Telling Others You are a Survivor: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources.

During their survivorship, some survivors think about whether or not they want to tell people that they are cancer survivors. You may feel that your cancer experience is a big part of your life and that in order to know you people must know you are a survivor. Or you may think that cancer isn’t a part of your life anymore and that there is no reason to tell others about it. Being a survivor means different things to different people, and there is no right or wrong way to feel about telling others you are a survivor. Whether or not to tell others is your choice.

Telling others that you are a survivor can be difficult. Survivors often struggle with who to tell, and when to introduce the subject. Understanding why talking about this subject is sometimes difficult can help you work through your feelings and feel more confident about your survivorship.

Examples of times you may wonder if you should tell others you are a survivor:

• When you start a new job
• When you go to a new school
• When you start dating someone
• When a new friend or colleague is diagnosed with cancer
• When someone asks you about a scar or physical change caused by cancer

Some survivors find telling others helpful; others don’t think that it’s important for people to know. If you want to tell others you are a survivor but don’t know how, there are things you can do that may help you become more comfortable telling others. Understanding the different ways to talk to others about your cancer experience can help make it less awkward. Sharing your experience might help you gain support during your survivorship.

What are some signs that a survivor is thinking about whether or not to tell others?

The same questions about whether to tell others that you are a survivor may cross your mind every time you meet someone new. People may ask you questions about your physical changes or cancer in general, and you will have to decide whether you want to tell them you are a survivor.

Survivors that worry about telling others may ask themselves:

• How do I introduce the new me?
• Do I tell them I am a cancer survivor? When?
• Will I scare them off?
• Will they feel sorry for me and see me as a victim?

You may decide that you don’t want to tell others that you are a survivor. Although, if you have a physical change that happened during your treatment for cancer, people may ask you how it happened. Thinking about how you will respond to questions about your body or cancer before others ask may help you feel more prepared to answer their questions. Even strangers may ask about your appearance, and this can seem rude at times. However, some of these strangers may be survivors themselves, offering to lend their support.

Examples of physical changes caused by cancer treatment that people might ask you about:

• You had an arm or leg amputated
• You have visible scars
• You have visible markings from radiation

It is your decision whether you want to explain to them about your physical change and your cancer experience. Some days you may feel like telling the whole story, other times you may just want to tell the people who ask you that it’s none of their business. You may go from one extreme to another – telling someone immediately or never bringing it up, feeling comfortable or feeling uncomfortable. You might respond in different ways to each new situation. Do what feels most comfortable to you in the moment.

What are some examples of times a survivor may think about whether to tell others?

• You and your family have been invited to stay with friends at their cabin this weekend. You are scheduled to have your yearly check-up the following Monday. Usually, you are very overwhelmed and anxious the weekend before your check-up and prefer to stay at home and relax. Do you tell the friends about your check-up or make up an excuse?
• You have a colleague at work with whom you now work closely on many projects, but you didn’t know him very well during your treatment. He asked why you were away from work so much a few years ago. Does he need to know that it’s because you had cancer?
• You recently made a new friend whom you like very much. You are meeting her for coffee and want to share your survivorship with her. Do you tell her? How? Will she be scared off? Will you lose this new friend?
• You recently started dating a new person. You really like her and are worried if you tell her you have cancer it might scare her off. How do you bring it up naturally? How do you explain your scars? How will she react?

You have to think about what response you are most comfortable with and decide at that particular time what you should or shouldn’t tell the other person.

Preparing yourself for the conversation may help you feel more confident. You might not be able to predict when you will tell someone. It might just happen – that’s OK. Each experience of cancer is as different as the people diagnosed with it. Each survivor who wants to tell others that s/he is a survivor may feel differently about the best time or the best way to tell others. You will decide what is right for you.

What are some of the reasons it can sometimes seem difficult to tell others?

There are many reasons why it can be difficult to tell others that you are a survivor. You may have your own personal reasons for not wanting to tell others. You may not want to tell others because you are worried about how they will react.

Some of the reasons you may not want to tell others:

• You may feel embarrassed talking about cancers of certain body parts, such as breast, anal or prostate cancers
• You may not feel like telling the whole story or answering a lot of questions about your cancer experience
• You may feel like your cancer experience is still too painful or upsetting to talk about
• You may feel like your cancer experience is personal, and you only want to share it with a few people

Some of the negative reactions you may worry about:

• They might feel sorry for you
• They may tell you stories about people they knew who didn’t survive cancer
• They may tell you how you should feel or cope with your cancer
• They might just walk away

You may have told people in the past who reacted poorly, and you don’t want that to happen again. Others' reactions to hearing that you are a cancer survivor may upset you. It may make you feel like you did something wrong. You did not do anything wrong. It’s important to understand that no matter how well you tell others or no matter how long you wait, some people may react poorly. If you want to continue to share your story, learning ways to respond to unexpected or poor responses from others can help you cope.

