Abstract
This patient perspective article advances observation as an intentional, rigorous form of clinical care rather than a passive absence of intervention. The recommendations arise from the lived experience of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), informed by clinical training as a mobile equine veterinarian. Over a nine-year diagnostic course, early clinical curiosity gave way to prolonged skepticism in the context of normal examinations and laboratory findings, ultimately shifting responsibility for daily functioning and symptom interpretation onto the patient. Across repeated encounters, subtle but consistent indicators of impaired energy regulation and exertional intolerance were present yet remained clinically unintegrated. When viewed longitudinally, these findings revealed a coherent physiological pattern that was not apparent at any single time point. Modern medical training emphasizes action. However complex, relapsing, and poorly understood conditions often demand sustained clinical attention before diagnostic clarity emerges. In the absence of immediate abnormalities, discomfort with uncertainty may prompt premature intervention or disengagement, eroding trust and obscuring evolving signals. Structured observation offers an alternative. As a clinical strategy, it preserves diagnostic curiosity, strengthens the physician-patient relationship, and allows for the observation of physiology without confounding influences. Such observation can yield meaningful insight and guide precise, compassionate care.
Keywords
Introduction
My perspective is shaped by a lifelong commitment to scientific rigor, cultivated through veterinary medical training and reinforced by family life centered on data (my father's research connecting Epstein–Barr Virus and Infectious Mononucleosis 1 shaped my foundational view of medicine), precision, and biological mechanisms. I value clear, cause-and-effect relationships and respect medicine's drive toward diagnosis and treatment. As a patient, I wanted answers that followed this same logic.
Veterinary practice taught me the satisfaction of identifying a problem and providing a solution. It also taught me patience. Animals reveal their illnesses gradually, through patterns that only emerge with careful watching. Observation, when practiced deliberately, often precedes effective intervention.
Outside of medicine, gardening deepened this understanding. In my childhood home, a stand of red tulips has emerged every spring for more than 70 years. Some years produce only leaves; others yield abundant blooms. No fertilizer, supplemental watering, or soil manipulation has been applied. An amazing feat given that the average tulip has a life expectancy of 3 to 5 years. 2 The bulbs had established a rhythm, a balance, allowing them to continue to thrive. Metabolically, they clearly bloomed when the bulbs had enough energy; otherwise, they produced leaves to capture photosynthetic energy to make future blooms possible. Careful observation prompted me to wonder what it is that we can learn from the resilience and vitality of these tulips. What becomes possible when living systems are allowed to adapt without interference?
Medical literature offers a powerful parallel in Human Immunodeficiency Virus “long-term non-progressors”—patients who maintained immune equilibrium for years without antiretroviral therapy. 3 Observation of these individuals, rather than immediate intervention, revealed distinct physiological adaptations and added the concept of “deep latency” 4 to the traditional, acute-latency-active disease arc of host response. Deep latency, like the tulips’ energetic equilibrium, is a stable state, allowing a population to proceed in ways not thought to be possible.
As viral illnesses and postinfectious syndromes increasingly defy short, predictable courses, clinicians encounter more patients whose recoveries do not follow linear trajectories. Observation, when treated as an intentional, clinical strategy, allows practitioners to recognize atypical recovery patterns, preserve diagnostic windows, and build durable partnerships with patients navigating uncertainty.
Personal Perspective
Observation has taught me as much as medicine ever did. That truth became painfully clear when I became a patient.
The Initial Illness
In the spring of 2009, I developed a headache and sore throat while driving home from a routine veterinary visit. Muscle pain in both quadriceps escalated, prompting an emergency department visit. In the emergency room, I developed a low-grade fever, and blood tests revealed a low white count, both consistent with a viral infection, but the muscle enzyme results were normal. I was discharged with a working diagnosis of influenza.
By Day 3, the fever resolved, yet fatigue and muscle pain persisted. Eighteen days later, I saw an infectious disease specialist to evaluate occupational exposures. They prescribed doxycycline for a potential Lyme infection, the first of 3 empirical drug trials to rule out various conditions. A neurologist initiated the last 2, high-dose steroids and then gabapentin to respectively rule out fasciitis and neuralgia. None of them shifted my symptoms.
