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Building a Care Team That Works for You

Advocacy & Empowerment
August 05, 2026•7 min read

After two decades of complex immune-related conditions, I stopped grading my healthcare by outcomes alone and started asking a different question: did I feel heard?

By Christina Russo, Health Coach at the Immune Confident Institute

For most of my life, I believed my role in healthcare was simple: show up, answer questions, follow instructions, and wait. If something was broken, a doctor would fix it with a medication, a procedure, or a treatment plan. And if I am being honest, I largely assumed one doctor was much the same as another.

That model works reasonably well for many acute problems. A broken bone. An infection that clears with antibiotics. But over roughly two decades of navigating my health as an adult, it did very little to create meaningful progress with my more complex, chronic conditions. I would start pulling a thread, exploring why I had this infection, that injury, this strange symptom, and eventually run out of steam before finding real answers. I used to call it opening a can of worms, because it was expensive, time consuming, and physically and emotionally exhausting.

Along the way, I became accustomed to feeling dismissed. My labs were normal. I looked healthy. Somehow those observations seemed to carry more weight than the fact that I lived with chronic pain, recurring infections, and stretches where simply functioning felt incredibly difficult. So I became what I would now describe as an overly compliant patient. I felt guilty asking questions. I felt guilty challenging assumptions. I felt guilty offering my own observations. I believed my job was to receive care, not participate in it.

The appointment that changed how I measure care

A rheumatologist who saw the fuller pattern in my health referred me to Dr. Kara Wada, who confirmed a primary immunodeficiency alongside my autoimmune patterns. About a year into treatment, I attended what seemed like an ordinary follow-up appointment. I still remember it clearly, because physically, not much had changed. I still felt terrible. And yet I walked out with a little pep in my step. The closest thing I can compare it to is the feeling after a fresh haircut, and it caught me off guard, because it was not how I was used to feeling after a doctor's appointment.

What was different? I felt validated. I felt respected. I felt collaborated with, and I felt supported. Most importantly, I felt hopeful. Not because someone had solved all of my problems, but because someone was willing to walk alongside me while we figured things out together.

That appointment did not change my health overnight, but it changed the way I viewed healthcare. For the first time, I understood that how I felt inside a healthcare relationship actually mattered.

Grade the visit, not just the outcome

Up until that point, I had evaluated healthcare almost entirely by outcomes. Did I get a diagnosis? A prescription? A treatment plan? Afterward, I started paying attention to something else:

  • Did I feel heard?

  • Did I feel respected?

  • Did I feel safe asking questions?

  • Did I feel like I was being treated as a whole person rather than a list of symptoms?

The bar had been raised, and once it was raised, I could not un-raise it. I started looking at all of my practitioners through that lens. Some welcomed my questions and viewed my growing knowledge of my own conditions as an asset. Others did not. Slowly, I realized something that now seems obvious: not every practitioner belongs on my care team.

That was a radical idea for me, because I had spent most of my life assuming healthcare was something I received, not something I participated in, had a voice in, or helped to shape.

Qualities matter more than titles

In chronic illness communities, people often ask what type of practitioner is best equipped to help with their conditions. I encourage a different question: what qualities are you looking for in the people helping you navigate your health?

Over time, I have come to care far less about titles, referrals, and even specialties, and much more about how practitioners think. How they listen. How they keep learning. How they approach complexity and partner with patients. The practitioners who have had the greatest impact on my life share certain traits: they are curious and humble, compassionate, continually learning, and willing to recognize that patients often have valuable insight into their own lived experience.

Living with multiple chronic conditions, I do not always need practitioners who know everything. I need practitioners who are willing to keep learning. I do not always need certainty. Sometimes I need curiosity. And I rarely need someone to take over. I need someone willing to partner with me, because complex, multi-system conditions are rarely solved in a single appointment, by a single specialist, through a single lens.

You are the hub of the wheel

One concept that has been especially helpful for me is to think of myself as the hub of a wheel. My practitioners are the spokes: my primary care provider, my specialists, my physical therapists, even my pharmacist. They are my care team. But I am the hub. I am the one living inside the full picture, carrying information from one appointment to the next, noticing patterns, and experiencing the overlap between conditions. I am the one living with the consequences of every decision that is made.

Because of that, one of the most important roles any of us can play is coordinator. Not because we should have to, and not because the system was designed that way, but because with complex conditions, someone has to connect the dots.

That realization also changed how I think about healthcare decisions. Sometimes the least expensive option becomes the most costly when it is measured in frustration, delays, unnecessary appointments, or years spent going in circles. A practitioner's willingness to listen, collaborate, and think critically creates value that never shows up on a billing statement. I cannot tell anyone where to spend their time or resources, but I do encourage you to think beyond immediate cost and consider the broader impact a practitioner may have on your health, your functioning, and your daily life.

Intentional, not perfect

Building a care team is not about creating a perfect team. Most of us do not have perfect circumstances, and I face the same real-world limits many of you do: insurance networks, provider availability, finances, energy, and time. It is about becoming intentional. It is about recognizing that we have more influence than we may realize, and being willing to ask questions, learn, advocate, and get creative when necessary.

Chronic illness taught me that I needed to become an active participant in my care, not because I wanted to, but because I had to. And once I accepted that responsibility, not as a burden but as an opportunity, everything began to change.

So here is what I want to leave you with. You do not need a perfect care team. Most of us do not have one. You do not need unlimited resources, because most of us do not have those either. But you do deserve practitioners who listen, who respect your lived experience, and who are willing to learn, collaborate, and think alongside you. And perhaps most importantly, you deserve to recognize that you have a voice in your care. Whether you have realized it yet or not, you are already a member of your care team, and you might even be the most important member of it.

Let's keep this conversation going

What quality matters most to you in a practitioner, and when did you first notice its presence or its absence in your own care? I would love to hear your story in the comments.

If you want support building a care team that starts from listening:

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