Understanding the experience of breathlessness

2026: ERS Barcelona

Andningsvägar

DELA MED SIG

Extreme breathlessness is not a shared experience

Professor of Philosophy Havi Carel provided a philosophical perspective on breathlessness, and how it is it impacts the human existence, identity and relationship to the world. Although breathlessness is a universal experience, pathological breathlessness is not: it is an existential threat, unrelateable for those who have not experienced it. The experience is inexpressible, not only due to lack of breath but also words to describe the loss of control and trauma. Labelling it “breathlessness” may lead to communication barriers because the same word is used for profoundly different experiences.¹ As breathlessness also holds you back from speaking up and engaging socially, this adds to the invisibity of breathlessness.    

Breathlessness is a subjective experience with objective consequences

Slavica Kochovska explained that one in eight (12.5%) people live with breathlessness, but the prevalence is higher in people with underlying conditions: one in three (37.5%) lives with breathlessness.² Breathlessness is a frightening and very personal experience. It has profound effect on patients, as even mild symptoms (as measured by mMRC*) has a limiting effect on mobililty, participation, managing life activities and self care. The higher the symptom score, the more disabeling the breathlessness becomes. ³ It also makes the world smaller: leaving your front door becomes increasingly difficult with breathlessness.  

* (modified Medical Research Council): A 5-point scale (0-4) measuring the impact of breathlessness on daily activities.    

Worrying, but not seeking help

Even with limiting breathlessness that they worry about, patients do not necessarily seek medical advice. Breathlessness can go undiscussed in consultations, potentially delaying a diagnosis of the cause behind the symptom. Population studies reveal that 26% of patients with clinically important breathlessness (MMRC ≥2) completely miss out on conversations about their symptom because neither they nor their clinician raise it. This invisibility persists even among those with severe breathlessness.⁴

The impact of breathlessness extends beyond patients to significantly affect family caregivers, who experience physical exhaustion, psychological distress, social isolation, and constant fear. Healthcare providers often overlook this secondary impact.⁵  

Clinicians more likely to address pain than breathlessness

When presented with hypothetical case scenarios on chronic breathlessness and chronic pain, surveyd physicians were more likely to recognize the need for further treatment, offer symptomatic treatment, or provide opioids for pain, than for breathlessness. This disparity highlights the need for improved clinical recognition and management of chronic breathlessness.⁶  

Responsive clinicians make a significant difference

Clinicians who validate breathlessness, help patients understand it’s manageable, and support engaged coping strategies can significantly improve quality of lifeas shown by the ’Breathing Space’ framework’. Even brief validation and guidance toward resources can transform patient outcomes. ⁵    

Make space for discussions

When clinicians initiate breathlessness conversations, fewer topics are discussed, treatment expectations are largely absent, and patients are less open about their symptoms. Patient-initiated conversations are broader and more productive, suggesting clinicians should create space for patient-led dialogue. ⁴

Pekka Ojasala
Medical Advisor, Chiesi Nordic