Years of Evaluation
Specialty consultations continued into the 3rd year, each concluding without follow-up once major pathologies were excluded. After repeated dead ends, I stopped seeking care for 5 years. During this break, I knew I had seen enough to start referring to my condition as Chronic Fatigue Syndrome (CFS). Terminology around this condition has changed over the years. Current recommendation is to use a combined term, Myalgic Encephalomyelitis (ME)/CFS, with ME being the disease, and chronic fatigue the symptom. 5
During year 8 of illness, I went to a chronic fatigue specialist. Previsit blood work revealed a low CD57 (cluster of differentiation 57) lymphocyte count that she interpreted as a possible chronic Lyme infection. During the visit, the physician and I sat at a round table together. She made eye contact, shared handouts, and spoke with energy and optimism. We began a rotating protocol of antibiotics and monthly labs, tracking that CD57 count as if it were the key to my illness. But after 7 months, it had not budged. I had not 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 will get worse.” But I did not. Two years later, when I returned to her office for routine care, she measured my CD57. While the count was still low, I had not gotten worse.
What had changed was her demeanor. She sat behind her desk, far away and disengaged. There was no curiosity about why I had not declined. No next step. It seemed that because I did not fit into her treatment plan, she no longer knew what to do with me. Further, she did not see value in observing me. But observation is exactly what I needed.
Living Without Medical Partnership
After that encounter, I disengaged from medical care. Despite extensive evaluations, no clinician had assembled the full narrative of my illness. Normal test results, combined with systemic pressure to deliver diagnoses efficiently, led many physicians to believe my symptoms were psychosomatic.
Before illness, I was an equine veterinarian running a solo practice, physically active, and professionally respected. While I certainly needed therapy to help with the sudden loss of my active self-identity, any curiosity from physicians as to what else might be going on was gone. Curiosity that might have allowed them to discover that in addition to my muscle weakness, I had become intolerant of noise, had more frequent episodes of irritability (accompanied by raising my voice), and had to take a 2-hour nap after a short run.
Practical Recommendations
My experience reflects a broader challenge in modern medicine. Clinical training, including my own, emphasizes fixing and decisive action. Intervention becomes instinctual. Action is satisfying and serves patients well when diagnoses and treatment pathways are clear. Difficulty arises when patients present with symptoms that evolve slowly, fluctuate, or resist categorization. I was this patient. With each visit, my list of diagnostic rule-outs diminished, filling my chart with increasing amounts of uncertainty, not answers.
Without answers, the linear, clinical conveyor belt dependent on a diagnosis and treatment plan comes to a frustrating halt. Despite the mounting levels of nonclinical duties and limited time, the expectation is for physicians to develop an instant plan during a routine office visit, which is not enough time to capture the nuances often key to a chronic patient's puzzle. Physicians do not get the satisfaction of helping their patients, and the patients may undergo unnecessary tests or procedures in search of the elusive answer. 6
I witnessed moments of curiosity, but I also saw it fade. The push to fix still overrides, even for physicians with specialty working with chronic, unpredictable illnesses. So, how to introduce or maintain flexibility in the diagnostic process which supports curiosity? Observation, as well as the intentional management of ambiguity and uncertainty, offers a way forward. From both sides of the exam room, I have learned that how one experiences, manages, or avoids uncertainty quietly shapes diagnostic thinking, patient trust, and clinical outcomes.
The following recommendations draw on my experience as a clinician, a long-term patient, and a certified Buoyant Way® coach. 7 They are intended to make uncertainty visible and manageable by increasing awareness, outlining preparatory tools, and defining clinical action strategies for receiving patient histories and valuing diverse perspectives. They also establish observation as an active intervention and offer guidance for supporting patients when diagnoses remain elusive.
Reflective Awareness: Recognizing Responses to Uncertainty
Uncertainty exerts a powerful influence on clinical behavior. Greater awareness of its internal manifestations can help physicians respond more intentionally.
