We approached a registered Australian Clinical Psychologist, who specialises in cystic fibrosis, to answer questions we commonly hear. To respect patient privacy, they have requested to remain anonymous.
Can you tell us a little about yourself?
I am a clinical psychologist with a broad range of experience in different clinical settings. Before I joined the CF team, I knew very little about this complex condition. I am grateful to all the patients who gave me their time, knowledge and shared their experiences to help me understand about life with CF. My professional approach is a blend of different styles of therapy and my focus is on understanding the patient’s perspective and building a therapeutic relationship with them. I have been in my role for four years and it has been a privilege to get to know patients who work so hard!
What benefits do psychologists bring to CF clinic teams? What are their key objectives and goals?
Mental health is an important part of overall wellbeing. The key objective of a psychologist is to identify and address mental health needs of patients and their families. On a broader level, the psychologist also helps the team understand and prioritise the patient’s point of view and advocates for them. They also raise awareness of the psychological impact of CF and the stress it brings into a patient’s life. Psychologists can also help to improve a patient’s assertiveness and communication skills so they can work with the CF team confidently and become an active participant in their care.
What can a psychologist help with?
A psychologist can help with managing the emotional impact of living with CF. Everyone has their own challenges with CF, but sometimes it can all ‘get a bit too much’. Also, even when someone has ‘accepted’ their CF, life throws challenges at them such as an unexpected exacerbation, relationship and career hurdles and treatment burnout. Sometimes patients need help with a specific issue such as procedural anxiety or treatment adherence, but often it is about long-term issues like loss, grief and anger. Overall, a psychologist helps you to articulate your feelings, become self-aware and manage your emotions in a healthier manner.
How do you support someone who has previously had a negative experience with a psychologist?
Starting with a new psychologist can be very daunting – especially if you don’t feel comfortable in new situations. One of the most important aspects of therapy is the relationship between the therapist and the patient. So, if your prior experience hasn’t been a positive one, the best thing to do is to try again with someone else to see if you feel comfortable, safe and understood. If you don’t, then it’s no one’s fault, we cannot predict who we’ll connect with. Try again till you find the person who ‘gets’ you. It is also useful to find out information about the psychologist available online – their qualifications, experience and area of expertise.
What are some of the reoccurring themes that come up when providing psychological support to those living with CF, in a clinical setting?
Mental health and physical health are inseparable – one impacts the other and some of the reoccurring themes that come up include treatment burnout, grief and loss, frustration and disappointment when there’s an exacerbation, anxiety about being in hospital and procedures, relationship issues and worries about the future. My observation is that people’s perceptions can shift between feeling positive and hopeful when they are well to negative and dejected when they are physically unwell. It is important to be aware of this as you can step back from your feelings and not get swept away in a wave of negative emotions. I also see reoccurring positive themes – resilience, determination, wisdom, compassion and humour, especially dark humour!
At what point should someone who is suffering from anxiety or depression reach out for psychological help? Is it early on or at crisis point?
Definitely as early as possible. If you feel out of sorts all the time for more than two weeks, then it’s time to talk to someone. The earlier you address how you feel, the easier it gets to manage it. Ask your loved ones if they’ve noticed a change. Often, anxiety and depression manifest as irritability, reactive mood, avoidance, over-thinking and excessive drinking. So, if you notice that it’s harder to relax, everything is getting on your nerves and you’re feeling overwhelmed, don’t hesitate to talk to your team.
Is the information disclosed to a psychologist confidential? When is information shared with the broader clinical team?
If the psychologist is part of the public health system, then they can share information with the team. However, from a professional perspective, the psychologist can make a decision to choose what they share – if the information is not related to CF or is very sensitive and private, the psychologist may choose to keep it confidential as long as there is no threat to a patient’s safety. This can be discussed in a session, so the patient knows about what is being discussed and can request for privacy. Psychologists do have to maintain notes and records and can make mention of significant issues without going into details. Psychologists have to follow the guidelines for their profession and this includes mandatory reporting requirements.
The majority of males, and some females with CF, cannot have children naturally and may have concerns that potential partners will view this negatively. How would you support someone with such concerns?
Finding a life partner is challenging, even without health issues. There are no right or wrong approaches – some patients have been upfront about CF with potential partners, others have waited until they are secure in their relationships. My focus has been on helping people understand what their own priorities are, how much they are willing to risk and sacrifice and encouraging them to have an open mind rather than make assumptions and set themselves for failure. I also try and focus on the person’s sense of value and self-worth as they need to reflect about what they bring to a relationship.
How can someone process the possibility of not being able to have children?
This is really hard as you not only have to deal with feelings of loss, inadequacy and failure, but also manage other people’s expectations and curiosity about your decisions. The emotions around fertility issues can be very strong and overwhelming and while it is tempting to bury them, I encourage people to step back and observe them and allow unpleasant feelings and sensations rather than pushing them away. Mindfulness helps people to connect to the present moment and improves the ability to observe rather than react to everything we think and feel. From a practical point of view, I have found it useful to help people articulate their jumbled up feelings and reflect about their values in life. People are also curious about the experiences of other patients and discussing the general trends in our patient cohort has sometimes helped with decision-making.
How does someone reframe their self-perception and self-worth when faced with possible relationship rejection due to chronic ill health, fertility issues and the possibility of an early death?
Many people struggle with low self-esteem and self-worth. This is strongly related to our early childhood – how we were raised and the quality of the attachments we had with our care-givers. Having a baby diagnosed with CF can be very confronting to parents and their ability to accept and cope with the diagnosis can impact on the development of the baby. Re-framing perceptions starts with introspection and identifying our self-perceptions, improving awareness to our ‘sensitive’ spots and accepting our vulnerabilities. Compassion towards ourselves and acceptance goes a long way in positively reframing our sense of who we are.
Transplantation is an overwhelming process; how does someone mentally prepare for a transplant? What is the psychological process that occurs around this process?
A post-transplant patient once said ‘even when you’re fully ready, you’re not ready’… this captures the feelings related to the transplant process. No one can completely prepare for such an overwhelming experience. Often, it’s like plunging into the deep end of the pool – a relief when you surface and it’s over. Some of the emotions that revolve around transplant include denial, fear, panic, sadness, regret, hopefulness and excitement. The process of being ‘worked-up’ and listed is a rollercoaster of emotions and it helps to keep life as normal as possible – a good routine, plenty of sleep, healthy eating and exercise. Social support is very important – make sure you involve your loved ones in this process and give them an opportunity to support you.
What are the best ways to support someone who is experiencing a sense of grief and loss about the impact of living with a chronic illness and the effect of not being able to achieve/do and/or alternatively having families/and working and achieving things that they were told they couldn’t or wouldn’t be able to?
From my perspective, one of the central issues of living with CF is the sense of unfairness and loss. There are many kinds of losses – losing out on opportunities for education, work and relationships, on living a ‘normal’ life, on ‘freedom’ to do anything a person wants to do and the greater struggle to achieve things that seem so easy for other people (eg. having children). There is a gap between the reality we have and the reality we want. Often, we are our worst critic, dwelling on the things we cannot have rather than appreciate what works for us. I try and to focus on small successes rather than large perceived failures and help people create a sense of purpose and meaning in their lives and be grateful. While we have no choice about the life we are born into, we do have a choice in how we live it.
If any of this content causes distress, we recommend you review our Mental Health Resources page to consider the many pathways to reduce symptoms of anxiety or depression.
This interview was conducted in February 2021.