Being told you or someone you love has a rare lung disease can be very overwhelming and frightening.
As you navigate living with and managing a rare lung disease, there are some valuable strategies that you can use to help deal with the range of emotions and physical challenges you may feel.
Looking after your mental wellbeing
Clinical psychologist Debra Sandford suggests trying to stay engaged with “your life”, however that looks for you. Remember, a lung disease is only one part of it.
Communication is also vital. While it may be hard to express your fears and worries, putting on a “brave face” can potentially increase feelings of isolation. Talk as openly as you can and let loved ones know if you are scared, angry, sad or feeling vulnerable.
Research shows that people with higher emotional distress experience a greater negative impact from their physical illness, so implementing strategies to manage your emotional wellbeing is just as important as your physical health.
“It is quite normal to feel a mixture of emotions,” she says. “Some people may feel a sense of relief at finally having an explanation for their symptoms; others may be in total shock … most people will experience waves of emotions that sometimes appear out of nowhere.”
If you feel you are having a “bad morning” or “bad day”, try to break it down into moments. Change the narrative from “bad morning” to “low energy” morning, or rephrase it another way, such as “my breathlessness is bothering me this morning”.
If negative emotions continue or you feel depressed, ask your GP for a referral to a clinical psychologist. A Mental Health Care Plan can give you access to a number of subsidised sessions with a clinical psychologist or social worker, depending on your needs.
Navigating the physical changes and challenges
When you are initially diagnosed or as you experience changes in your condition, try to allow yourself time to adjust. You may find these changes affect your temper, concentration, appetite, memory or sleep.
You may also feel frustrated at not being as active as you were. Pacing yourself can help, as challenging as that can be. Along with regular breaks, tips for conserving energy include:
- Reduce your strenuous movements and heavy lifting.
- Sit when possible to perform activities; and
- Control and coordinate your breathing for simple daily activities such as standing up, lifting objects and putting on your shoes.
Resources and programs to help you live well
Lung Foundation Australia offers a range of resources and services to help you regain the best quality of life available to you. Find out more about some of these below or contact our Information and Support Centre via free call 1800 654 301 to discuss how we can help.