Strategy: Use the Following Prompts for 30-Min Journaling Sessions
Physicians and medical students can become grounded in a comprehensive understanding of specifically how uncertainty shows up in their behavior and habits (both tacitly and explicitly) by writing for 30 min each day (over the course of a week) in response to prompts. Journaling sessions create awareness which protects curiosity under pressure and prevents premature closure. 8
Day 1
Where on a continuum of 1–10 (10 being highest) is your level of uncertainty right now?
What is that uncertainty stemming from?
Where on a continuum of 1 to 10 (10 being highest) is your level of tolerance of that uncertainty?
Day 2
When a symptom does not fit the pattern or the data, what is your first response (eg, fear, disconnection, or curiosity)? Can you identify how your thinking is contributing to that response? Explain.
Day 3
When objective data (eg, labs, imaging) are normal, but symptoms persist, how does uncertainty affect your ability to create a working plan with the patient?
Day 4
Do patient emotions—distress, urgency, desperation—shift your diagnostic reasoning? Do they pull you toward premature closure, excessive reassurance, or reflexive referral?
Day 5
When fatigue is the presenting complaint, does that shape a narrative about what you think about the patient? Explain.
Days 6 and 7
What do you say to yourself when you are unable to diagnosis a patient and provide them with clear treatment options? How might that self-talk influence how you work with a patient?
Intentional Preparation: Designing for and Championing Different Perspectives
Create a strategy for receiving patient histories as well as patient-provided information. Determine how you will respond when such information may disrupt your usual clinical flow.
Determine how to account for diagnostic timing windows. Create systems to ensure that critical labs or studies are ordered early enough to be meaningful, rather than appearing “normal” because the window has passed or obscured with therapeutic variables.
Plan follow-up visits with the explicit goal of gaining new, observational perspectives; doing so reframes time as an active diagnostic tool rather than a delay.
Clinical Application: Observation as an Active Intervention
Observation requires structure. Create a parallel plan that addresses immediate patient concerns while protecting diagnostic integrity. This may include scheduled reassessments, symptom tracking, or telehealth visits conducted at different times of day to capture fluctuating features.
Actively seek disconfirming information to expand understanding beyond initial impressions. Observing how patients adapt to daily demands often reveals functional constraints invisible during brief in-office examinations. Further, being observed over time, without pressure to fit a predefined model, preserves trust and generates meaningful data. Observation, when named and valued, becomes a shared endeavor rather than a passive absence of action.
Supporting Patients When Diagnosis Remains Elusive
Patients benefit from explicit discussion of ambiguity. Naming uncertainty reduces isolation and reinforces partnership. Further, physicians who share their own experiences with and mindful practices of handling uncertainty can educate patients on how to transmute uncertainty into intentional, confident, and proactive behaviors that positively impact health. Framing observation as purposeful reassures patients that care continues, even without immediate answers.
Encouraging patients to document symptoms, recovery patterns, and environmental triggers transforms lived experience into clinical information. This collaboration empowers patients, sustains engagement, and prevents erosion of trust.
Conclusion
Physicians are trained to diagnose and treat efficiently, often succeeding within a single visit. Contemporary illnesses that relapse, remit, or evolve slowly challenge this model and foster uncertainty. Patients may appear entirely well during appointments, offering few clues to underlying dysfunction (further exacerbating ambiguity). Uncertainty profoundly shapes how clinicians act. By becoming aware of its internal effects, physicians can approach patient care more mindfully and intentionally.
Observation, practiced deliberately, allows clinicians to witness adaptive strategies, intermittent symptoms, and daily life constraints that influence treatment feasibility. These insights can guide diagnosis, inform management, or clarify when supportive care is most appropriate.
Further, observation sustains the physician-patient relationship. It preserves curiosity, generates data, and validates the patient's experience. When intervention is deferred thoughtfully rather than avoided, observation becomes a form of care that strengthens both clinical reasoning and human connection.
