How to Cope - Survivor Learning to Advocate for Yourself to Get the Support You Need through Cancer

Man talking on phoneCommunicating your needs when you have cancer may seem straightforward, but for many people, self-advocacy can be challenging. However, once you learn how to advocate for yourself, you’ll find that communicating your needs with your medical team, partner, family, friends, and colleagues will enable them to be involved in your care in a way that is helpful to you. The following are some basic self-advocacy skills that will help you get the support you need through cancer. Once you gain a sense of these purposeful approaches to communication, you’ll be better able to let others know what is and isn’t helpful, while empowering yourself to set limits and express your concerns and wishes with greater ease. As a support in this process, community cancer centers and organizations have clinical social workers who are available to provide education and encouragement to survivors and families in regard to advocating for themselves.

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

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. However, if you’re still struggling to advocate for yourself, you can reach out to a clinical social worker who can help you as you work to master these self-advocacy skills.

Irene Goss-WernerIrene Goss-Werner is a lead clinical social worker at Dana Farber Cancer Institute in Boston, MA.

This article was published in Coping® with Cancer magazine, November/December 2017.