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 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 carpark 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.
It's not my fault
When you tell someone you have a serious lung condition, their first reaction is to assume it’s because of smoking. Sometimes it is, but sometimes it isn’t. It's as though 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 damage 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 easier 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
A spell of being really breathless is the most frightening 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 trying to help, but just giving 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
Sudden 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 scared that I’m infectious.
Even when my friends and family understand, it’s really 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 offer me a glass of cold water.
I might look well, but I’m not
I’ve lost count of the number of times I’ve been told: “You look really well, I can’t believe you’re ill.” Because I look relatively normal it’s hard to convince people that I have a serious lung condition – even family.
Someone once advised me to get a second 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 important to me.
Don’t be afraid to talk about it, talking helps.
But it won’t stop me being me
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 enjoy 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.
Do you have a story to tell? It could be about your lung condition, a friend or relative you know who lives with one, or how caring for them impacts your life. We'd love to hear what you've got to say!