar to the list above. Some do not want to be defined by the diagnosis and have a horror of pity. They do not lie to anyone but rely on being pretty vague about some things in order to maintain their privacy. If everything is being taken care of, and positive progress continues to come out of the situation, it might be okay.

However, what happens when there is a turn of events and the prognosis becomes more uncertain? When do you tell others that you have been keeping this private situation, well… private? Patients might not want friends and family to be hurt or upset when they find out that they were not aware of the situation. But, at the same time, it might never be necessary to tell them at all. Some undue stress might surface as one might feel really torn and feel like they have backed themselves into a corner, although they cannot imagine having done it any differently. Most of the time, while the people who do know respect the wishes of privacy and are very protective, they mostly do not all agree with the decision to keep the information to yourself in the first place.

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So, what is the best way to proceed? Continue as you are for a bit until you see what happens, or should you start to clue more people in? You might be rightfully afraid of being cornered with personal conversations while at work and other social circles, or afraid that if you tell anyone it will be common knowledge in no time and that can freak you out. Your instinct might be to just keep on as you are, but if you are not totally clear mentally on the subject and really do not want anyone to be upset, you might be in a challenging dilemma, on top of dealing with your cancer diagnosis.

Here is one take: This is your illness and I can understand why you don’t want it to become community property, something that makes you “That Poor Guy or Lady with Cancer”. You’re absolutely right that some people are going to see you differently if they know you have cancer and get self-consciously pitying or solicitous around you. These people — and I’m one of them, so I should say “us people” — mean well. But cancer freaks us out. It’s this Sword of Damocles that hangs over all of us and when we find out someone has it our own fears and guilt go into overdrive. And thus we tend to direct various histrionic forms of sympathy toward “That Poor Guy or Lady with Cancer”. This only amplifies the sense that they are living outside the smug circle of the healthy. Thus the illness, which is already attacking your body, becomes a source of stigma as well. It sucks, and you are trying to avoid it. I get it.

So the short answer is: you should only tell the people YOU want to tell. You are the one with cancer. It is your business and the business of those YOU entrust to support you at this time. Period. You don’t owe anyone a medical status report, especially if you sense that providing one is going to sap your energy, or try your patience. I have spent enough time around people with cancer to know that their energies are better spent on matters more pressing than social niceties.

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All that being said, when the situation take a turn for the worse or complication surface with the unwelcome possibility that the effects of your disease may soon become more apparent to the world at large, one will then be left having to explain to certain people why we did not tell them sooner. They will be upset, or feel betrayed. And here is what I have to say about that: I am very sorry, but tough luck for them. To reiterate: you are the one with the life-threatening disease. This doesn’t mean you get to treat people like garbage. But it does mean that you can let yourself off the hook for misdemeanors, particularly ones committed on behalf of your own wellness. If it comes down to it, you can simply explain to people the truth behind your decision to keep this private: that you didn’t want to be defined by your condition, or pitied, or stigmatized. I am sure that, once they get past the shock of finding out about your situation, most would understand and respect your decision.

Part of our reluctance to tell folks is about protecting ourselves. Protecting both our peace of mind and our own identity. If you are a known figure in your community, interacting with people who do not know you are sick must provide a great deal of comfort. It is a way of keeping the secret from yourself, if you know what I mean. Or maybe it would be more accurate to say that by keeping news of the disease under wraps you are both limiting its “spread” and preserving the psychic possibility that it will simply go away. Some talk about having a “horror of pity” which I completely get. Powerful, independent people tend to abhor pity because it is condescending; it represents a posture of assumed vulnerability. And none of us like feeling vulnerable, especially when our bodies are under siege.

In the end, we are all vulnerable. The saddest part of the human arrangement is that disease and decay, and finally death, comes for all of us. And when it does, the biggest loss of all is that we do not get to love anymore. So by all means avoid the leering pity of the masses. But please (please, please) don’t shut out those who have genuine sympathy and love to bestow onto you. Don’t deprive yourself of the support you need in these coming months and years. About the only good that can come out of a diagnosis like yours — aside from a full recovery — is the chance to see anew the splendor of your life, the many people who love and admire you and wish to be able to express those emotions as you face this challenge. Letting them love you is a huge act of vulnerability. But it’s also the whole point of being alive.

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