Understanding pulmonary fibrosis
Pulmonary fibrosis, also known as lung fibrosis or lung scarring, is a rare condition that can affect a person’s ability to breathe.1
Recently diagnosed
How you might feel after your diagnosis
A diagnosis of pulmonary fibrosis can bring on a lot of difficult emotions. While these feelings aren’t easy, they are quite normal. You might feel:
- Anger: It’s common to be angry that this is happening to you or feel that the diagnosis is unfair
- Guilt: You might feel guilty if you can’t do what you used to, and certain tasks fall to family members
- Sadness: It’s normal to feel sad or low over the loss of your health or possible activities you can no longer do
- Anxiety: It’s common to worry about the life changes you are experiencing or wonder what the future will hold
No matter what emotions you are feeling right now, it may help to remember you're not alone. Patient advocacy groups are a great place to find support and your treatment team (or a quick internet search) can help you find one.
Moving forward
It takes some time to adjust to the shock of learning you have a lung condition. When you feel ready, work with your treatment team and wider support team (such as your family) to start to think about preparing for life going forward.
Tips for living with pulmonary fibrosis:
Don’t let a lung condition stop you from living. Be as active as you can, continue doing what you enjoy, and spend time with friends and family
When you are diagnosed, you may feel overwhelmed with information. Make notes, write down questions, and ask your treatment team to help you fully understand your condition
Your symptoms and abilities may change over time. Keep a record of how you feel so your loved ones know how best to support you and meet your needs
Find more information on living with pulmonary fibrosis.
Abbreviations: ILD, interstitial lung disease; IPF, idiopathic pulmonary fibrosis; PF, pulmonary fibrosis; RA-ILD, rheumatoid arthritis-associated interstitial lung disease.
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Meltzer EB, Noble PW. Idiopathic pulmonary fibrosis. Orphanet J Rare Dis. 2008;3:8.