There are things you can do to make it easier on yourself and the people you tell, For example:

• You might want to ask them to set aside some time so you can tell them something important. Then, you can share as little or as much as you want and allow them some time to understand what you are saying and ask any questions they may have.
• You might want to write a letter or an email to the person. This will allow you to think about what you want to say and also give the other person a chance to consider their response.

Not everyone will react negatively. Some people who you thought would react negatively may surprise you and be understanding and open to hearing what you want to share. You may gain an important opportunity to coreect any misperceptions about cancer or about your experience.Telling someone that you are a survivor may give you another friend who can support you during the ups and downs of your survivorship.

What are some suggestions for survivors who want to feel more comfortable telling others?

• Write in a journal about how it feels to be a survivor.
• Practice telling others.
• Learn ways to respond to an unexpected response from another person.
• Talk to a mental health professional if worrying about telling others you are a survivor causes you anxiety, depression or other feelings that overwhelm you.

This document was produced in collaboration with:
Lori Worden, MSW, LCSW
Association of Oncology Social Work

Telling Others You are a Survivor: Suggestions

Write in a journal about how it feels to be a survivor:

Sometimes learning more about what it means to you to be a survivor and understanding how you feel about the whole experience may make it easier for you to tell others. Writing in a journal is a very private way of becoming more aware of how you feel about your cancer experience.

When using journaling to help you cope, find a blank book, and choose a focus for your writing. This will depend upon where you are in the process of accepting the new you. Go to a quiet place to do your writing. Try doing it for just a short time at first to see if you like it. A blank page can feel intimidating, but writing just for a short time every day is a good place to start.

Consider writing about the following topics:

• How do I feel each time I go for an appointment with my health care team?
• How did it feel when I told my loved ones I had cancer?
• What do I hope will change in my life after cancer?
• What do I like about the new me?
• What do I miss in my life before cancer?

Practice telling others:

• If you attend a support group, ask the leader to use one group session to ask members to either tell how they shared their news of diagnosis or to practice telling with one another.
• Write down how you will tell a new friend that you have cancer. Then read it, first to yourself, then out loud, then with an audience of a trusted friend. You can make changes and gain comfort after hearing it a few times yourself.
• Use visualization to imagine yourself confidently telling a new friend that you are a cancer survivor.
  1. Find a quiet spot, and imagine you are with this friend.
  2. Imagine that you make the opportunity to tell your friend that you are a survivor.
  3. Imagine that your friend responds with questions.
  4. Imagine that you respond to the questions comfortably.
  5. Imagine your friend thanking you for sharing this important news.
  6. Imagine yourself thanking your friend for being able to hear it.
  7. Become aware of how you feel from this successful talk.
  8. Practice this once or twice daily until it feels very real to you.

Learn ways to respond to an unexpected response from another person:

It is important to remember that you can never control how others will respond to you when you tell them you are a cancer survivor. You can only make decisions about how you will respond.

Some responses may upset you:

• First, take a deep calming breath.
• Remind yourself that you have done nothing wrong, that the other person may be responding to his or her own experience and fear of cancer.
• Ask questions such as “do you have questions?” or “what about this has upset you so?” This gives others the opportunity to reflect on their responses, and perhaps share their experiences. This gives you a place to start the conversation again.
• Explain to others why you told them. For example, “I wanted to tell you, because I’ll need your support when I go in for check-ups.”

Some responses may seem inappropriate:

• You may have the experience of another person laughing, or saying “What a relief it's not heart trouble!”
• Try to be as patient as you can at this time. Other people you tell may be overwhelmed by your news and need time to understand what they just heard. As difficult as it seems, they may be doing the best they can in the moment.

Some people may just walk away:

• As painful as this can be, remember that they are upset by the subject of cancer and probably cannot talk about it with you.
• Others that you tell may have a history with cancer that impacts them when they hear your news. They may have lost someone they love to cancer.
• Understand that people you tell may be doing the best they can in the moment.

Talk to a mental health professional if worrying about telling others you are a survivor causes you anxiety, depression or other feelings that overwhelm you:

Ask a member of your health care team for a referral to a therapist who works with other cancer survivors. Most cancer centers employ oncology social workers who are specially trained to work with cancer survivors and their families. Even if you are not a patient at a cancer center, the oncology social worker may meet with you or refer you to someone else in the community.

It is important to interview the therapist to find out if he or she is the right professional for you. Speak honestly with the therapist and let him or her know your reasons for wanting to work with a therapist.

Examples of questions to ask the therapist:

• What type of education background do you have?
• What license do you have?
• What is your experience working with people with cancer?
• What do you understand about the emotional response to this illness?
• Do you take my insurance?
• Do you work with people who are anxious? Depressed?
• Do you know community resources for people with cancer?

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