Navigating the healthcare system alone is like traveling to a new country without speaking the language and without a map.
– Jeremy Gurewitz

This time last year, I had one doctor. Right now, I have six—less, if you count who I am actively seeing; more, if you count pathologists, radiologists, and residents. A cancer diagnosis doesn’t get you one specialist, but a whole team of them, depending on the nature of your disease. There are medical oncologists who handle chemotherapy, immunotherapy, hormonal therapy; radiologists who handle imaging and image-guided biopsies; surgical oncologists who handle tumor excisions; plastic surgeons who handle attendant reconstructions; and radiation oncologists who handle radiation therapy.

Each provider has their own squadron of nurse practitioners, scribes, medical assistants, and schedulers, not to mention rotating residents and fellows, all functioning to maximize the physician’s time. Before my medical oncologist walks into the room, her nurse practitioner has already spent an hour with me answering all my basic questions. I don’t bother asking my surgeon about perioperative care or logistics because I know her medical assistant and surgery scheduler will handle all that—I stick to intraoperative questions only she can answer. I know that the messages I write my doctors are being read by nurses.

I know this, of course, because my own clinical team does the same for me. Occasionally a question will filter through—did you send that referral? can we overbook this patient?—but most don’t. Occasionally I’ll get a doctor-to-doctor communication or request for a favor, but most of us try to respect the system.

Even so, even knowing how the system works, navigating it as a patient can feel overwhelming. Engaging with layers of staffing to get an answer or appointment—figuring out when to send an online message versus call a general or direct line, and how long to wait before trying again—can feel like a full-time job, with its own set of challenges. Sometimes staff have been so rude on the phone that I’ve hung up and cried; other times one kind and helpful person has made my day. Sometimes folks have gotten back to me as they said they would; frequently they have not.

There’s this constant tension between advocating for yourself versus trusting the process. Am I not hearing back because they need time to get approval from a physician or another administrator? Or because my case has slipped forgotten to the bottom of some pile? I know from experience that both are equally possible. Is there a detail my well-meaning team has overlooked, or should I trust that they’ve got it all covered? Again, both have been the case. The key is figuring out which is which, at any given time. 

You want to be strategic. You want to ask the right questions, be aware of the right details, benefit from the experience of others, push at times for what you need. But you also need to remember that you cannot control for every contingency. That what you think needs to happen may not actually need to happen. That someone else’s experience may well differ from your own. That it’s not always helpful to know too much. That sometimes, nothing but time can solve the issue. 

In the end, it’s not just what you do but how you do it. The temptation will always be to veer towards apathy on one end (too stressful or exhausting to care) or anxious micromanagement on the other (must control everything to ensure desired outcomes). The harder thing is to care while letting things work out on their own. Or to step in without becoming anxious about the results.

The other day, I watched our older boy compete in the 200-meter fly, one of the most grueling events in the sport. One does not get through eight lengths of butterfly in the pool without being conditioned from hours of daily practice—when he dives in, he’s trusting that process, trusting his coaches and the time he’s put in. But none of that makes the race: what drives his hand to the wall is sheer will, a determination to go as hard as he can which only he can supply in that moment. Advocate for yourself; trust the process.

But watching from outside the water, I see more than all that. I see his friends, crouching down to cheer him on as loudly as they can. I see the goodness of a sport which puts him out in the elements and away from screens. I see the beauty of the stroke itself: the way his body surges through the water with such obvious effort and grace, both together, the perfect picture of what it means to move through the world. And I think: this has nothing to do with when his hands touch the wall. The ability to work without that work wrecking you, the ability to care without cares overwhelming you, lies somewhere in our ability to see that, to see through to a grace and meaning and movement that lies beyond the waters we navigate through.