Ageing for all of us can, at times, be challenging, however, for people with cystic fibrosis (CF) there can be extra issues to consider. In this article, we explore areas of loss, ways to manage, and hopefully thrive.
According to the National Health Survey 2017-18, 47.3% of Australians report at least one prominent chronic health condition. Chronic, by definition, is something deemed “not curable”. Chronic illnesses, including CF, can also be very different for each individual and a person born with CF today will have a very different medical and psycho-social experience to someone born 20 years ago.
Regardless of how an illness manifests, the first diagnosis, and consequent changes to health, requires an adjustment to how we perceive ourselves and our relationships. Initially, there may be feelings of grief and loss: denial, sadness, anger, and hopefully, acceptance and a positive adjustment to our new situation. There is new research advising that grief is not a linear process; it’s up and down and we can swing from being happy, sad and irritable, balancing a myriad of emotions. These feelings when experiencing a loss are “normal”, not requiring pathologising (requiring treatment, intervention or drugs) or closure. For most of us we can learn to live with grief, balancing an array of emotions whilst still moving forward in a positive way.
People with CF and their families often experience uncertainty and worry about what the future progression of the disease might look like. Research has shown tolerance for uncertainty varies for different people and at different times of our lives dependent upon our life experiences, values and individual perceptions. People with a high tolerance for uncertainty are more likely to cope better with anxiety and worry, procrastinate less, be less avoidant and feel more confident to manage CF treatment and other issues.
Tolerating Uncertainty
Understanding what thoughts set off our stress response will help us to better manage our feelings and behaviour. Some useful questions you could ask yourself:
- Is our thought fact or fiction? We have loads of thoughts that can be unnecessarily upsetting and may not be facts, e.g. thoughts like “I can’t cope” may make us feel emotionally down.
- What is the evidence against this thought? When we are feeling unwell, physically or emotionally, it’s easy to remember all the other times we felt horrible, imagining the worst and feeling like “we can’t cope”. These thoughts can be challenged; we can remind ourselves of all the other times that we have coped and managed through hard times.
Practice Tolerating Uncertainty
Changing our behaviours can also lead to changing our thoughts and feelings around uncertainty. An example of this is avoidant behaviour which is often used to try and evade anxiety, however, the more we try to avoid anxiety-provoking situations the more we are affected. Changing behaviour can be difficult so it’s important to start small and build confidence.
Most people thrive on certainty and can cope with a lot more when they know what the outcome is going to be, even if it is bad news. Waiting periods can be particularly bad if we are feeling uncertain or unwell. We know that many people feel relieved when they are given a diagnosis, even if the news is not so good as they feel they can then manage and deal with whatever they need to deal with (Ubel, 2006).
“Illness does not dictate a specific response; however, it does require us to make a reassessment of our identity”
Giving Up and Demoralisation
For some people there is a feeling of relentless struggle and hopelessness in trying to maintain recommended treatments and health, resulting in significant loss of meaning and motivation. Demoralisation is seen as different to depression and may not be identified and treated, however, is considered to be “the giving/given up complex” describing a state of discouragement and feeling unable to cope (Engel, 1967, in Kissane et al, 2001).
Demoralisation is seen as a pathway to decreased physical health, particularly if someone is no longer motivated to maintain recommended treatments. Seligman also discusses “learned helplessness” whereby people surrender their power, feeling they have no control over their health or their environment.
Feelings of loss and control and demoralisation are also experienced by carers. Boss (2011) advises that that the best antidote is human connection, support, understanding, compassion and empathy.
Learnt Optimism
Martin Seligman has done a lot of successful work with trauma survivors, particularly war veterans. He argues that we can all learn to be optimistic. This doesn’t diminish our experiences of loss; however, it helps us to feel optimistic and confident in our coping strategies (see references for short videos on learnt optimism).
Balance Feelings of Grief and Loss with Optimism
People with chronic health conditions are affected in every aspect of their being: physical, emotional, social, financial and spiritual; it may feel that everything that is important to us is threatened. Illness has variable responses requiring us to make a re-assessment of our identity and our perceptions of self and relationships.
Hope, Meaning and Spirituality
Who am I really? Why am I here? What purpose does my life serve?
Greater significance is given to the health values of a “spiritual life”. Studies have shown that religion and faith can help to promote good health and ward off disease, offering social supports and a philosophy that all things have a purpose. For some, it’s not religion but the quality of personal relationships, love of nature and a desire to balance our inner needs with the rest of the world.
“We are at our best when we dedicate time to something bigger than ourselves. This might be religious faith, community work, family, politics, a charity, a professional or creative goal” – Martin Seligman
Family Meetings – Enhancement of Family
Open, positive communication is key; however, many families struggle to positively articulate feelings of grief and loss. Sometimes seeking professional assistance to safely discuss feelings offers a safe space and new strategies of coping.
Engagement with Treating Team and Care Plan
The relationship should feel collaborative to build confidence and self esteem in managing treatment. Taking notes at appointments, asking questions and being honest about limitations or inability to manage is important. The treatment team will make decisions on the information that you give them and also help you to manage your treatment load. The hospital social workers are also really good at working with individuals and families in developing plans and setting goals; you can request an appointment if you are struggling.
Connection and Supportive Relationships
People who have supportive relationships feel happier and have increased ability to manage physical and emotional issues. Healthy relationships take time, commitment, respect, trust, understanding, honesty and open communication. Seeking help to build self-awareness and improve our relationships can be very positive.
The unique role of online support groups, e.g. CF Talk for Adults, and CFWA events for carers, help to build connection, acceptance and tolerance for our own situation.
Summary
There is no health without mental health. Be kind to yourself; having CF or caring for someone with CF can be challenging. Feelings of grief and loss are normal, however, there is also lots of support available. If you would like to discuss support options, please contact Kathryn servicesmanager@cfwa.org.au
Article from RED Magazine, Edition 2, 2019.