In the CF community we constantly meet amazingly resilient people and wonder just how they do it. The great thing is these people inspire us and research indicates that such skills can be learned and developed in all of us.
At times being a carer or someone with cystic fibrosis (CF) can bring up a whole host of emotions such as anxiety, sadness, guilt, anger, frustration and even depression. These feelings are probably quite “normal” and remain fairly situational, for example, initial diagnosis of CF, hospitalisation, clinic or specific medical procedures. See our Procedural Anxiety factsheet for more information.
Often for carer’s and people with CF these feelings will remain in check until the next health issue occurs, which is again quite normal. However, research indicates that these feelings often spill over to effect other parts of our lives with 2-3 times more depressive symptoms than the normal population.
Outcomes of unchecked anxiety and or depression include:
- Parents suffering from elevated anxiety and depression are less likely to administer medication and or treatment to their children
- Young people and adults with elevated anxiety and depression are less likely to understand their CF and have less motivation to manage treatment regimens
Building Resilience to Manage Stress
So, what exactly is resilience and why should we have it? As mentioned, many of us are stressed, however developing good resiliency skills helps us to bounce back despite trauma or with difficult health or relationship issues.
Martin Seligman, positive psychology author, has researched how people recover from trauma and asserts that for some people they are able to have post-traumatic growth, to not just bounce back to a previous self but to grow beyond with a whole new set of skills and thrive despite life’s setbacks.
Five key resiliency skills are:
- Optimism skills
- Willpower
- Communication and social support
- Organisation and practical preparation skills
- Meaning and life purpose
Optimism Skills
Optimistic people or those that see the glass half full tend to be more resilient, less anxious, depressed and generally healthier. Seligman breaks these skills down to three elements:
- Permanence: Optimists tend to believe that the tough stuff has an end point and generally they can find a silver lining in each situation, whereas a pessimist may believe that things will always stay difficult. More info: www.silverliningstories.com/about
- Pervasive: If something difficult happens an optimist may think, “ok that’s tough but it’s confined to one area and they are able to reflect on other good things in their life, whereas a pessimist may let one negative event spread to the rest of their life.
- Personalised: Optimists learn to not take things personally, whereas pessimists tend to blame failures or problems on themselves even when they shouldn’t.
Take Advantage of Opportunity
Opportunity is a word that inspires HOPE. New drugs, new treatments, new programs, dating, skydiving or whatever gives your life meaning. Edison apparently tried about 2000 substances before having success with carbon wire to invent the electric light bulb.
“Opportunity is missed by most people because it is dressed in overalls and looks like work.” – Thomas Edison
Keeping the balance between realism and hope is also vitally important and learning to surrender when things are out of your control or beyond your capability whilst maintaining hope is essential.
Creativity and Mindfulness
There is a reason that creative pursuits are often used in rehabilitation centres as it helps people reconnect with “flow”, stay in the moment, find joy, new ideas and use parts of our brain that perhaps haven’t been used for a while. Creativity can be applied to anything not necessarily just art, music or writing but to other aspects of our life such as cooking and work.
Resilient people know that stress and pain is part of life and usually something that will come and go. When things are really difficult, breaking it down into “one day at a time” makes it possible to get up and get moving. There are plenty of creativity and mindfulness sites that can help with this, see the ”Connecting, Creating and Looking After Yourself” article later in this edition of Red Magazine for some useful links.
Dealing with Uncertainty
Studies have shown that most people would rather get an electric shock now than at some other unknown unpredicted time, so if there is going to be bad new it’s better to know what it is rather than live with the uncertainty.
“Uncertainty is the only certainty there is and knowing how to live with insecurity is the only security” – John Allen Paulos
The question is “how much do we need to know”? Studies have shown that people who have a better understanding of their health feel more confident to ask questions and manage treatment. The Australian Bureau of Statistics report that approximately 50% of Australians have poor health literacy which directly affects their ability to manage their health or that of their children, directly resulting in poorer health and hospitalisations.
It’s your health, learn about it, ask the health professionals what certain things mean. Take a notebook to clinic appointments. CFWA also have lots of educational resources to help explain different aspects of CF. www.cfwa.org.au/what-we-offer/resources
Loving Compassion
To connect well with others, we need to have a good sense of self, feel worthy and lovable. Brene Brown in her TED talk discusses her research on people that live “Wholehearted” and successful lives. These are her tips:
- Courage- tell your story with your whole heart and have the courage to be imperfect
- Compassion – have compassion towards yourself and others
- Connection – let go of who you think you should be to connect well with others
- Be vulnerable – what makes you vulnerable makes you beautiful. It’s the willingness to do something first, to invest in something with no guarantees e.g. to ask someone on a date, invest in training, to share feelings without necessarily getting anything back
- Stop controlling and predicting – develop spiritual awareness and trust
- Practice gratitude – learn to find the good in each other and each situation
Trauma Recovery and Social Support
Many people with CF and their families experience a level of trauma around diagnosis, medical treatments and illness. Research indicates that trauma can make people feel disempowered and disconnected from others. Herman (1992) discusses how healing can only take place in relationships not in isolation. We need to build trust and a sense of competence, identity and intimacy.
All six people in the CF Talk short films discussed their strong social connections and the importance of family, friends and at times the CF community. Happiness author and business coach Alvah Parker notes that resilient people “are strong people who realise the importance of having good social support systems”.
Article from RED Magazine, Edition 4, 2018.