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. 


Comments

Ann, Your blog is perfectly written, thank you so much for expressing what my everyday life feels like. I have had Interstitial Lung Disease for about 10 years since fist diagnosed. At first it was merely the highly embarrassing and debilitating coughing fits, but I still walked, ran, cycled like a younger man than I then was. Now I need Oxygen to walk more than a few yards, can go to sleep after a short stroll, it takes me over an hour to shave and dress myself in the mornings. I still work, but the effort to do so is becoming extreme.
Excelent blog Ann.I was diagnosed with IPF in February.A real blow to us all as I ran a marathon 3 years ago and considered myself quite fit and healthy.At 56 I thought I had years ahead of me and now the future is uncertain.I have good friends who have dealt with the news really well, talk about the condition with me and try to understand.On the flip side one of my managers saw me last week and having not contacted me since diagnoisis,managed to say,"How are you,you're looking well" before resuming conversation with someone else.I'm trying to say positive but as we all know if we don't look ill,others don't always understand.
I feel you have just written about my husband, who has this awful lung disease, who was a active person last year, we loved walking, swimming and ball room dancing. Now he can hardly walk far without getting breathless. Thank you for giving me a better understanding of what he is going through.
Thank you so much for this article it is so helpful for me. I have Emphysema, I understand all that Ann is saying I feel just the same, and it's awful to have this condition when one looks well and yet we are totally out of breath after small activities like getting dressed. I feel better now that I have read Ann's account of how we feel. So helpful thank you Ann. I feel as though it's slowly taking over my life. Gloria.
Such a clearly written, honest and thoughtful blog, Ann. Written from the heart, I know. So relevant, so helpful and so encouraging to others in similar positions living with chronic lung disease. Please continue your good work highlighting what needs to be done to increase awareness and provision for others in similar situations.
This is wonderful, along with copd I suffered two strokes in january2014' I live in Estonia, and recently had my disability oension stopped when I went to a meeting at the health insurance fund the person stated come on you are not that ill, most people who have had two strokes are either in a wheel chair or gave a walking aid, I fought really he'd to gain my independence but I am really tired if the ignorance especially from people in employment in areas that deal with our pensions etc, this had got to be adressed I like several of your previous comments know that my COPD will probably kill me but I am nit ready to give up yet, should we all carry signs stating our illness and it's effects, why are people so ignorant
I was diagnosed with COPD (Alpha 1 Anti-Tripsin Deficiency) back in 2004 and up until the last 2 yrs I have managed to cope(exercising daily I think was the biggest help), but that has now changed. Going up stairs or slight hills, carrying the shopping or even putting out the rubbish is difficult. Having a disabled blue badge has been a huge help but the support of my family even more so. I am a golfer and up until 2 days ago I thought I could get by with a bit of puffing and panting but no this is Spain in 30 plus degree's. I could only manage 3/4 steps without bending over to catch my breath, and although I managed to complete my round the group I was with had to carry my clubs. Fortunately they are a great bunch of guys and would have done, even gone and got me buggy if I had said yes. I am gutted obviously but looked at the British Lung Foundation web site and realised what a stupid Bu...r I was. Am I going to give up, am I hell. I might have to wait until it gets cooler or when I return to UK but I will exercise and continue to push myself so I get some quality of life. Modern Medicine and discoveries in Technology are happening all the time so you never know what's found the corner, so exercise and hang in there.
That was a wonderful blog and helps me knowing others are experiencing the same things as I am. I am trying to gain as much knowledge of the disease in order to help me to cope with it. I also noted one comment regarding getting rid of mucous. Not glamourous at all but very necessary. I find this difficult to deal with. I admire that most comments on Ann's blog are positive about getting on with life.
I learnt to play Bridge years ago. When I down sized and relocated to a flatter area I found a Bridge club and Joined. Unfortunately one of the managers was rather nasty about my cough and when my years mambership ran out I dropped out. It is not easily explained and some people just don't listen!
A very interesting view point. I lost my lovely wife last November after only 3 years of suffering IPF. She never complained and did everything the Doctors asked and tried to stay positive. It's an awful illness and progressive and unfortunately there is no cure. The breathlessness is the worst aspect to have to suffer and witness.
Loved the blog, made me feel normal! I don't need a disabled sticker yet and I still do as much as I possibly can to deny my asthma/COPD but I do get low, embarrassed by coughing, disgusted by phlegm, and panic stricken by breathless episodes, especially in winter. Knowing it will get worse isn't the greatest encouragement, but forcing yourself to keep pushing ahead is the best option I find. Not much use for the people further down the road than me but the best option for anyone who still has options! Never give in to it - and so what if we smoked for forty years? Stop feeling guilty. We didn't know!!
