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Learning to Advocate for Yourself

to Get the Support You Need through Cancer

by Irene Goss-Werner, MSW, LICSW

Knowledge image

Communicating your needs when you have cancer may seem straightforward, but for many people, self-advocacy can be daunting. However, once you learn some basic self-advocacy skills, you’ll find that communicating your needs to your medical team, partner, family, friends, or colleagues will allow others to be involved in your care in the ways you want them to be. By using the follow­ing purposeful, thoughtful approaches to communication, you’ll be better able to let others know what is and is not helpful, while enabling yourself to set limits and more easily express your concerns.

Clarify what you need.
Don’t assume that others will automatically know what you need. Your support system may be unsure of what is most helpful to you. They also may be strug­gling with the desire to be supportive while respecting your privacy. Thus, your specific input can provide needed clarification for those who want to help. You can give concrete suggestions for how a person can help, such as doing your grocery shopping, preparing or delivering meals, driving your children to and from school, or helping take care of your pet. If you find comfort in the attentive presence of a friend, you might simply suggest that person drop by for a visit. Additionally, it’s important to clarify your needs to your medical team, as they need to know what is most helpful to you in order to optimize your care.

Have your feelings heard.
Commu­nicating your feelings is a positive way to relate with others, opening a window to your innermost self. This can be a stepping-stone toward resolving unmet or unidentified needs. However, some­times when you’re trying to express your feelings, a well-intentioned friend may focus on problem-solving and making recommendations rather than being a truly attentive listener. You might find yourself teaching others when you simply need an ear to listen instead of practical assistance. Having your feelings genuinely heard by an­other provides validation and a witness to what you’re experiencing.

If you find comfort in the attentive presence of a friend, you might simply suggest that person drop by for a visit.

Author of Article photo

Irene Goss-Werner

Give yourself permission to ask for help.
You may be concerned that if you ask for help, others will see you as a burden and will feel overwhelmed or uncomfortable. Perhaps before your diagnosis, you often fulfilled the role of caregiver and you now feel that you are disappointing those you once provided care for by being unable to maintain that role. You may feel guilty or worry you’re acting selfishly, but those close to you likely understand and genuinely want to help you. Letting people know some of your concrete needs gives them the opportunity to actively participate in this experience with you, which may in turn help them better cope with your situation, as they will know they are making a differ­ence. Framing a request can take a range of forms, such as “I wonder if it would be possible for you to …” or “You know I am so used to being inde­pendent that asking for help is difficult, but it would be helpful if you …”

One person doesn’t have to meet all of your needs.
It may be most com­fortable and productive to allow more than one person to help out. However, identifying a point person to function as the main com­municator among your support sys­tem who will organize tasks and schedules can be useful. While this type of resource may not be an option, be receptive to those who are available and who want to be involved in helping you through this time.

Set limits.
As you focus on pro­moting self-care, be intentional about setting limits. For example, watch the length of time you spend talking on the phone, entertaining visitors, working on the computer, or doing household tasks. Your support system may not realize your level of fatigue or dimin­ished stamina, so it’s important to let them know when you need to rest.

Advocating for yourself in this way may feel awkward or uncomfortable at first, but keep trying. You’ll find that clear, concise communication is the best way to get the support you need.

♦ ♦ ♦ ♦ ♦

Irene Goss-Werner is a clinical social worker in the Gynecologic Oncology program at Dana Farber/Brigham and Women’s Cancer Center in Boston, MA.

This article was published in Coping® with Cancer magazine, January/February 2014.