Be Your Own Best Advocate

 

For some of us, receiving a cancer diagnosis was the first time, aside from routine doctors’ appointments, that we became intimate with the medical establishment. For others, the road to our diagnosis has been paved with weeks, months or sometimes years of not knowing, going from physician to physician, test after test, trying to figure out what is going on with our health and our bodies.

In either case Cancer World is a place in which most of us, as grateful as we are for our doctors and hospitals, spend too much time in waiting rooms, testing areas, chemo chairs, being poked and prodded by medical professionals.

We are cancer patients in their world and it sometimes feels as if a piece of our personal identity, and sometimes our humanity, is taken with that term.

Many of us were brought up to not question authority, or at least not too much. We were taught to smile, be agreeable and compliant and not cause a ruckus.

All of that translates into a cancer patient who shows up for her appointments, takes her medicine and follows doctor’s orders. This means we get the tests and treatments we need and have a better chance of kicking cancer.

It also might mean that we don’t speak up, don’t share our concerns, questions and frustrations as we should with those overseeing our medical care. We may have questions or concerns that are dismissed as unimportant or silly, or we might let ourselves be talked to by physicians and other medical staff in ways that aren’t appropriate – whether rude, condescending, impatient or patronizing. Kendall was once named “pukey girl” by a nurse because her pain medication after surgery was causing her to vomit. Annette had a doctor rudely argue with her that she hadn’t had a very painful procedure performed, twice – when she had – just because he saw it as unsuccessful. No, we’re not kidding!

In this Cancer World, which is so overwhelming and distressing, we learn, sooner or later, that we either speak up and speak back, or we take the hit and wait until we get to a private space and then punch a pillow or cry. We’ve both had instances where, rather than speaking up in the moment, we go home, consider what happened and wish we had stood up for ourselves.

Being our own best advocate becomes necessary if we are to persevere. We need to empower each other and ourselves to ask questions, demand fair and kind treatment and have our wishes and humanness respected. We must strengthen our voices and not be afraid to speak our truth and let doctors, nurses, and technicians know when they are lacking in respect and care.

Sometimes, though, we just don’t have the energy or spirit to do so. In these times it is invaluable to bring an advocate with us to appointments and tests. Someone who will listen, speak and act according to our wishes on our behalf when we need some support. A friend, neighbor or family member can be an advocate for us.

Cancer requires a lot from us. And this also includes strengthening our voice and being empowered around all aspects of our care and treatment.

As Billy Joel always says: “Don’t take any shit from anybody!”

Have you experienced this sort of treatment from a health care provider? How did you handle it?