Building Your Community of Support for MBC
Talking with others about your diagnosis can be a great source of comfort, but for some it can also be stressful. Finding the right time for you is important. It’s OK to want to wait until you make sense of the diagnosis before you tell others.
Writing down what you want others to know about your situation may help you express your feelings more clearly. The words you use may cause powerful emotions in all of you. Thinking ahead of time what you want to say also allows you to decide how much information you want to disclose. You may be a private person who only wants to share the basics. You may find that sharing more details helps you figure out the situation in your own mind.
Those around you may feel more at ease when they can be helpful, so don’t be hesitant to tell people what you need. Doing so may help you conserve energy for what you want to enjoy most.
Finding the right time to talk about your diagnosis is important. It is OK to want to wait until you make sense of it before you tell others. You may feel more comfortable telling friends and family after you’ve done your own research and talked with your doctors about treatment options.
Who you tell and when you tell them is a personal choice. You may find that telling one or two people is best in the beginning. Or, you may want to tell as many people as you can. Do what’s most comfortable for you.
Predicting other people’s reactions isn’t always possible. At a time when you need comfort, you may find yourself comforting others. Remember, though, that the people closest to you are sometimes the best support system.
A common reaction you may hear is “Let me know how I can help.” Take it as a sincere offer and suggest something specific.
Managing metastatic breast cancer is ongoing. It’s unlikely that you will have only a once-and-done conversation with those you care about. It’s up to you to decide how often you want to update people and in what way.
- Some people find it useful to go online to send updates to friends and family so they don’t have to repeat information over and over.
- Others prefer having a designated person who gets updates and then shares them with the appropriate people.
Many will want to be there for you. But some may surprise you by the way they react to your news, some even pulling away. Remember:
- Your friends and family may need time. They may feel sad, angry, scared or confused.
- Sometimes people want to help, but don’t know what to do or say.
- Some people will respond in an unsupportive or insensitive way. Most of the time, insensitive remarks or reactions are grounded in the other person’s fear and discomfort.
It may be helpful to plan ahead for how you want to respond to insensitive reactions. It may be as simple as saying you prefer to discuss your situation with your medical team, or changing the subject. Be direct. Consider saying, “This is not helping me right now.” If someone is not helpful to you, it is OK to set boundaries.
- Surround yourself with good listeners.
- Be as open as you can about what you are thinking and feeling. Some people may be afraid to ask.
- Avoid people who make you feel uncomfortable.
- Ask other women who had breast cancer about resources that they found helpful.
- Tell people when you need them to stop “helping” and start listening. Say, “I need you to sit down, look at me and listen to me for a few minutes so I know you’re hearing what I’m saying.”
- Be specific about what you need.
- Be specific about what you don’t need. If people try to do something for you that you would rather do yourself, let them know. If you want to talk about something other than cancer, let them know.
- Talk with people who put you at ease—a partner, friend or healthcare provider—and ask for tips on asking for help.
- If someone starts to tell you stories or give you advice you don’t want to hear, ask the person to stop. Don’t be afraid to be blunt. Say, “Please stop. This is not helpful to me.”
- Call LBBC’s Helpline and talk with a woman who has had breast cancer about how she asked family and friends for help and got support.
You may wish to look for support outside of family and friends. Your treatment center is a great place to start. Let your doctors and nurses know how you’re feeling. Ask to speak with an oncology social worker or counselor. Many hospitals have libraries just for people with cancer.
If you feel comfortable in groups, ask your oncology nurse or social worker to recommend a support group. If you prefer talking with someone alone, ask to be referred to a mental health provider—a social worker, psychologist, counselor or psychiatrist.
Take advantage of the groups you belong to. You may find great comfort in your religious or spiritual communities. Talk with members of your church, synagogue, temple or mosque. Speak to the leaders of volunteer groups or community organizations.
Sometimes you just want to talk with someone who knows what you are going through. Ask your healthcare team for the names of breast cancer groups that can connect you directly with women affected by breast cancer. At LBBC, we offer a Breast Cancer Helpline, staffed by trained volunteers who have had breast cancer. These women listen and help you think through your questions and concerns. We can even match you with a woman with a similar diagnosis or experience, if that’s what you want.
Learn more about getting the support that’s right for you.
Whatever strategies you decide on, you will find that it helps to have a circle of caring friends and family members to help you cope with metastatic breast cancer. Sometimes that will involve talking about your cancer. Other times, just being together will be enough.