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

Slow down

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!

Share your story


Comments

You've described exactly how my wife is. Her problem has yet to be formally diagnosed - there is a NINE month wait at present at our local hospital for the Respiratory Clinic. For the moment, she is being treated as if she had asthma.
This is a blessing to find this these experiences I get the You look ok to me,from my friends and family and of coarse i felt guilty. But now I see that many people have the same problem. I exercise almost every day .The humid and hot weather is tough as you all know. Im on oxygen and I have a great wife who suffers from her own lung problems.Thanks for the chance to read and understand my and my wifes ilness somewhat better.
Very helpful. I have Bronchiectasis I'm going to share this with my family even though Bronc isn't mentioned. It's all true.
brilliant way of communicating problems and considerations by carers and friends/families. I would add a lack of knowledge means scariness is made so much worse by just not knowing.............x
another cartoon directed to carers and family/friends would be really helpful and please dont smoke near people with lung problems - think on meal time - spicey food, vinegar, chocolate, salt, are just some of the foods that can trigger a cough......hairspray, deodarants and airfreshners, is it worth using when can cause a coughing fit.........xx
Every word I read was how I feel about my life.   I have bronchiectasis and have invested in a scooter it has given me a new lease of life.  I can go out and see what's going on around me, it's wonderful. 
walking  any were take me longer many people who dont have copd
Just something that happened yesterday. Please don't talk to me while I'm having inhalers! Please let me know you're ill with flu BEFORE I come to stay with you. And please don't moan about your 'right to smoke' round me. My lungs have rights, too.
Thank you Anne .i do not feel so alone now. Everything you say is what I think. The planning before accepting every invite, wondering if I can manage without looking a fool in a public place, the way people think you are antisocial if you refuse to go somewhere and that I am being a kill joy if I don t get entheusiastic cos I have to ask so many questions eg where is it, is it flat , how far is it, are there seats etc. People say it's just up the road . To them it might be but to me it's a mile. Thank you again Anne.
I have had severe COPD for several years now, my father and my brother both died from it's associated illnesses. I am on oxygen 24/7 and even my Doctor has expressed his surprise that I came out of intensive care in 2015. I have just read Ann's article and I wish I could have circulated this to my family and friends years ago. She has covered so many points which I have experienced and which others will probably only understand if they become ill. My husband is the only one who knows exactly what to do during an exacerbation, although I trust my daughter to manage, he is the one who has had to look after me.
Dear Ann I have a lump in my throat reading your artical as I can relate to everything you have said. I'm in my mud 50's and was born with bronchiectasis. Life has been extremely difficult fighting a never ending battle of chest infections and coping with all the other problems that have came with it and YES because it is an invisible illness l feel that us people suffering with lung disease don't seem to receive the same understanding and empathy of that of other people who suffer from other dreadful illnesses. Reading your article and everyone's comments on the daily struggles physically and EMOTIONAL of sufferers is heartbreaking. There's never a day off every day is a constant battle. Only thing we have is to try and keep positive which is a challenge on many days !! Take care everyone xx
The article was very helpful and supportive, I have finally been diagnosed with emphysema but it took 2 years of my doctor saying there was nothing wrong with me as I had an occasional social cigarette. After collapsing and taken to hospital I can finally get help ( I hope! ). I live on my own (my husband having died 10 years ago) and find it very difficult to go out, I live halfway up a steep hill and shops are over 8 miles away. Now the cold weather is coming my breathing is getting much worse and I wish I could have someone to go to for reassurance and a hug. I don't want a relationship just a hug from another person and to be told 'it's ok you're going to make it through this.' Anyone will do I'm not fussy and I can't have a pet as I have allergies.
Im 27 years old amd suffered badly with asthma since born. Ive been in and out of life support critical unit and emergancy ward etc all my lufe due to asthma. Which has now lead for me to have copd. I depend on a nebulizer have have done since febuary. Thats still without the admissions in hopsital. I also suffer with reumatoid arthirtus plus a blood disorder plus hemonjioma on my liver. Life is nothing but a task!. I have two beautifull children aged 7 and 4. And people look at me gone out when i use my disabilty badge. But i have to with me having two kids n my really bad illnesses. I annot walk that fast no more  never mind run!. Life has been 1 hell of a struggle since last year of my diagnosis. But it does not stop me being the mum i once was. I still see to my children on a daily basis i just have to have someone with me when i take them on hoilday or to the park etc.. family and friends dont quiet understand the struggles the stress the scaryness of this illness. So thank you for posting a blog because im guna share it every where for evryone to try get a better understading thank u 
Catching a cold can knock me off my feet. Invariably it develops into a chest infection and then pleurisy. Taking months to recover. 
Following a diagnosis of lung disease it is normal to feel scared and depressed in the knowledge that it will curtail your Ability to do the things you have always done and enjoyed, which, of course, it will.  However there are certain to be other things you ARE able to do, which you have never had time to do, so get out there and do new stuff, begin less strenuous hobbies, do things that use the parts of your body which are not affected, like your voice.   Start painting,  start making things, Join a social singing group,  you will find it helps your respiratory management, and it is FUN! 
I've got sarcoidosis and its the short of breath and the coughing that still getting used to. The blog is brilliant, its when people don't see the problem, and getting told to give up smoking hard job to when I don't.
This just a out sums up how I feel. I can cope with the smoking comments, but the one that ge6s me is you need to lose weight. I know I am a large lady, I know I need to lose weight but I am 5 stone lighter than 5 years ago and in that time my breathing has worsened.
I don't have COPD, I have a scoliosis pushing my ribs in and reducing my lung capacity, but it causes similar problems, and I agree with everything that has been said by Ann. Lack of energy is the worst thing for me.
Hi Ann .. you have just said exactly how I feel...had to share it with friends as most of the time they just don't understand and sometimes I feel they think I'm just being lazy!!!... wish I could get a blue badge too as some days it's difficult to walk in cold air to even short distances used to have one...the dr said I should but new rules not sure I can get another one sadly :(
Wow! To say 'This is my Life' is spot on. It couldn't be more accurate and, as stated, I've lost count of the "oh you do look well"!
Hello. I just came across this post by accident. At the beginning of 2018 I was diagnosed with ocpd,emphysema by my G.P. I smoked for40 yrs and was shocked to find out I had it! I instantly went through a stop smoking program by myself with N.R.T. With the patches,and the fear of a horrible death I’ve never had another cigarette. I also used to smoke cannabis joints for lower spinal injury pain as well. Giving up was probably the hardest thing I’ve done. I still cannot bring myself to find anything out about this,this is the first time ive read anything,I was hoping it would just go away. I’ve just made a first appointment yesterday to see my G.P. to see a specialist maybe ? and see what help there is and to maybe have some tests! I still sometimes crave tobacco and still buy and use the patches,especially if I’m stressed out, but am still,stopped! Anyone reading this out there smoking , you can kick it ,please try! Thanks to all the others who have written on here ,it gave me a insight into this scary condition. Take care,
Healthy people seem unable to understand just how long it takes me to get my breath back. I have COPD now at the severe stage. I try to keep active in the only ways I can given that I can barely walk any distance; one of these is horseriding. Although people know that I have the disease, and I even tell them that my lung function is 40% of a normal 68 year old, they seem to think that forgiving me for having to stop is enough. They then want me to get going again far quicker than I am capable of. That's when they seem unsympathetic.
This helps. No one except fellow "handlers" understand how debilitating copd can be.
I enjoyed your write up on face book about coping with COPD and would like to keep in touch with your blog. How do I get details. Your write up certainly was fantastic. Thank you

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29 May 2015