July 24, 2018

Coping with the emotional impact of a diagnosis of Pulmonary Fibrosis

Debra Sandford, Clinical Psychologist, The University of Adelaide

A diagnosis of Pulmonary Fibrosis (PF) is just the beginning of what can be a very emotional time for both the person with PF and their loved ones. Whilst everyone processes their feelings differently, it is quite normal to feel a mixture of emotions after the initial diagnosis. Some people may feel a sense of relief at finally having an explanation for their symptoms, whilst others may be in total shock as their PF might be found by accident. Most people will experience waves of emotions that sometimes appear out of nowhere.

One of the best ways to cope with strong emotional reactions is to talk to someone about how you are feeling and the thoughts that accompany those feelings. Some people say they try to protect their loved ones by hiding their feelings and putting on a brave face. Whilst this might feel like a good thing to do, most of the research suggests that people can make their emotions worse by holding them in.

Letting your loved ones know that you are feeling scared, angry, sad or vulnerable can open a constructive discussion about what you are both about to face and what the next chapter of your life holds.

As you progress through the disease course, there will be times when you feel good and have emotional positivity, and there will be times when you may have an exacerbation (worsening of symptoms) of your illness. At these times, people often find that they re-experience strong emotions and can feel quite flat and low. These feelings are part of the normal emotional reaction to an exacerbation. However, if these feelings last or increase in strength, then seeking professional help can be very useful.

Another strong emotional reaction for people is often the frustration of not being able to be as active as you once were, and the consequent restriction in the number of things you can do and achieve in a day. Some people try to push through their exhaustion, only to be floored for hours or days after. The skill of pacing is particularly helpful for dealing with this frustration and still getting things done. This means still doing things that you want to do but taking regular breaks or staggering the tasks to avoid overdoing things. This also comes with the mind-set of giving yourself permission to take a little longer. This simple concession to yourself that it is okay to be the tortoise not the hare, helps with turning frustration into acceptance.

A final word of advice for managing the emotional impact that comes with having PF, is from one of the PF patients that came to see me and said, “I don’t know why I waited so long to talk to someone about how I was feeling. If I had, I would have coped a lot better up until now.” It’s okay, to let your loved ones and health professionals know you are not okay.