Little is known about the impact of living with pulmonary hypertension. This paper reports data exploring the experience of living with pulmonary hypertension. Qualitative semi-structured one-to-one interviews were conducted in participant’s homes and used to understand their experiences of living with pulmonary hypertension. Thematic analysis was used to identify codes and generate themes from the interview data. The identification of initial codes was conducted independently by the first author and checked by the second. Thirty patients recruited through the Pulmonary Hypertension Descriptions of living with pulmonary hypertension are presented under five themes that centre on the invisibility of PH and its complex treatment are presented: i) Living with a hidden illness; ii) Being on a symptomology rollercoaster; iii) expectations from treatments; iv) treatment burden; and v) awareness of financial burden of treatments. Key findings included daily challenges of living with a rare condition that is largely ‘hidden’ and its related complex treatment regimes. People with pulmonary hypertension would benefit if more healthcare professionals, as well as family and friends, would validate their condition and provide them with appropriate support.