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Be open with those close to you about your role as a carer to help find the support you need to cope with the emotional challenges.

Although you may feel a range of emotions in your role as a carer, support is available from your loved one’s healthcare team, your family, friends and carer support groups.

Caring for a loved one is often associated with a roller coaster of emotions, which can be both physically and mentally exhausting. It is important to recognize these feelings – both positive and negative. Be reassured that it is normal to feel a range of emotions during this time.

One of the most important steps to take, once you are ready, is to speak to those close to you about your loved one living with pulmonary fibrosis, and how you are coping in your role as a carer for them.

These tips might help as a guide to start the conversation with those close to you:

  • Find a method of communication that feels right for you. This might be a face-to-face conversation, or you may find it easier to talk on the phone. You might find it helps to write down what you’d like to say, so you don’t forget anything that’s important to you.
  • Find a suitable time and place. There may not be a “good” time or place to tell your family and friends, but it can help if you can find somewhere quiet and comfortable, where you are unlikely to be disturbed.
  • Practice what you want to say. You could do this in your head or make some notes. Phrases such as, “This isn’t going to be easy, but I need to tell you something,” or “I’m finding it hard to cope at the moment.”
  • Offer them information or examples that can help them understand. If you’ve found a useful description of pulmonary fibrosis in a booklet or on this website, you could use it to help explain what your loved one’s diagnosis means and how it affects you.
  • Be open. It can feel uncomfortable and daunting sharing this with those close to you, but explaining it will help others understand so they can offer support for you in the future.

Share your feelings with those close to you about your role as a carer to help find the support you need to cope with the emotional challenges.

“[For those who are recently diagnosed] I’ll say, I was diagnosed in 2009, there still is a future ahead for you...Don't sequester yourself away. Get out and talk to other people. If you’ve suppressed yourself, there’s no one else to talk to, no one else you can share experience with, that’ll just make stuff worse.”
– Clifford, BC
(@ 11 years post-diagnosis)*

* Name has been changed for privacy.

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