Navigating the rollercoaster of chronic illness is a unique and often isolating experience. It is a journey that can be filled with uncertainties, regular hospital appointments, and a never-ending quest for a return to normal. This is so often the reality for individuals with chronic respiratory diseases, such as aspergillosis. 

In this post,  Evelyn embarks on a reflective journey, chronicling the evolution of her illness from childhood diagnosis to the present day, a timeline characterised by bilateral severe cystic bronchiectasis complicated by the colonisation of aspergillus and the less common scedosporium. For Evelyn, keeping a diary, noting symptoms, infections, and treatment strategies has been a way to make sense of the unpredictability of her health. This habit, instilled years ago by a forward-thinking consultant, transcends its practical utility, evolving into a critical tool for patient empowerment and self-advocacy.

When searching the web for help refining her symptom diary, Evelyn came across a paper titled: The Bronchiectasis Exacerbation Diary. This paper  was a revelation of sorts. It cast light on often-overlooked aspects of the patient-experience and validated the often inexplicable symptoms that Evelyn experiences. It is evidence as to the power of patient-centered research and the impact of seeing lived experience  acknowledged in scientific literature. 

Evelyn’s below reflection is a reminder of the broader implications of chronic illness on daily life and the need to adapt to navigate daily life. 

As a result of a conversation with Lauren recently concerning the use of a symptom diary/journal, I came across a paper published on the internet, ‘The Bronchiectasis Exacerbation Diary’. Diagnosed in childhood with a chronic respiratory disease which has progressed throughout my life, I have bilateral severe cystic bronchiectasis with colonisation of aspergillus and the rarer fungi, scedosporium.

I have long been accustomed to keeping notes of symptoms/infections/treatment, having been encouraged to do so, many years ago, by a consultant for ease of reference at appointments.  He emphasised treating infections should be dependent on the result of a sputum culture and sensitivity and not on a “Russian roulette” approach, as he called broad spectrum antibiotics; without knowing what type of infection was involved.  Thankfully, my GP was co-operative, as at that time cultures were not routine.  (I had dreaded acquiring a reputation as a bolshie patient!)

Reading the above mentioned paper was a revelation.  It brought together the range of symptoms I experience daily, even some symptoms I felt were not appropriate to mention at clinic consultations.  Moreover, I felt validated.

There have been occasions, albeit rarely, when I have doubted myself, none more so than when one clinician inferred I was psychosomatic.  This was my lowest point.  Thankfully, following this I was referred to a respiratory physician at Wythenshawe Hospital who, when a culture showed aspergillus, transferred me to Professor Denning’s care; as they say “every cloud has a silver lining”.  Aspergillus had previously been found in a culture at another hospital in 1995/6, but not treated in the way it was at Wythenshawe.

Not only everyday symptoms were considered in the article, but also the immediate impact patients’ experience with daily living.  Also, in a wider sense, the general impacts on our lives and the adjustments we all face in coping – all of which I can so easily identify with in my own life.

I felt so encouraged reading the paper as despite all of the various types of patient information leaflets I have read through the years, none were so comprehensive.