Idiopathic Pulmonary Fibrosis (IPF) is a scarring disease of the lungs of unknown cause. To make a diagnosis of IPF, your doctor will perform a thorough history to try to identify potential exposures or other diseases that might lead to scarring of the lung.

If diagnosed, over time scarring can worsen making it hard to take a deep breath. The lungs then cannot take in enough oxygen to oxygenate the blood. IPF is a form of interstitial lung disease, primarily involving the interstitium or the tissue and space around the air sacs of the lungs, and not directly affecting the airways or blood vessels.

There are various kinds of interstitial lung disease that can also be caused by inflammation and/or fibrosis. These types of IPF are treated a bit differently. It is important to work with your health care provider to determine if you have IPF or another form of interstitial lung disease. If a plausible cause is found, then you do not have IPF. The scarring pattern of IPF is technically called usual interstitial pneumonia (UIP). Your doctor will use detailed X-rays of your lungs called high-resolution computed tomography (HRCT) and sometimes a lung biopsy to look for this pattern. A diagnosis of IPF requires that your doctor cannot find a cause and the presence of a pattern of UIP on either HRCT or a surgical lung biopsy sample.

You may be more likely to experience poor mental wellbeing or a mental health condition if you are living with a lung condition. This might be because: you find it harder to do the same activities that you did before you became ill you worry that you will not be able to breathe you feel frustrated if you now need regular medical treatment and more support from others, or you worry about the future with your lung condition.

This could then have an impact on how you view your role at work, interactions with your family and friends, and your self-esteem. Having a mental health condition may also affect your ability to cope with your lung condition.

This might mean: feeling anxious about being out of breath, so you avoid exercise being depressed and not feeling able to take your medication, or avoiding social situations and feeling isolated. This creates a negative circle of events; if your symptoms are not well-managed, it could then make you feel worse.

Having issues with your mental health is very common and nothing to be ashamed of. It is good to be able to speak openly about it. If you feel like you are not coping, discuss this with your healthcare provider who will be able to talk through your options for finding support. In addition to this, you could also try the following. Find a support group for people living with your condition. This could be local to you, or an online community. Many people find it beneficial to talk to others who have similar experiences. Talk to your family and friends. Although they may not be living through the same experience, you can help them to understand what it is like for you.

You could discuss with them the ways in which they can help you and explain to them the times when you need your own space. They may be able to help you notice changes in your mood and if you need further support. “One thing I learned from my time spent networking with people from other patient organisations is the useful phrase – it is okay not to be okay. You have to allow yourself not to be okay at certain times in your life. It’s so difficult to be strong and cheerful and happy and okay all the time. You have to allow yourself to be in a bad mood. I have bad days sometimes – I don’t see anyone and they are days just for me. I cover myself in a blanket and stay home. I cry, I shout or I sleep if I have to. I allow myself not to do anything and then I wake up the next day and feel refreshed – it’s a new day and I almost feel reborn, I can be positive again and I feel like new.”

Elena Connect with patient organisations working to support people with your condition. You may find that becoming actively involved with these organisations gives you communication with a range of people with similar goals to you and also keeps your mind active as you work towards these shared goals.