Dealing with pulmonary fibrosis can take a heavy emotional toll. You may fear losing the ability to function without help and worry about having to rely on others.1 It is important that you do not isolate yourself from family and friends, as this can lead to feelings of sadness, low mood and in some cases, depression.
Feeling low while living with pulmonary fibrosis
Most people with pulmonary fibrosis will experience a variety of emotions that can change gradually.1 Sometimes people say that their sadness lessens with time. This doesn’t mean that you will stop worrying or feeling upset. But these feelings can become more manageable. You might be able to think about your situation a little more calmly and plan what you want to do.
Feeling low is not a sign of weakness. Many people diagnosed with a serious illness have similar feelings and experiences. Keeping open communication with family, friends and your treatment team is very important as they can help you to manage your mental wellbeing.
Be open about your pulmonary fibrosis with your loved ones
Being open about your pulmonary fibrosis can help both your physical and mental wellbeing. Sometimes, you may find it difficult to talk with your family and friends about pulmonary fibrosis. Most people have never heard of pulmonary fibrosis and are not aware what you are going through.
Through learning more about your condition, you will find it easier to explain it to others and get support to help you cope with any negative feelings you may have.
Change the way you explain pulmonary fibrosis depending on who you are talking to: a simpler explanation may be better for children or grandchildren than for adult friends and family.
An example of how to explain pulmonary fibrosis to young children:
“My lungs work differently now. You may have seen that I move a little slower and that my breathing sounds different. I still want to play with you, but you may need to be a bit patient while I catch my breath.”
For older family members and friends:
“You may have noticed that I move a little slower than before and that my breathing sounds different. My lungs work differently now because I have a condition called pulmonary fibrosis. This means that there is scarring in my lungs which causes me to feel breathless. I do have support from my treatment team and it’s important that I take care of myself.”
If you do not have family and friends to reach out to, ask your treatment team about patient support groups and counselling in your area
Staying active and maintaining hobbies2
Recognise that you will need to adjust your lifestyle and may need to rely more on those close to you. This does not mean that you must stop doing the things that make you happy. Try to stay active and remain positive. Having family and friends by your side and joining a patient support group can give you the support you need.
What you can do:
Patient support groups.3 Talking to other people who are going through a similar experience can help you in coping mentally with pulmonary fibrosis. In a patient support group, you will meet other people who are going through similar experiences to you. This gives you the opportunity to make new friends and share feelings about your daily lives. Patient support groups sometimes invite guest speakers, who will help to give you other viewpoints on your pulmonary fibrosis.
Please visit our community and support groups page for more information and resources that can help you find patient support groups in your area.
The types of food you eat can have a powerful impact on your mental wellbeing. Making sure you eat a well-balanced, healthy diet, full of fresh foods and lean protein can help you maintain a balanced mood and improve your wellbeing. At the same time, it’s important to allow yourself treats every now and then.
Visit our page on nutrition for more tips and resources that can help you create a healthy diet plan.
These can help you deal with the everyday stress of pulmonary fibrosis, by relaxing both your mind and body. Techniques can include meditation or mindfulness, where you calm your mind by being aware of your surroundings and at peace. Some people also find yoga useful.
Pulmonary rehabilitation - staying active and exercise2,4
There are lots of ways to stay active (walking, yoga or gentle strengthening exercises), and exercise has been shown to help reduce anxiety, depression and improve overall quality of life.
Social activities and hobbies
Keeping up with friends and family and enjoying the things you love to do can have a positive impact on your mental wellbeing
Use video calls such as FaceTime or Skype to stay in touch with loved ones near and far. You can get training on how to use these apps if needed by speaking to patient support groups and local pulmonary fibrosis charities
Join a support group, if somebody puts out a hand for help, somebody will always hold it
How do I know if I am depressed?
Depression is a clinical condition which is different to just feeling low every now and then. It is a common problem for patients with pulmonary fibrosis1 and it is important to understand that being diagnosed with depression is not a sign of weakness.
A doctor will be responsible for diagnosing clinical depression. If you or your caregiver notice any of the following symptoms of depression, talk to your treatment team:
- Daily sadness
- Loss of interest in friends and hobbies
- Irritability and anger
- Sleep problems and lack of appetite
It can be helpful to keep a diary of any symptoms of depression so that you can track how long you’ve been having them. Take these notes to your treatment team at your next appointment
It is important to stay connected to friends, family, and take part in as much as possible in activities that you enjoy.
Speaking to a mental health professional
You should not have to suffer alone. As part of your treatment, you may need to speak to a professional counsellor.2 He or she may suggest different options to help you cope with depression that best suit you, such as relaxation techniques, exercize or medication. A psychiatrist, psychologist, or support group can also help you cope if you have feelings of anxiety and depression.
Medications may be the right treatment option for your depression. Speak openly to your treatment team about any feelings you have to see if antidepressant treatments are right for you.
To learn some practical tips to help you manage your mental and physical wellbeing, visit the taking care of yourself page.
Try to always, always think positive and be able to see the light at the end of the tunnel. It’s very important that you don’t lose your hope, the hope for life, the hope to live, the hope to get better
- Living with the demands of pulmonary fibrosis can take a heavy toll on you and can lead to a low mood
- Feeling low is not a sign of weakness and it is important to be open and talk to those around you about how you are feeling
Speak to your treatment team if you are feeling low as they will be able to provide help and guidance
- Russell AM, Ripamonti E, Vancheri C. Qualitative European survey of patients with idiopathic pulmonary fibrosis: patients’ perspectives of the disease and treatment. BMC Pulm Med. 2016;16:10.
- Mental Health Foundation. How to look after your mental health. Available at: https://www.mentalhealth.org.uk/publications/how-to-mental-health/. [Accessed April 2019.]
- Duck A, Spencer LG, Bailey S, et al. Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis. J Adv Nurs. 2015;71(5):1055–1065.
Swigris JJ, Fairclough DL, Morrison M, et al. Benefits of Pulmonary Rehabilitation in Idiopathic Pulmonary Fibrosis. Respir Care. 2011;56(6):783–789.