Long COVID has become a stress test for modern healthcare systems. Affecting multiple organ systems at once, it defies highly specialized, compartmentalized models of care. For people living with Long COVID, the problem is not simply clinical complexity – it is institutional design.
In a qualitative study of people seeking Long COVID care in Baltimore, Maryland, we found patients repeatedly encountered a health system organized around boundaries that did not reflect their lived experience of illness. Many described hearing some version of the same message: This problem falls outside my scope.
That refrain, often expressed as “that’s not my silo,” exposes a structural mismatch between how health systems are organized and how complex, chronic conditions actually unfold.
Coordination cannot remain an informal expectation placed on patients. It must become a core function of care – designed, resourced, and governed accordingly.
To bring health systems and conditions like Long COVID into alignment, coordination across specialties must be foundational, rather than secondary. Part of that task is implementation: Health systems can adopt a set of approaches evenly, so no patient falls through the cracks.
But perhaps a greater part of the task is conceptual. The fragmentation that patients with multisystem conditions experience can no longer be dismissed as a personal obstacle they must endure. Instead, we need to start thinking of fragmentation as a core governance problem for health systems to solve.
Fragmentation Is Not a Failure of Effort — It Is a Failure of Design
Participants in our study commonly cycled between cardiology, neurology, pulmonology, and rehabilitation, with little coordination across visits. Each clinician focused appropriately on ruling out problems within their specialty. But when tests came back “normal,” care often stalled.
From the patient perspective, this experience felt less like a comprehensive evaluation and more like being passed along a chain with no clear endpoint. Multisystem illness was treated as a series of disconnected complaints rather than as a whole-person condition.
Crucially, this fragmentation should not be understood as a failure of individual clinicians. It reflects how accountability is structured. No one specialty, clinic, or provider is responsible for integrating care across domains. Coordination is treated as optional rather than essential, and when it breaks down, patients are expected to absorb the work.
When Systems Fragment, Patients Become the Infrastructure
People with Long COVID described managing referrals, scheduling appointments, tracking test results, and relaying information between providers, often while coping with severe fatigue and cognitive impairment. Tasks that might appear routine became overwhelming. Several participants described care management as a full-time job; others delayed or abandoned care altogether, not because symptoms resolved, but because navigating the system required more capacity than they had.
The fact that some patients quietly quit dealing with their illness is a policy-relevant insight. Health systems tacitly assume that patients can act as their own care coordinators. That assumption collapses when illness itself limits cognitive, physical, and emotional bandwidth.
Fragmentation thus produces inequity by design: Those with fewer resources, less energy, or less institutional knowledge bear the greatest burden. Fragmentation also increases health-system costs through duplicated services, delayed management, and inefficient use of specialty care.
Diagnosis as a Gatekeeper to Legitimacy
For many participants, receiving a Long COVID diagnosis marked a turning point. Once the condition had a name, providers were more likely to engage, coordinate, and offer referrals. Diagnosis functioned not only as a clinical tool, but as a form of legitimacy within the system.
At the same time, obtaining that diagnosis was often difficult. Participants, particularly women, described having physical symptoms dismissed or reframed as anxiety or depression. Their experiences highlight how diagnostic uncertainty is not neutral. It shapes who is believed, who gains access to care pathways, and whose suffering is recognized as real.
What Kind of Solutions Could Help?
Long COVID care will not be fixed by adding more specialties or tests. The problem is not insufficient expertise; it is insufficient integration. What patients described needing, and what systems currently lack, is a locus of responsibility for coordination.
Long COVID is not just a clinical challenge. It is a policy signal.
Policy-relevant solutions could include:
- Standardize Long COVID definitions and care pathways to reduce diagnostic delays and confusion at entry points, with primary care explicitly positioned and resourced as the first point of contact.
- Strengthen referral and information-sharing infrastructure through vetted referral lists and interoperable data systems that improve communication across specialties.
- Institutionalize multidisciplinary case conferencing to clarify roles, support shared decision-making, and prevent responsibility for coordination from diffusing across silos.
- Invest in patient navigators or advocates to assume responsibility for scheduling, follow-up, and care integration, reducing administrative and cognitive burdens on patients experiencing fatigue or brain fog.
- Expand telehealth, bundled appointments, and same-day procedures to minimize the physical and cognitive toll of repeated visits, which can be especially overwhelming for patients with severe or fluctuating symptoms.
- Extend care beyond hospital settings by partnering with community health workers and community-based organizations to bridge equity gaps and provide culturally tailored navigation for underserved populations disproportionately affected by Long COVID.
Why This Matters Beyond Long COVID
While our study focuses on Long COVID, the implications are broader. As populations age and chronic, multisystem conditions become more common, health systems built around narrow specialization will struggle to keep pace. Long COVID makes these structural weaknesses visible.
Addressing them requires shifting responsibility within healthcare systems. Coordination cannot remain an informal expectation placed on patients. It must become a core function of care – designed, resourced, and governed accordingly.
Long COVID is not just a clinical challenge. It is a policy signal. The question is whether systems will respond by reinforcing silos or by finally building the connective tissue patients have been forced to supply themselves.
This piece is based on a qualitative research study of patient experiences with Long COVID care published in SSM – Qualitative Research in Health: “That’s not my silo”: Navigating fragmented Long COVID care in the Mid-Atlantic United States.
