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Helping family and friends to understand

When you are diagnosed with a serious, life-limiting illness it is hard enough to come to terms with it yourself. Many people also struggle to find the words to explain the disease to loved ones, particularly as pulmonary fibrosis is a little-known disease.

Telling friends and family

I only told my closest family initially and then my friends and colleagues when I had symptoms that people were noticing.  I didn’t want to be defined by this disease and wanted to be treated as I always had been.

You should be the judge of who you tell, what you tell, how much and when. If you do decide to share your diagnosis with friends and family here are a few ideas on how to approach it from people who have done this before you:

  • Tell a close family member and ask them to spread the word amongst your loved ones
  • Meet with family members individually to talk about your illness
  • Hold a family meeting to explain your diagnosis

It is hard to predict how family and friends will react. Some will want to know everything they can about your illness in order to support you; others may want to keep it at arms-length. Both feelings are ok.

Many people will want to know how they can help. If you feel you can accept support it will not only help you but may help family and friends to cope. It will also relieve the pressure on your partner or main carer if you have one.

Telling young children or grandchildren

As parents or grandparents of younger children our natural instinct is to protect them from bad things in the world. To tell them that mum, dad or a grandparent has a serious illness and will not get better is tough. However, the effects of pulmonary fibrosis will be obvious to even the smallest child and they will want to know why Grandpa gets out of breath or why Grandma can’t run around in the garden with them anymore.

Even three- or four-year olds can cope with a simple explanation like, 'Grandma’s really poorly. The doctors are looking after her but she isn’t really getting better.' This may prompt questions or a child may just accept your explanation.

It is more difficult with older children. They are aware of illness and death and, of course, are very internet-savvy. If you don’t tell them they almost certainly will find out and perhaps not get accurate information. This is the experience of one family who had to cope with a diagnosis of pulmonary fibrosis in a much-loved Grandma.

Further information for friends and families

Most people you tell will look up pulmonary fibrosis on the internet. Give them links to websites that provide accurate and trusted information:

Action for Pulmonary Fibrosis

NHS explanation of IPF

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