Hello
We would like to hear your views on the language we use in our health information for the public.
In particular, we want to know if you think we should use the word ‘condition’ or ‘disease’.
Please let us know by answering three quick questions at research.net/s/YKT75GS. Thanks for your help.
Thank you
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Disease ilness condition all sounds good to me depends in what context your writhing or is it righting and msg you want to get over or portray
Gawd am no expert but being honest is all ways a good start and not holding back on info makes it easer to bare palatable in the long run
Agreed. Let's tell it like it is.
How can we expect people to believe we need more funds, more research, better medicines and so on if we don't use strong and correct wording.
Hi Jabber defo agree with you there and am sure a lot of other suffers do to
DEFO Elegantly put and to the point
As above. If the area of lung problem that you are referring to is a disease then use the word. Don't panda us. Don't go all PC. We're are all grown ups here. Rib
Hi, I am asthmatic and so are my three daughters, but I don't think asthma is a disease.
Exactly my reasoning. The Community covers the whole range of lung problems. So it the reference is to a condition then don't freak people out. When referring to another area then disease is far better. Can't class cancer as being a bit out of salts. So use the most appropriate terms. That way people who know will not be shocked and people who do not understand a label will become better educated. Which is surely better for everyone. With or without a lung problem, disease or condition.
all means the same thing but if you say you got a disease to some one there look at you as if you haven't got long to live and if you say you got a condition there don't take much notice x
Disease definition on google:
"a disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury." No idea if that is helpful.
Actually i think its both, depending on context as Daz suggests.
Disease must have more impact when fund raising, or awareness raising.
But if I'm talking to friends i say "condition" because i don't want to define myself as sick other than when i have a flare-up as that might affect how i live my life. Guess we are all different here depending on many things, e.g. stage of copd we are at, attitude etc.
But people "outside" obviously need to be educated about the horrors of copd and I'm only too happy for "disease" to be used for this purpose. It puts it right out there like it really is.
Only just checked the survey and see its for info for those already affected, opposed to e.g. fundraising. I really don't know. If its info being newly provided, disease could feel more frightening and people are traumatised enough when first diagnosed.
To me, disease feels very fatalistic, and condition feels more manageable.
But the terms overlap. Possible to use both in an info leaflet?
Out of curiosity, if you don't mind me asking, did you look at the survey O2Trees?
Yes, filled in - explain in final para.
Why are you asking?? in their initial post BLF just say which should be used for "the Public". They didn't specify that the info was for people affected, so i replied in that vein.
It wasn't a complaint. I asked because I misread your post ( lack of sleep). I hadn't even linked the possibility of it being for fundraising. I probably wrongly assumed it was linked to their previously announced intention to amalgamate their leaflet and booklet into a single document. As you correctly say it does not detail what way they hope to use the info.
Sorry if I put you out by my ham fisted question. Rib
No problem at all Rib, always happy to clarify - i just didn't understand what might be contentious. I constantly misread things as my concentration is pretty shot these days. i don't think the BLF were clear and their post somewhat contradicted their survey.
Re-looking at the thread, it seems to have generated a lot of discussion.
Take care, 
Oh and another thing, have they reworded the survey now that all the above has been voiced? It seems differently worded for the better.
Maybe just the pills.
No idea, Rib. I've just looked and they seemed to have closed it down now.
I just filled it in so its still going
Maybe its my system - just say "Thank you" when i click through, weird.
It says thankyou to me now, it does this if you try and fill it in again. I think you must have either filled it already and gone back, or started to and it thinks you have done it.
Yes you're right, i did fill it in - guess it won't let you go back to revise what you said!
In a medical context 'condition' means any disease or disorder, whereas in ordinary language 'disease' has the connotation of something infectious or contagious . . .
I prefer condition to disease; the later word has very negative connotations. I also dislike being described as a 'poorly' person; COPD does not define me. Sometimes I am poorly other times I am not, in the sense I can get on with life albeit at a slower pace.
I'd say I'm physically challenged, I'm not contagious so I don't class it as a disease, it's not a set condition as it can change daily, good days and bad days, I'm fully compess mentos whatever day it is ( I think so anyway ) so not a mental disorder, it's physical things I find hard. But hey I don't mind any of them really I've been called worse. Xx Sonia xx
That's good'en that .. I just say am defective
Usally al say might as well talk to elvis on the moon coz no one's in
But thats dependant on who am talking to
So ad agree its not all bad lung diease ya can have lots of fun to
I maybe should have COP Condition rather than COP Disease until it gets to a more advanced stage!
