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 latest pulmonary infection issue featured a patient voice article by Tanja Hedberg, who shared her experience of living with primary ciliary dyskinesia (PCD) and recurrent pulmonary infections. In this Q&A, Tanja reflects on what it meant to feature in Breathe, and the value of patient experience in improving understanding and care for rare lung conditions.
My name is Tanja. I am 48 years old and live in northern Sweden with my husband and our dog. Although Swedish, my roots are Finnish and I spent much of my childhood in Finnish Lapland, growing up bilingual in Swedish and Finnish.
I am on long-term sick leave, but my background is in behavioural science and psychology, mainly health psychology. My focus has been on psychological processes related to health, illness and healthcare, and the interactions with biological, social and structural factors.
I live with PCD, a rare genetic condition that can impact several parts of the body, including lungs, sinuses, ears and sometimes fertility. All my life, I have engaged in daily treatment and self-management and faced repeated airway infections. Early on, I became colonised by Pseudomonas aeruginosa, which causes difficult infections that now require uninterrupted antibiotic treatment.
My condition has affected all parts of my life, including facing childlessness.
Long-term conditions, like PCD, impact not only physical health, but also emotional wellbeing, social life and sense of self. These are areas I hope to raise awareness of.
Throughout the years, I was privileged to engage in patient advocacy groups and to volunteer as mental health support in PCD and cystic fibrosis (CF) communities. I came to understand how closely psychological and emotional aspects of long-term lung conditions and pulmonary infections are linked to physical effects.
However, these aspects are often not visible in healthcare. This is not necessarily due to neglect, but often because of broader systemic factors.
By sharing my story, I wanted to highlight experiences that many people recognise, even if they are not exactly the same. These include the undiagnosed journey, disruptions and shifts imposed by long-term illness, and the importance of patient community and supportive healthcare teams.
Firstly, I should emphasise that diagnosing PCD is complex, even with modern tools. Although ideal, early diagnosis is not always possible.
Before diagnosis, I felt my condition was often misunderstood. Because my symptoms overlapped with those of CF, I was treated using CF guidelines. While it was clinically reasonable, it did not fully match the requirements and realities of my condition.
For example, generic airway clearance routines were expected to work the same way for me but did not. Rather than exploring a personalised approach, it seemed like the assumption was that I was doing something wrong. The possible role of a different underlying condition was not recognised.
Even though I followed treatment carefully during childhood and thereafter, infections persisted. Without a clear explanation, I often felt blamed for the infections.
Receiving a diagnosis was transformative. Being able to name my condition and explain it, was a major shift in all areas of my life. Importantly, it restored trust in myself. Understanding the physiological basis of my symptoms brought clarity, validation and peace after decades of uncertainty and feeling unheard.
Although much of PCD, including my specific variant CCDC39, is still unknown, research has validated points I raised for years. This has strengthened my ability to advocate for myself and question assumptions.
At the time of diagnosis, I received very little information and had to educate myself. This reflects a broader issue, particularly in rare diseases, where knowledge is limited. Patients and carers often carry the responsibility of educating themselves and informing healthcare providers. This dual role, patient and informal educator, can be empowering but also exhausting.
Having lived with a demanding condition from birth means it has always been part of my life. I have developed many parts of myself beyond my illness, but it still influences my choices and daily life. It requires constant adjustment.
In my younger years, I often felt shame and wanted to hide my condition. I also experienced anger and sadness over its impact and the losses it brought. I felt different and largely dealt with the emotional impacts alone.
In my early twenties, I faced major losses and life changes, both related and unrelated to my illness. Worsening infections, treatments and discussions about lung transplantation caused severe stress. I became extremely rigid with self-management, hoping to regain control, but found illness dominating my life and identity.
The prolonged stress caused anxiety and a few panic-like attacks, ultimately leading to a shift from coping alone to seeking support. I consulted a psychologist, who assured me my reactions were normal responses to highly stressful and abnormal circumstances. I then began seeing a lung clinic counsellor, who helped me process the challenges.
My relationship with my condition continues to evolve. Today I coexist with it peacefully and approach challenges with greater self-compassion. When feelings such as disappointment or sadness emerge, I recognise them as natural responses to living with a demanding chronic condition. They are part of the experience of life and acknowledging them enables me to face my situation with acceptance and resilience.
Sometimes I reflect on how the illness I once saw as my greatest shame and weakness has become something I speak about openly. My younger self would be surprised!
I hope they feel less alone. While experiences are unique, many of us share common ground.
The article reflects a lifelong viewpoint, spanning nearly fifty years, although perspectives beyond that would also be valuable to explore. Living with chronic illness is an ongoing, dynamic process that can extend across life phases.
It is normal not to always feel on top of things, as illness can sometimes take over. While there are real losses and limitations, there are also empowering resources, including patient communities, supportive healthcare teams and personal resilience.
Alongside challenges such as worsening health, infections and demanding treatments, moments of joy and contentment can still exist.
I hope healthcare professionals recognise the uncertainty that remains within medical knowledge, particularly in rare conditions, like PCD. Patients’ lived experiences are valuable, as they may notice patterns before they are fully understood in research.
While evidence-based practice is crucial, it is important to remain humble and open to what we still do not know. Listening to and validating patients before attributing outcomes to adherence may prevent premature conclusions and preserve trust.
Even when there are no clear answers, openness and honesty can help patients feel understood and supported during long periods of uncertainty.
For me, quality of life means living a meaningful life alongside illness, not only enduring it.
I have noticed avoidance or withdrawal may feel protective, but they often reduce life more than symptoms themselves. What matters is staying engaged in what I value and where I find purpose, within my capacity.
I find quality of life in simple things, especially during challenging periods – enjoying a nice meal, time with loved ones or listening to audiobooks – often related to psychology, which remains an important part of who I am. Time in nature and my dog’s companionship bring deepest sense of gratitude.
Encouragingly, growing collaboration between patients, researchers and clinicians is shaping research priorities and clinical care that reflect lived experiences and needs. This ensures that key areas are not unintentionally overlooked due to unasked questions.
One important aspect of care is the recognition and management of pulmonary exacerbations. Some patients notice subtle behavioural or emotional changes as early signs. These periods are often linked to increased psychological distress and vulnerability as symptoms progress and self-advocacy becomes necessary in healthcare interactions.
While these experiences are valid, they are rarely discussed. Greater inclusion of patient-reported insights may help inform research and clinical assessment, supporting earlier recognition and more responsive, compassionate care.
Read Tanja’s article in ERS Breathe: Psychological and emotional dimensions of living with lifelong recurrent pulmonary infections
