A diagnosis of pulmonary fibrosis may make you or someone who cares for you feel sad, angry or worried about the future. Dealing with breathlessness can also be frustrating and frightening, and you may feel that your breathing problems have stopped you doing what you enjoy. But you are not alone. There are a variety of treatments available to help maintain your wellbeing.

Anxiety, depression and long-term conditions

Many people with a chronic, life-limiting health condition can feel anxious. Some may also have a low mood or symptoms of depression. It is very common to experience anxiety and depression together.

One in four people will suffer from some sort of psychological illness, and for those with a chronic illness the likelihood of experiencing poor mental health is much higher.

I was nervous talking to my GP and consultant about how my pulmonary fibrosis was making me feeling emotionally, but I needn’t have been. Everyone has been very supportive and has helped to identify lots of resources.

Managing depression

We all have bad days, but if this becomes a long-term state, it becomes an illness in itself, which might need an entirely different approach. Professional support may be needed before it all becomes too much.

Common signs of depression include:

  • feeling sad most of the time for several weeks
  • reduced energy
  • little enthusiasm to do things you normally enjoy
  • loss of interest in people and activities
  • unable to sleep or sleeping all the time
  • eating more or less than usual
  • feeling hopeless about the future.

If you or someone you are caring for has several of these symptoms, talk to your medical team. They may be able to suggest things you can do to improve the situation or prescribe medication that can help.

This year I decided to try medication to help with my low mood. It’s early days, but has already made it easier for me to find the strength to pursue other options such as CBT to help me better manage my anxiety.

Friends and family

Your family, partner, friends and carers are vital to your mental wellbeing, so be honest about how you’re feeling if you can.

They may experience anxiety, anger or hopelessness too. Carers may forget to think about themselves as they focus on the person with the illness, but services and support are there for carers too. If you’re a carer, make sure your GP is aware so that they can get you the support you need.

My diagnosis was devastating for me, my husband and family, and left me feeling adrift. The only way I managed to hold it all together that first year was through counselling. It helped me to continue with my day to day life at work and as a mum.

Coping strategies

Over time, many people learn to adapt, cope and manage anxiety and depression as their health changes with the support of family, friends and colleagues.

Watch our webinar: Surviving or thriving – how to live well with pulmonary fibrosis

Keep talking

Don’t be afraid to talk about how you are feeling. Being honest with family and friends about how you feel helps you to work through the difficult times together. If you find it difficult to talk about your mental state, you could agree a shorthand with your partner or carer so that they know when you’re having a bad day without having to spell it out.

Communicating openly with your employer can also help to reduce anxiety and stress at work. Read more about working when you have pulmonary fibrosis.

If you’re worried about having such conversations, consider talking to your medical team, first for advice and support.  

It’s normal to experience highs and lows, but I have found myself overwhelmed at times. To help this I try to be open with friends, family and colleagues; spend time with my Support Group; have something to look forward to in my diary.

Do things that you enjoy

It is important to try to do things that you enjoy. Spending time with friends and family will help improve your mood. Exercising and doing a pulmonary rehabilitation course can get the endorphins pumping around your body. Many people also really enjoy their local support group.

All these can also be a distraction from the thoughts that are making you feel sad or anxious.

Support services

Don’t be afraid to ask for help. Next time a health professional asks how you are coping or whether you need any support, tell them what’s on your mind and think about your emotional health as well as the more obvious physical impacts of your condition.

The sort of help you need is very personal to you – one-to-one therapies may work for some, while others might prefer groups. Some people like to take advantage of support services in their own home, while others need to get out of the house. Some people find medication is helpful, while others do not.

Find out what works for you – and don’t forget this may be different at different times and for different symptoms.

Palliative care

Palliative care can provide valuable psychological and emotional support for many years. Find out about palliative care services.

NHS guidance and information

Cognitive behavioural therapy

Stress, anxiety and depression

Moodzone for practical advice, interactive tools, videos and audio guides to help with your mental health

Local talking therapy services (IAPT services)

Other help

MIND: the mental health charity

British Lung Foundation helpline: 03000 030 555

Information provided by Action for Pulmonary Fibrosis (APF) is not a substitute for professional medical advice. It’s intended as general information only. APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on actionpf.org.

Further information for carers:

Your essential caring guide (PDF)
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