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Editor’s note: This guest post was written by Wendy S. Harpham, M.D., a doctor of internal medicine, 25-year cancer survivor, best-selling author, and nationally recognized speaker.
Self-advocacy. The first time I heard that term in a medical context it conjured images of clench-fisted activists picketing in front of hospitals, demanding better care. Actually, self-advocacy is simply the act of representing yourself—your views, needs, desires and interests.
If you want to get good care and live as fully as possible during and after cancer treatment, you must advocate for yourself to your healthcare team. Your physicians and nurses can respond with expertise and compassion only if they understand what you’re experiencing and worrying about. Here’s the thing: They depend on you to tell them. I know this as both a 25-year cancer survivor and a physician.
In my office, despite my efforts to encourage patients to share everything, occasionally patients kept their symptoms, concerns or questions to themselves. Their silence both frustrated and puzzled me. Then my cancer diagnosis yanked me to the other side of the stethoscope where I found myself hesitating to tell my physicians about certain symptoms or worries. Insights and affirmations—and practice! —have helped me overcome common obstacles to self-advocacy.
While going through treatment and recovery, you may be tempted to downplay symptoms because you…
· Don’t want to complain
· Believe you’re supposed to have symptoms
· Worry about disappointing or annoying your physicians
· Want to avoid more tests, doctor visits or unwanted news
· Assume your doctors already know how you feel— or can’t help
· Don’t want to distract your doctors from treating your cancer
· Fear your doctors will decrease (or stop) your treatments and hurt your chance of survival
It’s perfectly fine to have such thoughts and feelings. They mean you’re human. It’s not okay, though, if they keep you from talking candidly with your doctors and nurses. For those times you’re tempted to keep a symptom or worry to yourself, try motivating yourself with mantras such as:
· My job is to provide accurate, complete information about my condition and my concerns.
· Talking about symptoms is not complaining; it’s reporting valuable information.
Let’s say you tried to be forthright but feel your physicians dismissed your symptoms or questions, or they seemed too rushed to address them properly. Encourage yourself with mantras such as:
· My goal is to get the best care possible, even if I have to push.
· I have a right to understand my condition and my choices.
· My job is to keep asking questions until I understand.
Any time your healthcare team doesn’t address your needs, for whatever reason (and it’s usually best not to waste energy on blame), be direct: I still have concerns. I need you to go over this again, please. If that’s too stressful, simply ask a nurse, friend or relative to advocate for you: She is still concerned about…and has questions about….
Cancer care is a shared mission. Through self-advocacy, we enable our physicians and nurses to provide us the best care, which increases our chance of achieving the best possible outcome today, tomorrow and every day.
If you need more advice on how to share your symptoms with your cancer care team or want to connect with others who may be experiencing similar side effects, we encourage you to visit our online community, Beyond The Shock.