Coping with a serious lung condition such as pulmonary fibrosis can be difficult. Read more on how to cope with pulmonary fibrosis as well as other patients’ experiences.
- Learning you have a serious illness is difficult and affects everyone differently. There is no right or wrong way to react to the news
- You are not alone in your diagnosis: pulmonary fibrosis affects millions of people worldwide
- Speaking to people and attending patient support groups can help you come to terms with your condition
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 do.
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 right 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 well-being challenges of living with a lung condition.
Being diagnosed with interstitial lung disease with pulmonary fibrosis can lead to a range of emotions
People with pulmonary fibrosis and their caregivers have reported feeling confusion about the diagnosis, concern about loss of independence and worry about their prognosis.
Although these negative impressions can be overwhelming at times, understanding them can be useful to help build coping methods for future challenges. 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.
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. Participating in a patient support group offers an opportunity to get together, virtually or in-person, with others who are facing similar experiences and may help you to better manage the challenges of living with pulmonary fibrosis.
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 treatment planning
- Not discussing doctor’s visits or insisting on attending appointments alone
- Missing or cancelling 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 healthcare team.
If you are caring for someone with pulmonary fibrosis who is making choices that you think may harm their health, speak to their healthcare team about your concerns.
Maintaining a sense of hope for the future will help you focus on looking after your physical and mental well-being. 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 organizations and resources while on your journey through life with pulmonary fibrosis.
Community and support groups
Support groups connect people with pulmonary fibrosis together, to help share experiences about managing their condition.