Lisa McNeil on sharing her aspergillosis story and raising awareness in Breathe

About Breathe and the patient voice 

Breathe is the clinical educational publication of the European Respiratory Society (ERS). Published quarterly and fully open access, Breathe brings high-quality, peer-reviewed educational content to a global respiratory audience. Its articles cover topics including basic science to best clinical practice and include reviews, case studies, editorials, self-tutorial material, Early Career Member activities and literature highlights. 

Alongside clinical and scientific content, Breathe actively invites patients to contribute patient voice articles linked to each issue’s theme. These articles highlight lived experience and aim to support greater understanding, awareness and partnership between patients and healthcare professionals. 

The pulmonary infection issue featured a patient voice article by Lisa McNeil, who shared her experience of living with aspergillosis. In this Q&A, Lisa reflects on what it meant to feature in Breathe, why patient involvement in education matters and how awareness and collaboration can improve diagnosis and patient outcomes. 

Can you tell us a little about your journey with aspergillosis and bronchiectasis and what prompted you to share your story in Breathe? 

My journey with aspergillosis and bronchiectasis has been long, complicated, and at times, overwhelming. Like many people, I lived with worsening symptoms for years before receiving a clear diagnosis. When aspergillosis was eventually identified, I realised just how little awareness there was of the condition, even among healthcare professionals. 

I wanted to share my story in Breathe because patients deserve to feel seen and supported. If telling my experience helps even one clinician stop and think, “Could this be aspergillosis?” then it is worth it. Raising awareness is the first step to improving diagnosis and care. 

You mention that little is known about aspergillosis. Can you tell us more about what that was like for you when you were first diagnosed? 

When I was first diagnosed, I felt very alone. Every appointment outside of the National Aspergillosis Centre seemed to involve explaining the condition to someone new and often I knew more about aspergillosis than the person treating me. It is frightening to be told you have a rare or unfamiliar disease, but even more frightening when the people you rely on for help seem unsure themselves. 

It left me feeling uncertain and anxious and responsible for managing something I had not been prepared for. That lack of knowledge is what drives me to keep speaking out about the condition. 

How did you approach educating yourself and piecing together your own care? Were there particular resources or moments in the journey that were especially important? 

My education was a patchwork built from necessity, shaped by pulling together whatever information and support I could find. I did read some clinical papers but, at first, these just seemed so complicated to me, so I joined patient groups. I asked endless questions and learned from others who were ahead of me in their journey. 

Two things were especially important: 

• Connecting with other patients, initially through the Aspergillosis Trust Support Group and more recently through the National Aspergillosis Centre CARES team and the ELF Patient Advisory Group (PAG). Hearing real experiences gave me clarity and confidence. 

• Finding healthcare professionals who listened. Once I had a team willing to learn alongside me, everything changed. It became a partnership rather than a battle. 

What challenges did you face when communicating with healthcare professionals who were unfamiliar with aspergillosis and how did you navigate those conversations? 

I think the biggest challenge was being taken seriously. When clinicians do not recognise a condition, it can be dismissed as anxiety, asthma or “just an infection.” I had to advocate for myself constantly, often bringing evidence, sharing guidelines and asking directly for referrals, tests and specific medication. 

I learned to be calm and persistent. And I have become comfortable saying, “I understand this is not common, but it is important for my health, can we look at this together?” 

Thinking of the Aspergillosis Trust and the ELF Aspergillosis Patient Advisory Group (PAG), what role do patient organisations play in strengthening awareness and education? And what work is most impactful? 

Patient organisations are essential. They amplify voices that would otherwise go unheard and turn lived experience into something powerful. 

Groups like Aspergillosis Trust, the ELF PAG and the National Aspergillosis Centre: 

• Provide accurate, accessible information. 

• Offer peer support, which reduces isolation and builds confidence. 

• Work directly with clinicians and researchers to bridge the knowledge gap. 

• Influence policy and research priorities by sharing real-world patient needs. 

The most impactful work is always the work that centres around patient experience because lived experience reveals gaps that data alone cannot. 

What advice would you give to patients who are navigating complex lung conditions and want to make their voices heard? 

Remember that you do not have to know everything, you just have to know yourself. Your symptoms, your limits, your experiences are valid evidence. 

My advice: 

• Keep records of symptoms, medications and flare-ups. 

• Bring someone with you to appointments if you can, they can often remember things that you cannot, especially if you are feeling poorly or overwhelmed. 

• Ask questions, even if they feel small or insignificant. 

• Do not be afraid to request a second opinion. I did and I believe it saved my life.  

• Join patient groups; you will learn so much and feel less alone. 

Most of all, believe in your right to be heard. Your voice matters.

Now that the article is published, what do you hope healthcare professionals and other readers will take away from your experience? 

I hope they take away the message that aspergillosis deserves attention. Many patients are living with unrecognised symptoms for years, being treated for the wrong condition or told there is nothing wrong. 

If clinicians can develop even a basic awareness, enough to consider aspergillosis earlier, or to pause and listen more closely it could change lives. I also hope readers see the value of partnership between patients and professionals. We are not just recipients of care, we are part of the solution. 

Any final thoughts? 

Only that awareness saves lives. Sharing knowledge, whether through research, clinical practice or patient stories can create a pathway toward earlier diagnosis, better treatments and better outcomes. I am grateful to ELF for giving me the space to share my journey and I hope it encourages more open conversations within respiratory healthcare. 

Read Lisa’s article in ERS Breathe: From a patient’s experience: why healthcare professionals must consider aspergillosis