Reflecting on my first Blog as CEO last month, I am very grateful for the positive feedback from our community. My aim for the Blog is to highlight key issues and trends within cystic fibrosis (CF) in a bite-size and informative manner, and I am pleased that the first Blog resonated with many of you.
This month, I again write down my thoughts to shed light on the intertwining strands of CF and mental health, two worlds that often coincide, creating unseen challenges for our community.
The impact of CF on mental health is profound and multifaceted - individuals often experience a complex interplay of emotional, psychological, and social challenges in addition to their physical symptoms.
The weight of living with a chronic condition
People affected by CF face many battles daily, the scars of which aren’t always visible. The relentless regime of treatments, medications, and hospital visits, coupled with the uncertainty that clouds the future, can cast long shadows on the mental well-being of individuals and families living with CF.
In addition, the risk of cross-infections can lead to social isolation, which can impact social development in children and teenagers and lead to feelings of loneliness in adults.
Research has also found that people with CF, and parents who care for children with CF, are more likely to experience depression than people in the general community.1
The global COVID-19 pandemic had a significant impact on people with chronic conditions due to the increased risks and the need for stringent protective measures. The additional stress and effects of isolation further compounded mental health concerns for many, including those with CF.
Recognition of the link between mental health and CF
In Australia, and globally, there is growing recognition about the interconnectedness of chronic physical health conditions such as CF and mental health. It is well understood that managing a chronic illness can lead to feelings of stress, anxiety, and depression.
With this increased awareness, there continues to be a push towards more integrated care, where healthcare professionals are not only focusing on the physical symptoms and treatment of CF but are also being attentive to the mental and emotional well-being of patients.
Despite the progress made in the realm of mental health awareness, the silence that surrounds it, especially in the context of chronic conditions like CF, is deafening. We must continue to acknowledge the invisible emotional strains that impact the lives of the CF community and critically strive towards improved access to mental health services.
The power of community
Support groups and networks, both online and, where appropriate, in-person, have been essential for many individuals and families. One such forum is CF Connect, hosted by CF Hub – a group run by adults living with CF who provide a safe online space for adults with CF in Australia to share experiences, knowledge, and support.
Several Facebook Groups also exist, moderated by the community for the community.
Sharing experiences, challenges, and triumphs within such a supportive community can significantly reduce feelings of isolation and help many navigate the challenges of CF.
Cystic Fibrosis Community Care (CFCC) also continues to bridge the gap between physical and mental health support across New South Wales and Victoria. Initiatives like our social work and counselling services are important instruments in providing a beacon of hope and empowering those impacted by CF with resources and support.
We are fortunate to have a dedicated and highly skilled team of Case Managers and Social Workers across our two states, and I encourage community members to contact us at support@cfcc.org.au for any support or information.
Looking ahead
I remain optimistic about the path we’re on. The broader acceptance and recognition of mental health, together with the advancements in CF care, promise a more holistic and inclusive approach to treatment and support.
However, we still face many challenges, particularly with the availability and accessibility of mental health services and the potential impact of modulators on mental health and well-being. We remain committed to doing our part to address such gaps through collaboration and research, and to deliver improved health outcomes for the community.
In closing, I would like to express my deepest gratitude to each member of the CF community – from patients to their families, carers to advocates and researchers to healthcare professionals. Your resilience, dedication, and passion drive the change we aspire to see in the world of CF care in Australia.
Together, we are forging a path where every CF individual can lead a long and fulfilling life.
1. Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, Tiboshc MM, Brucefors AB, Yüksel H, Catastini P, Blackwell L, Barker D. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014;69:1090-1097. doi:10.1136/thoraxjnl-2014-205983