9 things people with lung disease want you to know

Lung disease is scary, and for those of us living with a lung condition – such as chronic obstructive pulmonary disease (COPD), idiopathic pulmonary fibrosis (IPF), mesothelioma or many others – it changes our life forever.

But because we don’t always look ill, it’s difficult for those around us to know what we’re going through. Here are the 9 things we’d like you to know.

Doing simple things take twice as long

The effort of getting up, washed and dressed can leave me needing 15 minutes to get my breath back before I can even think about finding something to eat. Sometimes it takes so long to get ready in a morning that the day doesn’t really start until noon.

If I’m walking along with friends I have to stop every 500 yards or so.

But don’t stop me doing them

Although you might feel like you’re helping by giving me a lift, or doing the washing up for me, getting breathless is actually really important.

It can be tough, but getting exercise is good for me. I’ve learned my limits and I won’t go overboard. I don’t need you to do everything for me.

I have to plan everything

Rushing anywhere will leave me gasping for breath, and the stress it causes can make me feel even more breathless. So it’s important to plan every detail of what I do.

Where can I park? How far is it from the car to the entrance? How long will it take? Is there somewhere to sit? Is there an incline or any stairs? Will it be windy? Is it too hot? Is it too cold? What is the pollen count like? What’s the air pollution forecast? Are there any colds or coughs going around?

All these and more have to be taken into account before doing anything at all. Nobody else knows just what we need, or what we can do, so we need to pace ourselves. Please have patience.

I’m not being antisocial

Because I need to consider so many things before I go out, sometimes the day just has to be cancelled. And if I do make it out, I might need to leave early, or sit down in the corner.

It’s not because I don’t want to spend time with you, and it’s not because I just want to lounge around watching TV. I’m not being difficult, I’m trying my best just there are some things I just can’t do.

And if I’ve walked any distance, perhaps from the car park to a meeting, don’t expect me to reply to your greeting of “Hello, how are you?” I’m not being rude, it’s just that I need to get my breath back before I can speak.

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9 things people with lung disease want you to know

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