Thank you for your comments, my chest became really bad just under a year ago, and, yes, it is difficult to come to terms with the problems which occur on a daily basis through lack of breath. With your help I will try to come more to terms with the problem, thank you, Pat Hutchinson
A very good and comprehensive article Ann (my namesake!). I was diagnosed with COPD nearly three years ago. People keep telling me how well I look. Little do they know. I think the illness is kicking in a bit as I get breathless so easily now, but carry on as best I can. Your article was very helpful. Thank you. Ann Gilmour
I have had breathing difficulties for as long as I can remember and can identify with all that has been said. I don't think family and friends really understand how difficult and frightening having bronchirctasis can be. One of the biggest problems I have is when I get the chance to go out there is the dread of being near anyone who wears anything which smells. Some perfume, deodorants etc can smell lovely but they can often cause me to have the most awful coughing fit! I get disgusted looks and have often had to leave. Good luck to everyone and keep thinking positive.
Well done Ann i lost my husband a year ago to IPF so i no how you feel some people just don't understand because they look well all the best to you
As well as being Chair of our Torfaen breath easy with25 active members Iam also area vice chair of our regional Health Council , I sit on the Executive panel and attend health board meetings. I also sit on numerous health committees including Scrutiny. I am 68 on oxygen 15 hours daily my mind is as active now as it has always been its just the physical side that affects me. Now hear is my secret, every morning I do 15 minutes light exercises in my room and I recite the following NEVER NEVER NEVER GIVE UP, CONCENTRATE ON WHAT I CAN DO AND NOT WHAT ICANT DO. Believe me it works.
I have bronchietas and so much of what has been said I can now relate. My condition is slowly getting worse but learning about the 4P's at a Pulmonary rehabilitation course has really helped me. I am learning to pace prioritise, and plan my days, not always easy but I try to do it. I am fortunate that the 4th P does not yet affect me. It is positioning oneself during a bad breathing session. Although I guess I do need to get myself together before going on with whatever I was doing so maybe I do do that as well! I do exercise as much as I can and get out of breath but as is said that is good. I find it helpful that someone has voiced these observations - and yes I am always being told how well I look. I would not have it any other way but when you are feeling rough or have had a bad day you feel a bit of a fraud. There we go. Thank you Ann.
Thanks for this. My mum has COPD and this definitely helped me to understand a little more.
Well observed and well written Ann. Nice mantra. Kind regards, live well.
Equated so well with 9 things you should know,especially but you are looking well you liar! And I thought it was just me that was experiencing all this.
I have IPF and sometimes feel a fraud at hospital because there are lots of poorly people there and I look so well? Have only just got around to applying for a blue badge, will I use it? I don't know......I suppose if I can't get a space close to the hospital entrance I will.
Very informative article. I don't have lung disease - but will certainly be far more aware and supportive / understanding as a result of this blog. Thank you
Totally agree I feel so bad parking in handicapped spaces and won't do it if I am not feeling too bad on the day. It is so hard to explain I love going to the shops and just amble slowly around I can be gone for hours and if I am just taking my time I am ok and enjoy it. Have to tell all the grandkids slow down and wait for me but they have all the energy in the world.My scariest time is when I wake from sleep and can't get my breath I go into a panic attack and think I am going to die this time then I come out of it totally exhausted but very relieved.
why must some people wear soooooo much perfume/body spray, etc in public? that is one thing that keeps me at home more than I can go out. also the candles! wow - what odor! that is as bad as the perfumes. how can we get this across to others?
sorry my last comment should say 2 years. typing was never my good side
i could not agree more,i was diagnosed with ipf just over 23 years ago and although my attitude is that it may well kill me but im not ready to go yet, I am sick of people telling me that I am looking well, as though they think I am pulling there leg
Wonderful article on COPD and the other lung diseases. It's comforting to know that my restrictions (exhaustion, embarrassment to cough, slower pace, etc,) are common in lung disease sufferers. Sometimes just getting ready to leave the house takes so much energy that I end up cancelling the planned event. One unpleasant issue that I didn't see addressed is: Most people have phlem that needs to be expelled. Coughing does the trick, but it is disgusting to have to spit it out. There is no quiet way to do this. Also, using a rolater to carry the oxygen, your purse and tote bag is a great way to preserve energy because I become breathless when carrying even just a purse.
