Receiving the news that you have pulmonary fibrosis can come as a shock. Getting this news affects everyone differently and it’s important to remember that the way you react may not be the same as your family members or friends.

Your initial feelings

There is no right or wrong way to respond to a difficult diagnosis. Some people feel numb or go silent, while others feel angry or scared for what the future holds. Everybody is different and reacts in their own way.

Give yourself the time to take in what is happening. Some people would rather be on their own, but others would rather spend time with family and friends. If you don’t feel like talking straight away, you don’t have to.

As hard as it can be, try not to push your emotions aside completely. At some point, it’s better to express how you feel if you can manage it, even if it's uncomfortable and hard to cope with.

Am I alone in how I feel about my diagnosis?

Although pulmonary fibrosis is rare, you are not alone. There are other patients with pulmonary fibrosis, like you, all over the world, who are working through the emotional and mental wellbeing challenges of living with a lung disease.

Being diagnosed with interstitial lung disease with pulmonary fibrosis can lead to a range of emotions

An online poll was conducted by Boehringer Ingelheim to learn more about the experiences and emotions of people affected by pulmonary fibrosis.² The results of this global poll and other studies show that pulmonary fibrosis leads to a complicated variety of emotions.^2,3

When asked about their plans over the next year many patients expressed a positive view; some said they would ‘enjoy time with family’ and others said they ‘would like to travel or go on holiday’.²

Some of the feelings patients experienced included confusion about the diagnosis, concerns about loss of independence and worrying about their prognosis.² Although these negative impressions can be overwhelming at times, understanding them can be useful to help build coping methods for future challenges.³ It is important that you seek as much support as possible to help you through these challenges.

Patient support groups are one resource that can help you to cope with the negative feelings of pulmonary fibrosis. The importance of patient support groups was reflected in the poll, with a number of people saying that groups 'made them feel less isolated and provided access to important information’.²

It is normal for a diagnosis of a serious lung condition to lead to feelings of physical and emotional exhaustion, which can sometimes make it difficult to find the strength to cope with the condition.^3,4 Participating in a patient support group offers an opportunity to get together with others who are facing similar experiences and may help you to better manage the challenges of living with pulmonary fibrosis.⁵

Feelings of denial when living with pulmonary fibrosis

Denial happens when someone starts to behave as though they are fine even though they are not. For some people, denial is way of coping with difficult news. It is common to want to avoid thinking about or discussing distressing details of your pulmonary fibrosis.

Being in denial and ignoring the condition can make it harder to plan for the future, including planning the best care or making the right financial decisions. People in denial about their condition can sometimes push themselves to do things they’re no longer capable of and refuse help. This can be dangerous and pose serious risks that can make their condition worse.

Some things to be wary of if you or someone close to you is in denial about their pulmonary fibrosis:

• Stopping medication or trying alternative treatments that may be ineffective or even harmful

• Avoiding or ignoring important information about care planning

• Not discussing doctor’s visits or insisting on attending appointments alone

• Missed or cancelled appointments

• Refusing to track how they’re feeling

• It’s important that you come to terms with your diagnosis in your own time, but it can be difficult for those helping with your care to see you avoid appropriate care. If you are a patient, keep open channels of communication with your friends, family and treatment team.

If you are caring for someone with pulmonary fibrosis who is making choices that you think may harm their health, speak to their treatment team about your concerns.

Staying hopeful

Maintaining a sense of hope for the future will help you focus on looking after your physical and mental wellbeing. This hope could be that you can visit special places, be there for special occasions or enjoy time with your family and friends.

Try to share your hopes with other people, as they can help you to fulfil them. Many people benefit from the hope, comfort, friendship and support that family, friends and patient support groups can provide as they manage the day-to-day challenges of living with pulmonary fibrosis.

The community and support groups page can help you learn more about organisations and resources while on your journey through life with pulmonary fibrosis.

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Community and support groups

Support groups connect people with pulmonary fibrosis together, to help share experiences about managing their condition.
 

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Key takeaways