9 things people with lung disease want you to know
Ann wants to help you understand lung disease better.
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 switches 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 nine things we’d like you to know.
Doing elementary things take twice as long
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The effort of getting up, washed and dressed can leave me needing fifteen 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 truly embark until noon.
If I’m walking along with friends I have to stop every five hundred yards or so.
But don’t stop me doing them
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Albeit you might feel like you’re helping by providing me a lift, or doing the washing up for me, getting choky is actually truly significant.
It can be rough, but getting exercise is good for me. I’ve learned my thresholds and I won’t go overboard. I don’t need you to do everything for me.
I have to plan everything
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Rushing anywhere will leave me gasping for breath, and the stress it causes can make me feel even more panting. So it’s significant 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 tempo ourselves. Please have patience.
I’m not being antisocial
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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 attempting my best just there are some things I just can’t do.
And if I’ve walked any distance, perhaps from the carpark to a meeting, don’t expect me to reply to your welcoming 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.
It’s not my fault
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When you tell someone you have a serious lung condition, their very first reaction is to assume it’s because of smoking. Sometimes it is, but sometimes it isn’t. It’s as however they think it’s our own fault. It’s not.
And if it is caused by smoking – what difference should that make? So many were just not aware of the harm being done and don’t deserve to be looked down on.
A friend recently had a severe bout of coughing in a hotel, and the people in the next room were very rude about his ‘smokers cough’. When he explained he didn’t smoke but had lung disease they didn’t believe him and just walked off with shrugged shoulders.
It would be so much lighter if people were aware that there are lots of different lung diseases, caused by lots of different things (and for some there is no known cause at all).
Lung disease is scary
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A spell of being truly choky is the most scaring thing about having a lung condition. Even when I’ve experienced it hundreds of times before, I still don’t know how I’ll get through it.
Please don’t fuss over me as it will only make things worse. I know you’re attempting to help, but just providing me some space and being patient is the best thing you can do for me. Having lung disease makes me very aware of mortality.
The trick is to stay positive – after all we are all mortal, so we need to make every breath count.
Coughing fits are embarrassing
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Unexpected coughing bouts can happen anywhere and are unavoidable and very embarrassing. People look at me as if I’m being rude, and others back away funked that I’m infectious.
Even when my friends and family understand, it’s indeed difficult in a public place like the cinema, theatre, church or shopping centre when people don’t know why I need to cough like I do.
My cough won’t just go away by magic; it has to run its course. Don’t give me cough sweets, they won’t help, but do suggest me a glass of cold water.
I might look well, but I’m not
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I’ve lost count of the number of times I’ve been told: “You look truly well, I can’t believe you’re ill.” Because I look relatively normal it’s hard to woo people that I have a serious lung condition – even family.
Someone once advised me to get a 2nd opinion (I’ve had several) and others have told me scornfully that I shouldn’t be using disabled parking spaces at the supermarket because I don’t look disabled.
Without having ‘I am disabled and living with a serious lung condition’ tattooed across my forehead (it wouldn’t fit) most people will never understand what I’m going through – so the support of friends and family is so significant to me.
Don’t be afraid to talk about it, talking helps.
But it won’t stop me being me
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I do want to join in and be part of everything.
My energy levels might dip, but it will never stop me being me. I can still love life with careful planning to accommodate my needs – just be patient with me.
I might be ill, but my illness doesn’t define me. Having a lung condition is not the end of the world, we can go forward with a little help and understanding from friends and family.
What else do you wish people knew about lung disease? Let us know in the comments below.
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