I was just wondering about other sufferers friends/family. Do they know what COPD means or what our restrictions are. My family know I suffer from it but because I never dwell on it or moan about it think its like asthma. Its nice to be treated like everyone else, the other night I waited in rain and wind for someone who thought I wouldn't mind.
I think there should be more understanding of how general everyday things can affect our health.
I would like to hear any suggestions how I can tackle this. Many thanks
Written by
GlenysBeatrice
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Hi GlenysBeatrice, my husband Pete has sarcoidosis and COPD. Our family have a really good idea of how lung disease affects him and l am his carer.
I would sit family and friends down and explain to them exactly how COPD makes you feel and what the repercussions of waiting around in cold, wet weather could mean to you.
You are like everyone else but with COPD. You need to take care. Xxxxxx
You could try the BLF leaflets. I ordered some from the helpline some years ago and they helped me to explain things to family and friends. The helpline number is 03000 030555 and they are open from 9 to 5 during the week.
This was written some years ago, in the form of a letter back then, to give friends and family an idea of what we have to cope with. Someone actually posted it here not long ago but here it is again.
It’s thoughtless to leave ANYONE, especially over a certain age, waiting in the rain & wind. In your case they clearly need a reality check about the implications for your health. I think leaflets are the best idea. Point out they’ll be the ones looking after you & visiting you in hospital if you get pneumonia! None of us wants to be seen as a victim of lung disease but it’s common sense isn’t it? Sadly, very healthy people can be incredibly stupid at times 😠
I care for my Mum when she moved to be near me and have consequently read loads to understand the condition because she didn’t and had never had it explained properly in a way she could grasp.
I have now realised that before she was near me, the assumption my brother was looking out for her was totally wrong and he has no interest in finding out anything then or now about COPD despite me strongly suggesting he does.
So I would go with giving people leaflets, telling them how you are and what is going on and asking them to try to understand so you aren’t left standing in the rain because that’s not good.
I have discovered there is a shocking lack of knowledge about something that is so common.
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