It is not unusual to experience ‘big feelings’ or ‘big emotions’ when living with a lung condition. Many people experience higher than usual levels of anger,…
Changes to circumstances
Change and control
Adapting to change can be tricky, especially if the change happens quickly or with little warning. Working towards accepting the things you can’t change and concentrating on the things you can influence may help to increase your feelings of being more in control.
Good and bad days
Life never stays the same from one day to the next, this is true for everyone. We all have ‘good days’ and ‘bad days’. Giving yourself permission to not always feel on top of everything is a good way to work towards accepting what you can’t change. A simple strategy to help when you are having bad days is to use language that allows for change and possibilities. Instead of saying to yourself and others that you are having a “bad day”, maybe try “I’m feeling flat and low in energy this afternoon”. Building ‘wriggle room’ into self-talk opens the possibility for you to feel different later. Language and thoughts are powerful contributors to emotions.
Control in uncontrollable circumstances
When there is uncertainty and change occurring in our lives, the temptation is to try to stay in control. However, the more control you try to have over a situation, the less control you actually have. Trying to control a situation or other people mean you need to put in more rules and become more rigid in your thoughts and behaviours. Unfortunately, situations and other people don’t necessarily play by the same rules. This can make you feel more out of control, requiring further rules and behaviours, creating a vicious cycle which can ultimately lead to psychological distress.
Looking back with regret or longing is something many people experience as they adapt to the changes happening to their body. This is a natural part of grieving the life that you have ‘lost’. Thinking about these changes as your ‘new normal’ is a gentler way to help your brain adjust to these physical changes. Focusing on what you can still do, rather than what you can’t do, will help you to feel like you still have capacity to do things.
Preparing for tests and scans
The lead–up to tests, scans or appointments with your specialist doctor or GP can be full of trepidation and anxiety. It is normal to experience feelings of worry, fear or apprehension. Telling yourself that experiencing a range of emotions is to be expected leading up to an appointment, scan or test can help you to feel more in control of those feelings.
Adapting to living with a life-limiting condition
Some lung conditions can result in a shortened lifespan. Generally, your specialist doctor will discuss this with you when you’re diagnosed or shortly after. Adapting to a life-limiting condition will be difficult for you, your family and friends. Talking to your loved ones about this can be challenging, however a shared understanding can bring a sense of peace and relieve stress and worry about what the other is thinking and feeling.
Dealing with progression
Most lung diseases will progress over time. For some people the progression is quite rapid; for others, their health and functionality may change slowly. Progression depends on many things and is often unpredictable. Having a good understanding of your disease and what you might expect can help you to manage these changes.
“You can really feel powerless when your condition worsens and then you can feel angry. It can really impact your mental health.” – Anonymous, living with Idiopathic Pulmonary Fibrosis.
Another important aspect of progression is early detection. Leaning to recognise when your symptoms change or flare-up is critical to managing your condition. If your symptoms are changing or worsening, it is not a time to “be strong” and “tough it out”. Do not wait to discuss changes in symptoms with your treating healthcare team. Early intervention can make a big difference.
Mentally preparing for your lung function to decline and change is also important. Think about how you might modify your daily activities to accommodate a decline in physical capacity. You may need to consider pacing your activities as your disease progresses. For example, if you love spending all day gardening, you might need to spend only an hour or two and then allow for rest time. Pushing through when your disease has progressed usually results in high levels of fatigue. If you allow yourself to pace your activities, you will still be able to participate in the things that are important to you.
Mind Matters was part funded by a COVID Response Grant from MSD.
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