Explaining pulmonary fibrosis to others
Although you may feel a range of emotions, support is available from your treatment team, family, friends and patient support groups
After diagnosis, you may find yourself dealing with a lot of difficult emotions. This is a normal part of being diagnosed with a condition like this. However, one of the most important steps to take, once you are ready, is to speak to those close to you about your diagnosis.
These tips might help as a guide to start the conversation with those close to you:
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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
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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
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Practice what you want to say. You could do this in your head or make some notes. Phrases such as, ‘You know I’ve been feeling unwell for a while. My doctor has given me some tests and they know what’s going on’ or ‘This isn’t going to be easy, but I need to tell you something’
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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 you’re experiencing. It can help to explain your diagnosis by offering information bit-by-bit. You can ask your loved one if they understand what you are saying before you carry on
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Be open. It can feel uncomfortable and daunting sharing your diagnosis with those close to you, but explaining it will help others understand so they can offer support for you in the future
Be open with those close to you about your pulmonary fibrosis diagnosis to get the support you need