What If Your Patients Aren’t Getting Better?
The healing power of presence when there’s nothing left to fix.
Most of us entered healthcare to help people heal. We studied diseases, learned protocols, and memorized algorithms, all with a goal in mind: to fix what’s broken.
But what happens when the body doesn’t respond? When no test confirms the pain, and no treatment plan offers relief?
In Complications, Dr. Atul Gawande writes, “Medicine’s ground state is uncertainty.” That uncertainty isn’t an edge case; it’s a core feature of this work. And for patients with chronic, multisystem illnesses like ME/CFS or Long COVID, it’s a daily reality.
As a retired veterinarian and a current ME/CFS patient, this is what I now believe: we’re not failing. We’re navigating the murkiness of care, where improvement is slow, nonlinear, or simply absent. But we might still carry this question: What can I do when someone isn’t getting better?
From Hope to Realization: The Patient’s Arc
I remember the last doctor I saw during the most intense stretch of my illness. She was a chronic fatigue specialist. After eight years of symptoms and medical dead ends, I walked into her office, still hopeful.
Before that first meeting, she’d run bloodwork that showed a low CD57 count. She interpreted this as a possible chronic Lyme infection.
Now here we were, sitting at a round table together. She made eye contact, shared handouts, and spoke with energy and optimism. “This is something we can treat,” she said. “There’s reason to hope.”
We began a rotating protocol of antibiotics and monthly labs, tracking that CD57 marker as if it were the key to my illness. But after seven months, it hadn’t budged. I hadn’t improved at all, and I was exhausted. I told her I needed to stop.
Over the phone, she warned me: “Your CD57 will drop. You’ll get worse.” But I didn’t. Two years later, when I returned to her office for routine care, she ran the same marker. It was still low. I was still here.
But this time, everything was different.
She sat behind her desk, far away and disengaged. There was no curiosity about why I hadn’t declined. No next step.
She asked why my partner hadn’t come. When I told her we’d broken up, she paused and said, “I’ve never had a patient lose a partner because of illness.”
I felt like a science experiment that had failed to perform for her.
And that’s when I completed the arc: initial hope, to the realization that the protocol won’t work, to the discovery that I’ve been left alone with all these unknowns.
When Disbelief Enters the Exam Room
In chronic care, patients are often expected to accept uncertainty over their own bodies for years, even decades. And that burden is intensified when clinicians withdraw emotionally the moment a treatment doesn’t work.
The patient-clinician relationship has very real ramifications for patient well-being:
“The hope provided by physician validation was the most crucial thing for patients living with chronic illness: with this, patients felt motivated to self-manage their health via lifestyle improvements, adherence to treatment, appropriate consumption of health care services and self-education.” (Gertsman, 2023)
This focus group study also discovered that even small expressions of physician doubt can damage a patient’s confidence.
That’s what I felt in that follow-up appointment—the subtle cues of disbelief. Even the lack of eye contact can say: “I don’t know what to do with you anymore.”
For chronically ill patients, these cues aren’t minor. They’re devastating. Over time, they accumulate into what many call healthcare trauma. It’s a sense of desperation, hypervigilance, and emotional wounding that builds up from being passed off, dismissed, or covertly abandoned.
Even for me, a veterinarian by training, the vulnerability of being a patient was unlike anything I’d known. Not only do you have to fight a disease, you have to fight to be believed.
The Pressure to Fix — and the Aftermath When You Can’t
Physicians are trained to fix. It’s written into our ethos, our training, and our oaths. But we’re not taught what to do when fixing isn’t possible…
And so we distance ourselves from the patient and emotionally retreat. Maybe to protect them from being let down, or maybe to protect ourselves.
But patients don’t need certainty, even if they ask for it. They need a compassionate professional who doesn’t glaze over with apathy.
That’s the real skillset of clinical empathy. Not solving everything, but staying present when there’s nothing left to solve.
Believe it or not, your presence is part of the treatment. Your curiosity, tone, posture, and word choices—these shape whether a patient feels safe or embarrassed, accompanied or all alone.
In a February 2025 episode of FRIED. The Burnout Podcast, host Cait Donovan and psychiatrist Dr. Jessi Gold explored how essential it is for physicians experiencing burnout to feel understood. Understanding opens the door to emotional connection, a key ingredient in healing for both patient and provider. The same applies to individuals with invisible illnesses: curiosity leads to understanding, and understanding allows for deeper empathy.
Practicing Clinical Empathy When Progress Stalls
When your patients aren’t getting better, here’s what empathy can sound like in clinical practice:
“I know we hoped this would help. I’m disappointed too, but I’m still with you.”
“This may not be a straightforward path. That doesn’t mean you’re failing somehow.”
“I don’t have a new plan for you today. But I’m not going anywhere.”
Thoughtfully chosen words, sustained eye contact, and open body language signal trust and safety. And this is more life-saving than you know; sometimes the only thing more painful than the ups and downs of a chronic condition is a healthcare team that doesn’t express empathy.
A New Model of Care: Presence as Partnership
I’ve also known what it feels like to be believed.
My current primary provider is a nurse practitioner. When we first met, I asked, “Do you believe ME/CFS is real?” She said yes. I told her I mostly manage it myself. We reviewed my management program, including a discussion about what supplements I was taking. Then she added gently, “If it ever gets too painful or you feel too low, I’m here. We’ll figure something out.”
In that moment, she went beyond standard medicine and offered me guardrails. This emotional containment reminded me that even though I can manage on my own, I have genuine support if I ever do fall.
Curiosity Is Clinical Currency
When the roadmap disappears, many clinicians freeze or pass off the case like a hot potato. But this is exactly when your curiosity becomes most powerful!
Not knowing is not a failure. This is your invitation to settle into the uncomfortable. To listen, ask questions, and wonder. To open your mind to possibilities and undiscovered outcomes, like you’re a med student again.
Curiosity can sound like this:
“Tell me what’s felt manageable this week.”
“What’s helped you cope lately, even just a little?”
“Can I check in on how this is affecting your mental health?”
Getting the ‘right’ answers to these questions doesn’t matter. The point is to build a connection and keep your mind engaged with the human across from you.
As Drs. Nick and Mike Larochelle write in Bowdoin Magazine: “Uncertainty, rather than straining the relationship with our patients, often draws us closer.”
Physician Burnout & the Empathy Unlock
Physicians are people, too. Many treating complex chronic illnesses are burned out themselves. They’re exhausted by unsupportive systems, unrealistic caseloads, and a constant mismatch between their training and what reality demands.
They want to be believed, supported, and given tools and time to do their work well. And here’s the irony: so do their patients.
Both parties are navigating medical systems not designed to support complexity.
Recovery begins when clinicians respond to patients the way they wish to be treated: with curiosity, validation, and presence. This is a symbiotic relationship that requires a proactive behavioral shift on both sides.
Ask yourself: How would I want to be treated in this moment?
Staying is the work.
In medicine, we talk about innovation, metrics, and health outcomes. But when it comes to chronic, invisible illness that doesn’t follow a predictable pattern, it’s a radical act just to stay present.
You may be the first person a patient feels safe enough to be honest with. You may be the only person who’s ever truly believed them. Your words, tone, posture, and presence hold weight.
And when your patients aren’t getting better, or sometimes getting worse, don’t assume there’s nothing you can do. Because you can offer this rare gift: a steady presence in the uncertainty.
“Even here, I’m still with you.”
