Self-Advocacy as Self-Care

Self-Advocacy as Self-Care

By Emily G - May 15, 2019

My little boy was born in November 2015, after a wonderful pregnancy and a mostly uncomplicated delivery. I was thrilled to be a mother, but also tremendously overwhelmed at the onslaught of new responsibilities that came along with new motherhood. Around six weeks postpartum, I began to experience significant back pain. However, any time I mentioned it, I heard the same refrain: you’re a new mom, breastfeeding will do that to you, it’s just part of postpartum recovery, you’re not sleeping much. As the months went on, the pain got worse. I sought out a few different specialists, in the hope that I could pinpoint the issue. Something in my gut told me that things were not right, but again, I heard the same things parroted back to me. I could probably do with some exercise, they said. I still needed to lose the baby weight. Maybe I needed to sleep more, eat healthier, and take better care of myself.

It wasn’t until my son was almost two that my primary care doctor found a lump in my breast. Unsure of what it could be, I underwent an ultrasound, then a mammogram, and finally, a tissue biopsy and bilateral MRI. The diagnosis was breast cancer, but the radiologist and oncologist thought it was localized, despite my frequent complaints of the back pain that had spread to my hips, my ribs, and throughout my back. I was frustrated and sought a second opinion. Immediately, the second oncologist recognized my pain as a red flag. She began to connect more dots upon viewing my MRI and recognizing the lesions on my sternum as possible metastases. She ordered a PET scan immediately, which revealed extensive bone metastases.

I did not know whether to feel horrified or edified. I had known something was wrong, but could not fully articulate the feeling in my gut. Despite my training as an attorney, I had little language to advocate for myself in an effective way. I didn’t know what I didn’t know. As the months into my treatment went on, I began to recognize my sense that something was wrong. I started flagging symptoms and unusual occurrences earlier, and reporting them in detail, without dismissing them or editorializing. Months later, I reported some unusual headaches, and my oncologist ordered a brain MRI, which revealed two small lesions taking root inside my head. She commented that we had found them early – very early. Despite the bad news, I felt edified, knowing that, finally, my concerns were being taken seriously. Being a patient with a serious, long-term illness comes with innumerable challenges, and it can feel unduly burdensome to report each small twinge, change, and off feeling, but that self-advocacy is a tremendous means of self-care.

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