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Summary

Whether you've just been diagnosed or have been living with a diagnosis for a while, there are no real guidelines about who to tell, when to tell them, and what to tell. The answers are completely personal. There is no obligation to tell anyone as long as your health condition is not communicable and you don't put anyone at risk.

The decision about telling is important because once you tell, there is no going back. Even swearing a person to secrecy doesn't assure that your story won't be spread beyond the listener.

When thinking about telling family and friends, keep in mind that bottling up your emotions can be injurious to your physical and mental health. Also, keeping a secret is stressful. The more important the secret, the more the stress.

Before you tell, think about:

  • Why.
  • Who you want to tell. It is advisable to tell people closest to you first. 
  • What you want to tell them.
  • The setting.
  • Possible reactions and how to respond to them. Expect that everyone will react differently. They need to come to terms with their own feelings  which may include confusion, shock, helplessness, or anger.

Consider rehearsing what you want to say with a person close to you - especially someone who knows the people about whom you are rehearsing. An alternative is to rehearse what to say with a health care professional, such as someone in your doctor's office. If you're not comfortable, consider having someone with you when you tell. 

You can avoid the discussion and give people a chance to adjust to the information before seeing them by asking a family member to share the news with other family and friends.

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How To Prepare Before You Tell

Don't have any preconceived notions of how any particular person will take the news. There is no way to predict how any person will receive the news.

  • Be prepared for all possible reactions, from what you hope the reaction will be, to what you expect it to be, to a disappointing or negative reaction. People have even known to be angry.
    • Lower your expectations. Keep them reasonable.
    • Be patient. It can take time to absorb the news.
    • Talk about your fears - and theirs. 
    • Think about who to turn to for support if you are unduly affected by the reaction.
  • Expect a flood of emotions from both of you. Be ready to help the person "come to grips with your news," however difficult that process might be.
  • Be prepared for people you talk to telling other people without your knowledge or approval.

When you think about what you want to say:

  • At least make it clear that you desire to be treated as a person living with a disease, not as a victim, and not as the disease. You are the same person you were. Your priorities may be shifting, but who you are has not shifted. (To learn more, see: You Are Not Your Condition.)
  • It may not seem fair to think that putting other people at ease about your health is part of your job, but it often is. Telling is likely to stir up the listener's own mortality issues.
  • Think about the information you've learned about your health condition in general, and where you are specifically, at least to the extent that the facts are known at the time you want to tell. You don't have to divulge the same amount of information to everyone. You can pick and choose who you tell what.

To help people understand, it is helpful to educate them. Instead of educating people yourself, you can:

  • Gather simple educational materials you can give people.
  • Identify a web site you find particularly easy to understand and navigate.
  • Think about what disease specific non-profit organization to refer people to.

Understand that your health condition can affect roles in the family. The caregiver may need care. The breadwinner may need other people to go to work or increase their work hours. Interactions are likely to change as roles change.

Don't expect your relationships with people to be normal for a while. It may be a while before they talk about their own problems again. The thought that they might lose you can be very difficult for some people to bear. Give people time to digest what you tell them and to adjust to the news.

If thinking about telling provokes heavy anxiety, keep in mind that you don't have to do the lifting yourself. You can:

  • Discuss these issues with a close friend or family member.
  • Have someone with you when you tell.
  • Ask a person close to you to tell other people about your condition.

The Pros And Cons Of Telling Family, Friends And Acquaintances

Why tell in general

There are many reasons to tell about your condition. The ones we know about follow, in no particular order:

  • Keeping secrets is stressful - the greater the secret the greater the stress. 
    • Fear of people finding out can haunt you. 
    • There can be a very heavy toll to pay when you have someone close to you, with whom you share life and emotions, who doesn’t know about your diagnosis. You will need to constantly stay on guard because every conversation could unintentionally reveal your secret.  
  • There is no reason to feel shame because you have an illness.
  • Your ability to control information is limited. 
    • Your ability to control information becomes more limited the more time goes on. 
    • Friends and family are likely to sense something is causing you anxiety and possibly changing your appearance, energy level etc. 
    • If you live with other people, it is close to impossible to keep your condition a secret when you get mail such as copies of insurance claims, when you have to take time to visit medical personnel, have and take pills, and change habits such as your diet.
  • To get emotional support.
  • To get information.
  • To stop the rumor mill.
  • Lying about things can get complicated. You have to remember lies, possibly back them up - and maybe even embellish them as time goes on.
  • Help reduce the loneliness that generally comes with a diagnosis.
  • Get a boost to your ego from people who see you as a fighter and survivor.
  • Avoid having people close to you feel hurt because they weren't told.

Why not tell?

  • The feeling that people will feel sorry for you (also known as the "pity reason.")
  • Fear of rejection.
  • Your relationship is likely to change, at least temporarily.
  • Word may get back to your employer or co-workers before you decide to disclose.
  • Questions may bring home how uncertain things may be at any given time.
  • Keeping the information to yourself can make you look "tough" in the eyes of some people who see toughness as a virtue.
  • With some conditions, such as HIV or lung cancer, there may be negative opinions. For example:
    • With HIV there may be an assumption about how you got it. There may also be a morality opinion about those activities. 
    • With lung cancer, there may be the reaction that you brought it on yourself by smoking. 