16 months ago reported to Doctor. Pain in chest.He said Angina,I replied no one in my family suffered from any heart problems,but had died Pulmanory Phibroses,Mother farther brother daughter and now my son suffers from the same,doctor ignored my information and refers me to a heart specialist,and after 17 yes 17 visits to all kind of specialists,my doctor who admitted he had not heard of P/P accepted I was suffering from same,and still waiting after 17 months for some assistance
Thank you for managing to summarise how I feel about so many aspects of my life with COPD. I read this to my husband and he could hear my voice in much of what you said. I'm very lucky to have supportive friends and family. I do get frustrated with myself at times but armed with a plan (and an inhaler) I intend to carry on and enjoy life.
My pet hates are Reminding family/friend I have copd and all they can do is talk about smoking People walking ahead and not waiting for me People making fun of me or being rude because I am having a coughing fit. I also sit at the front of a bus coz several times the person in front will scurry off terrified they are going to catch something.
Perfectly describes COPD to all those who have no idea what it means to live with the disease. Please share it with all health professionals you are in contact with they need to know this!
Thank you for posting this blog Ann. It will be very useful to a lot of people with not enough knowledge of lung conditions.
i agree with everything said above just get so fed up always being short of breath no one asks for these diseases we just seem to get them
I hate haveing to repeat myself over and over again because people do not take the time to listen to me when I am out of breath also I hate it when people will not give up their seat for me when I am a bit puffed out because as people say I do not look ill it takes a long time to tell people I have lung fibrosis but they still look at me to say so what they do not under stand how it a effects me
Thank you so much for this. I've got autoimmune ILD and I get a lot of these frequently... Other commenters have made excellent points, but the other things I wish people would stop doing is suggesting treatments that are untried, unsafe, less effective than the treatments I'm on or just silly and expecting me to be the foremost expert on what is a largely unknown disease. I was a scientist before I got sick, so I know a lot, but that doesn't mean I know how the person you read about on the internet who had something like my disease died...
Excellent "blog" well done all of you, it does encompass everything we go through, trying to get people to understand that oxygen users are normal in every other way and really us with every other disabled group does not need the "does she take sugar? " attitude, we have come a long way from that. Thank all of you for the time and effort put in, would love to have been involved so keen to get people especially children's awareness.
Posts are spot on. The worst thing about lung disease is the bouts of coughing especially in public places.
I lost my husband a few weeks ago to IPF not that old, 54. Thing we both hated was the fact he looked fairly healthy normal especially if he didn't have oxygen on people wouldn't believe he was ill or had a terminal illness I would never judge anyone like that was so wrong Your post is spot on xx
Such a good blog! Needs to be read by everyone, ESPECIALLY people who don't have lung disease themselves but know someone who does
I think I couldn't have said it better.It was stop on,and so very true.Best wishes to all COPD sufferers.
Each thing we have to give in and allow another person to help us with is a loss of independence that we mourn.
people really don't see past your face, they see you laughing walking talking, and they think you are fine, I plan my outings I've got too, copd really takes it out of you, and suddenly you start a coughing fit, oh lord you've got the dreaded lurgy, it's embarrassing this happening no matter where you are, some of my associates think I'm perfectly well, I play golf with the aide of a golf buggy, and I can tell you how awful that feels when you play an older person and they are walking, but we all carry on, best wishes to all x
this is a very good description of how we cope every day, none of us ask to be ill, just understood.
I am on the edge of this - I cracked some ribs in February, all thought they had healed, went back to work. On the fourth day coughing fit and colapse now known to have parted two of the ribs and displaced them. On major pain killers, off work until September (next review) very short of breath and work management say "Ribs heal in 6 to 8 weeks, you must be faking this" note:- I work as a porter in a trauma hospital - Lol.
so well wrote and how tue
I get upset with the looks from people when parking my car with a blue badge ,from more mature people and elderly. I've heard a woman say " why has she got free parking because she can walk." Asthma/COPD isn't a choice,I hate this disease, I don't go out if I'm ill but go shopping and get some excerise when I can. I have lost my parents and three siblings from this nasty disease. I want to walk,run and cycle like normal people! People just assume we're ok! Do we need a sticker on our cars to say what illness we have.?
At last someone understands perfectly how it feels!! Thankyou
Sums me up too, quite hard to read what your everyday life consists of .....
That sums it up perfectly thats just how I feel.
I have COPD and the ignorance from my employer is really bad got a new manager and he made me do things i could'nt do made me so depressed came very ill with it all but still making me do it or says the door is there 

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29 May 2015