BARCELONA — Imagine struggling to take a breath. For most people, it is automatic, requiring no thinking at all. But for millions of people living with chronic lung disease worldwide, every single breath can be a struggle, said Tom Bermingham, a patient who was diagnosed with aspergillosis, bronchiectasis, and severe adult-onset asthma in 2022 and a member of the ELF Aspergillosis Patient Advisory Group (PAG) from Wexford, Ireland, speaking at the European Respiratory Society (ERS) 2026 Congress. “Chronic lung disease affects more than the lungs,” he said. “When a person cannot catch their breath, they may panic. That panic and anxiety can lead to exhaustion, and even the fear of coughing, a fit of coughing in public, can be enough to make people withdraw and not go out in public.”

Over time, what begins as a physical pulmonary issue can rapidly escalate into a severe emotional, psychological, and social crisis. Yet modern medicine remains overwhelmingly focused on individual organs, often missing the whole person living with the disease. “When you look at a patient with lung disease, what do you see? Do you see damaged lungs, or do you see a person whose whole life has been damaged by their disease?” Eleni Stamouli, a patient with pulmonary fibrosis and a member of PAG from Greece, asked the audience. “The answer to this question is what makes care truly holistic.” She explained that chronic respiratory disease affects every facet of a patient’s life, from mobility and sleep to employment, independence, self-esteem, and personal relationships. While a patient may require multiple healthcare specialists to cover their medical needs, true holistic care relies on those professionals collaborating seamlessly rather than treating isolated parts of a pathology. “I’m not COPD [chronic obstructive pulmonary disease]. I’m not pulmonary fibrosis. I’m not severe asthma. I’m a patient who happens to have a pulmonary disease,” Stamouli said.

Sometimes holistic care starts with listening, the panel agreed. Questions like, “What worries you the most?” or “How does your disease affect your daily life and that of your family?” reveal things that no CT scan and no blood test can reveal, Stamouli said.

McCormack stressed that Lisa McNeil, a patient who lives with aspergillus bronchitis alongside bronchiectasis and cardiomyopathy, chair of the Aspergillus Trust, and member of the ELF Aspergillosis PAG, emphasized the importance of true holistic care. “For me, holistic care means what matters to me,” McNeil told Medscape Medical News. “It’s not for the doctor to say. It’s about what’s important to you today. What matters to you in this appointment?” she said.

Because patients live with long-term conditions day in and day out, their immediate needs shift over time due to changes in health, family circumstances, or disease progression. While a clinician might interpret worsening symptoms purely as a signal to adjust medication or order another scan, the underlying cause might stem from life circumstances or emotional distress, she said. “If they delve deeper into that, it might become obvious.”

Knowing Who Has the Disease

Ingeborg Farber Vestergaard, PhD, a clinical psychologist in Denmark, part of the leadership of the ERS group of psychologists and behavioral scientists, and member of the ELF mental health working group, said, “When it comes to chronic respiratory illness, it’s equally important to know not only what disease a person has, but what person has this disease.” Patients with identical clinical characteristics can react, think, and feel vastly differently.

Farber Vestergaard referenced the TANDEM study, a large randomized controlled trial conducted in the UK, that found no significant effect on patient outcomes when psychosocial care was incorporated into pulmonary rehabilitation programs. “In clinical care, we tend to think that it’s only when the disease becomes very severe that people start to struggle with the mental aspects. We tend to address all these issues far too late,” she said. In fact, an unpublished survey of 12,000 patients with COPD across five European countries revealed that patients face significant psychosocial impacts from the very beginning of their disease. “It’s something that everyone has to do right from the beginning.”

Farber Vestergaard advocated using Patient-Reported Outcome Measures as conversation starters rather than mere data points. She also urged a focus on increasing meaningful life activities rather than solely aiming for symptom reduction.

Moving From Advice to Active Support

Physical activity and exercise are important components of holistic care for patients with respiratory diseases because the impact of lung disease goes much further than the lungs themselves, said Kira McCormack, PhD, a clinical exercise physiologist from Dublin, Ireland, and project director of the Pulmonary Hypertension Association of Ireland.

McCormack explained that while there is strong evidence supporting pulmonary rehabilitation to improve physical function and quality of life, generic advice fails to address patient anxieties. Patients want to know how to safely get through bad days, manage breathlessness, and return to activities they love. She said fear of exercise or becoming breathless is a very common experience for people with chronic lung disease, often stemming from past experiences. Rather than simply advising patients to “be more active,” clinicians must actively address this fear by providing structured support, education, and confidence-building tools, she said. Addressing fear effectively requires understanding individual patient barriers, teaching safe ways to manage breathlessness on bad days, and helping patients take small, gradual steps so they can safely return to the activities that matter to them.

“We have to make holistic care the standard and not the exception,” Stamouli concluded. “A holistic approach will shift the focus from what happens with your lungs to how your disease affects your life and your well-being, and what matters to you most.”

Bermingham, Stamouli, McNeil, Farber Vestergaard, and McCormack reported no relevant financial relationships.

Manuela Callari is a freelance science journalist specializing in human and planetary health. Her work has been published in The Medical Republic, Rare Disease Advisor, New Scientist, The Guardian, MIT Technology Review, and others.