NOTE: It is advisable to keep in mind that even people you swear to secrecy are likely to tell other people about what is happening.

When To Tell

Tell when:

  • You're ready.
  • You need emotional support.
  • You are clear about why you want to tell that particular person at that particular time.
  • You feel comfortable enough with your condition to present the news effectively to others.
  • You're fairly certain the person is going to guess or find out anyway, and you want to have control over when and how they're told.
  • You are ill and you need the person to help take care of you.
  • You're feeling fine, but want to prepare the person in case you get sick in the future.
  • It will help you make the most of your life right now.
  • You need financial help or help getting to needed resources.
  • It will help you make important future plans for things like custody of your children, living wills and administration of your estate.

How To Handle Insensitive or Inappropriate Questions

Realize that another person's reaction likely has more to do with the illness and the shock rather than you. Many people are afraid of your illness and their own vulnerability. The news may trigger their own pain or fears of mortality.

Keep in mind that the person is not trying to be rude or inconsiderate. 

If the person is misinformed, educate them about your condition and prospects. Let them know that it is not a death sentence.

Encourage people to ask the questions that are on their minds. Don't be surprised if they have difficulty wording their questions.

The more you talk to other people about what you are going through, the more comfortable they will feel with you and their fears about their own mortality.


How To Tell

Ideally, choose an apporpriate setting and time.

  • Select an appropriate setting that is quiet and comfortable - and is separate fromthe distractions of day-to-day life.
  • Set aside a special time when both you and the other person or persons are not distracted and can focus. Make sure there is time for questions and for discussion. People need time to absorb the information.

Consider having someone else with you when you tell a particular person to support you and/or the other person - perhaps someone who know the person well, and understands your condition.

If you must tell the news on the telephone, select a time when the person is not distracted or rushed. You can ask if this is a good time - or set a later time if it is not.

Start the conversation by warning the person that you have bad or serious news. Then quickly and briefly explain the situation.

Watch for a person's signals about how much he or she wants to know. For instance, if he or she asks questions. It may be that there will be a need for several conversations.

NOTE: If the news can be particularly devastating for the person, such as person with a weak heart or a nervous condition, consider speaking with a health professional or a clergy person for guidance before telling.

What To Say

What to say generally depends on why you're telling the person, the kinds of things you usually talk about, and the depth of the discussions.

There's no easy way to tell someone. Consider just being direct. People know when you have something to tell them that they're not going to be happy about. The minute you say, "let's talk" or words like that, they will hear it in your voice.

There are also no guidelines for how much information to share.

Consider the following ideas to help decide what you want to say:

  • One possibility is to just tell about your diagnosis, then ask if there are any questions. You can answer questions with a simple "Yes" or "No" or you can open up a discussion. One advantage to this approach is you don't have to reveal everything at once. You can just answer questions a little bit at a time.
  • Start the discussion by letting the person know there is a need or wish to talk rather than just blurt out the news. If you start by saying you have "bad news," you are setting the situation negatively. This will color the way the listener hears the news. Ultimately the stress that will bounce back to you. It is preferable to state the situation more neutrally. For example, you can say: "I have news." This is not meant to suggest that you use euphemisms or other words that make light of the situation and avoid words such as "death."
  • In addition to telling about the diagnosis, let the person know what you have learned about the disease.
  • Let people know whether you want them to censor what they say to you, and, if so, how.
  • Tell people that you need and appreciate their support. 
  • Ask for their understanding about unpredictable emotions that may arise at any time.  
  • Let people know you are in good medical hands.
  • Acknowledge the other person's emotions.
  • Answer their questions.
  • Let the person know about your immediate and/or long terms needs with which the person can help. Even if it is "only" asking for their emotional support or to help with helpful tasks. By discussing specific needs, you help change the subject from the news to an action plan. The discussion gives the news time to start to sink in.

Don't let a person's "right to know" interfere with your needs.  It is perfectly appropriate to respond to questions with someting like "I don't want to go into all of that" or "I would rather not talk more about it."

Speak out if someone offends you. When people are being insensitive, let them know.

NOTE: If you are telling a parent: Plan on supporting the person. Parents don't think children will die before they do and are likely to be especially upset by your news no matter how many medical advances have been made. Also expect a lot of questions.
 

 

Be patient and understanding with people. Give them time to adjust.

Which Of My Family And Friends Do I Tell?

It's up to you which of your friends and family, if any, to tell about your diagnosis. However, keep in mind:

  • Friends and family want to help. If they know, they can be part of your support team.
  • People will talk with each other. If they don't hear the news from you, they are likely to hear it from someone else. It may be better for them to hear the story directly from you than incorrectly from some one else.
  • You may want to give yourself some time after a diagnosis to understand the situation and deal with the inital emotions before telling some people.

If you have young children living with you, it is important to tell them. They'll know something is wrong, and will blame it on themselves. Engage them in helping. (For information about telling underage children, click here.)