Growing up, I always thought of hospitals as having a certain mystique that was impenetrable to the outside world. White-coated figures paraded through long hallways and entered doorways marked "restricted access," behind which I imagined miracles happened.
As a medical student, I continued to hold the medical world in great awe. All that changed the day that my mother became a patient. After a year of telling her primary care doctor that something was wrong, she was finally diagnosed with metastatic breast cancer—cancer that, by then, had spread to her lungs, her bones, and her brain.
I was wracked with guilt. I was training to be a doctor—why didn't I figure out that her symptoms indicated cancer? Why didn't I try to convince her doctors to look harder? Why didn't I know that medicine was so fallible?
Over the next several months, I saw firsthand not only how difficult it is to navigate the healthcare system, but also how scary and unwelcoming it can be. After her cancer surgery, my mother was supposed to be recovering, but every few hours, someone would come in and switch on bright lights. There were loud beeping noises around the clock; soon, she lost track of day and night. Her providers were not bad people, but they were overworked and often disconnected from the needs of their patients.
I struggled to find the right balance between advocating for my mother and being too pushy. Actually, it was my mother who was really afraid—afraid that we'd make her doctors so angry that they would give her worse care, or even fire her as a patient. She had many other concerns too, such as how to tell the rest of our family about her diagnosis, and how to take care of my younger sister, who at the time was just nine years old.
Reflecting back on the experience, I have five lessons for other young women whose lives are changed forever by their mother's cancer diagnosis:
Be there for her. My mother was a proud and capable woman. She was among the first class of college graduates after China's Cultural Revolution, then immigrated to the U.S. by herself. The last thing she wanted was to feel that she was dependent on other people. But cancer can be lonely and overwhelming. Though she never asked for help, I know she was grateful that I was there to accompany her to terrifying experiences like the first chemo appointment. Even if you can't physically be there all the time—I was attending medical school 3,000 miles away—there are things you can do to offer your support. For us, it was talking to my sister and updating other family members. Be conscious not to reverse roles and treat your mother as if she can't care for herself; rather, offer help and be there to do what needs to be done.
Do your research. Use whatever tools are at your disposal—even if it's just an iPad. Find out about her doctors. Research her diagnosis and possible treatment options. Join online discussion groups. Not only do they offer supportive communities that you can connect with, but they can be good sources of advice. That's not to say that all the advice you find will be relevant, or that you need to read every single journal article on her cancer. But being informed will help you to understand the medical jargon and come up with questions to ask her doctor.