Telling Others You are a Survivor

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.

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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 sections for questions to ask and for more resources.

During the cancer journey, there may be times when you are not certain whether you want to tell certain people that you have had a cancer diagnosis. Survivors often struggle with who to tell and when to introduce the subject. Some feel that their experience with cancer is a big part of their life and that people need to know. Others may feel that having cancer is very personal, and that there is no reason to talk about it. Understanding your feelings may help you make decisions if you want to tell others you are a survivor.

Being a survivor means different things to different people. There is no right or wrong way to feel about sharing this information. Whether or not to tell is your choice. However, there are some common times when this issue may arise including:

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

What factors should be considered before telling others?

The same or similar questions about whether to tell others that you are a survivor may cross your mind whenever you meet someone new.

Common questions that may occur during such a time include:

• 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 do not want to tell others that you are a survivor. However, if you have had a physical change during your treatment for cancer, people may ask you how it happened. You may feel more prepared to answer questions if you have thought about how you will respond to questions about your body or cancer before others ask may. Some strangers may ask questions, and this can seem to be rude. However, some of these strangers may be offering support because they are survivors themselves.

You get to decide if you want to discuss physical changes or your cancer experience. Some days, with some people, you may feel like telling the whole story. Other times, you may just want to tell the people who ask you that it is none of their business. Your feelings may go from one extreme to another, and you might respond in different ways to each new situation. Do what feels most comfortable to you in the moment.

What may make it 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.

• Common reasons survivors may not want to tell others include:
  
  • Feeling embarrassed talking about cancers of certain body parts, such as breast, anal, or prostate cancers
  • Not wanting to tell the whole story or answer a lot of questions
  • Feeling like the cancer experience is still too new, painful or upsetting
  • Wanting the cancer experience to remain personal and private—only sharing it with a few people
    
• Reactions from others that survivors may worry about include:
  • Pity or feeling sorry for the survivor
  • Opinions about the cause of cancer
  • Shared stories about how people they knew did not survive
  • Advice about how you to feel or cope with cancer
  • Suggestions about the best or worst treatment methods
  • Inability to discuss--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 is 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.

Not everyone will react negatively. Some people who you thought would react negatively may surprise you will their understanding and openness to hearing what you want to share. Talking with others may offer an important opportunity to correct 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.

Consider the following things you can do to make it easier on yourself and the people you tell:

• Ask them to set aside some time so you can tell them something that is important to you. Then, share as little or as much as you want. Allow them some time to understand what you are saying, listen to them, and ask if they have any questions.
• In some cases, you might want to write a letter or an email to a person. This will allow you to think about what you want to say, and also give the other person a chance to think about his or her response.

How can a survivor prepare to tell others about a cancer diagnosis?

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.

• Write in a journal about how it feels to be a survivor.
  
  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 changes in your life. You may want to write in a quiet place. At first, a blank page can feel intimidating. However, writing for a short time every day is a good place to start.
  
  Consider writing about topics such as the following:
  
  
  • How do I feel each time I go for a medical appointment?
  • 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 from my life before cancer?
  • What opportunities for positive changes come with 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.
    
    
    • Find a quiet spot, and imagine you are with this friend.
    • Imagine that you make the opportunity to tell your friend that you are a survivor.
    • Imagine that your friend responds with questions.
    • Imagine that you respond to the questions comfortably.
    • Imagine your friend thanking you for sharing this important news.
    • Imagine yourself thanking your friend for being able to hear it.
    • Become aware of how you feel from this successful talk.
    • Practice this once or twice daily until it feels very real to you.
      
  • Practice 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.
    
    If a response upsets 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.”
    
    If a response seems inappropriate:
    
  • You may have the experience of another person laughing, or saying something insensitive.
  • Try to be as patient as you can. Other people may be overwhelmed by the 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.
    
    If someone just walks away:
    
  • As painful as this can be, remember that they are upset by the subject of cancer and probably cannot talk about it.
  • Others may have a history with cancer that impacts them when they hear your news.

What if telling others becomes depressing or overwhelming?

If you become anxious or depressed, ask a member of your health care team for a referral to a therapist who works with cancer survivors. Most cancer centers employ oncology social workers who are specially trained to work with survivors and their loved ones. 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.

Start by interviewing the therapist to find out if he or she is the right professional for you. Speak honestly about your situation, 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 type of 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 work with people who are anxious? Depressed?
• Will my insurance cover your costs?
• Do you know community resources for people with cancer?

This document was produced in collaboration with:

Lori Worden, MSW, LCSW
Association of Oncology Social Work

Works Cited
Sue P. Heiney, Joan F. Hermann, Katherine V. Bruss, et al (2001) American Cancer Society 2001 Cancer in the Family: Helping Children Cope with a Parent’s Illness.

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Telling Others You are a Survivor: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. 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 Additional Resources section for links to more resources.

• 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.

• Consider the following examples when practicing 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 frequently 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.
    • How do you tell her?
    • What if she seems scared off?
    • What if you lose this new friend?
      
  • You recently started dating a new person. You really like this person and are worried that if you reveal that you have cancer it might end the relationship.
    • How do you bring it up naturally?
    • How do you explain scars?
    • How will you respond to different types of reaction?

Keep in mind that there are no right answers to the above questions. You have to think about what response you are most comfortable with and decide at that particular time what you should or should not tell at this time. 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 – and that is okay.

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Telling Others You are a Survivor: Additional Resources

The previous sections of this document provide detailed information, suggestions, and questions to ask related to this topic. This section offers a listing of additional resources that are known to provide support and quality services that may be helpful to survivors during the cancer journey.

LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

LIVESTRONG SurvivorCare offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about treatment options and matching to clinical trials or treatments in development. Counseling services and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations including CancerCare, Patient Advocate Foundation and EmergingMed.

American Cancer Society (ACS)
www.cancer.org

The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.

CaringBridge
www.caringbridge.org

CaringBridge is a nonprofit organization that offers free, easy-to-create web sites to connect family and friends during a health crisis. This site can help ease the burden of keeping loved ones updated. It provides a way for them to send their support and encouragement. Step-by-step instructions are provided for creating and updating the site you create.

Cancer and Careers.org
www.cancerandcareers.org

This website provides information and tips for women who are balancing work with cancer treatment. Although targeted to women, much of the information is helpful to men as well including ideas for managing stress and talking to coworkers and others about being a survivor. Information includes making treatment decisions, organizing your health care information, managing health insurance, and maintaining your appearance and physical comfort during treatment.

Other sections of the website are directed to employers, co-workers, caregivers and the community. Specific guidelines are provided on how to support and help survivors in the workplace. The site includes charts, checklists, and questions to ask your health care team. They also offer an online career resource center with free career coaching services.

MyLifeLine.org
www.mylifeline.org

MyLifeLine.org is a national nonprofit organization that empowers cancer survivors and caregivers to create free, customized websites. The goal of this online service is to allow survivors to easily communicate with friends and family during the treatment process.  By organizing your personal support community online, MyLifeLine.org hopes you will foster connection, inspiration and healing. 

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