To me a disease is something you 'catch' or be infected by. I have Idiopathic Pulmonary fibrosis and the definition of Idiopathic is "we haven't a clue", so I cannot see how it can be defined as a disease! 
condition to me is better, disease sounds as though it is contagious
Hmmm, I would say COPD is a condition. A disease usually has a definitive time span if it is something like measles or chicken pox. On the other hand I would say cancer is also a disease.
I have diabetes 2, not sure if that is a disease. I also have kidney disease and emphysema. Emphysema just goes one way in most cases so that is probably a condition.
Personally, I no longer tell anybody apart from close family, when there is any change. Doctor already knows so he/her doesn't count. I found the world and his wife have got a relative or acquaintance with something much worse and proceed to go on and on about all the gory details.
I only discuss my health with other sufferers, as they are the only ones who understand. Other people are interested only in their own lives. As the saying goes, one half of the world doesn't care, the other half are glad it isn't them.
I have a condition that affects my breathing and as far as I'm concerned that's a perfectly good description in a social context. Here, on this forum and in a medical context the word disease is fine but not everybody has to know how extensive my lung disease is, so I prefer not to tell them. Call it pride, call it vanity but to me it's just a small matter of dignity. The word suffer is another one I try to banish from my social vocabulary. So when at all possible and for as long as possible, I'm opting for 'having a condition' rather then 'suffering from a disease.'
I have Bronchiectasis and prefer condition rather than a disease.
However mine has recently been diagnosed as 'severe and extensive' so perhaps for accuracy a prefix describing the condition/s as severe, moderate or mild would be more descriptive.
We are all so different and some of us can be very ill with conditions that affect others much less severely.
My bronchiectasis is also very severe and extensive with both lungs badly scarred. At this stage I know that there are more then one 'conditions' going on but outside of medical circles, I prefer to keep this information to myself. So still prefer to opt for 'condition'.
Sorry for any misunderstanding Argana, my post wasn't meant for you personally, had no intention of arguing or disagreeing with your post. Was just offering my own opinion to the poll but I rarely post anything so must have pressed wrong button.
Usually avoid social media sites like the plaque, can't stand the 'spats' that start out of nowhere but this one is a useful source of info; for anyone with health issues so I've stuck with it.
No misunderstanding at all Delilah. I was just continuing the conversation and empathising with you as a fellow 'severe bronchiectasis' sufferer. Is your's stable ir do you have a lot of exacerbations ? Mine was very manageable until 2013 but it's become very problematic now. Keep well !
Thanks Argana relieved I haven't unwittingly caused offence.
I have quite a few things wrong with me, auto immune problems mostly but I didn't know how serious my Bronchiectasis was until the 2nd high resolution CT scan was done by a diff; consultant late last year.
Always been prone to chest infections & caught a cold 10 days b4 Xmas, thought the daily anti-bi's I take + my 3 inhalers would protect my airways but they didn't.
Lost nearly a stone in weight over Xmas bcos I couldnt eat, only turned the corner when treated for a bacterial infection, felt better within the week so now I'm back to normal (for me).
Like you I prefer to keep a positive attitude, don't like to moan or be fussed & treated like an invalid but must admit it was quite scary to feel like one so I've been a little less gung'ho about my health since.
How do you manage to get through the 'dips' ?
The short answer is 'with great difficulty' Delilah. From your description it would seem like you tried to get by without antibiotics from the flareup and only began to feel better when properly treated. I'd been trying my best to keep off oral antibiotics all last year and getting by with daily Azithromax plus nebbed Colomycin. It was a disastrous year with almost constant sob and chest pain. After two long hospital stays in September (19 days) and November (16) days, I've finally improved. 14 days of IV antibiotics and IV antifungals in late November certainly helped a lot. I've had two lots of oral abs since then but am far less sob and regaining body strength. I'm taking lots of vitamins and drinking a glass of beetroot juice daily too. For January, I'm doing quite well.
You must have been very ill to have spent so much time in hospital Argana. Hope you remain stable long enough to get your strength back.
Afraid I didn't recognise that cold/virus as the start of a flare up, clearly I've a lot to learn.
Xmas was galloping up so hoped if I just looked after myself I'd get by on a wing and a prayer duh! but of course things just went from bad to worse didn't they?
My immune system's compromised as I don't have a Spleen and I do have a variety of auto-immune conditions that affect other organs and make life difficult but now this wheezy rattling chest is becoming much more demanding, so I take my 2 Penicillin tablets daily and 2 Clarithromycin, 3 times a wk, + vitamins of course.
I've torn up my organ donor card as I've nothing that would be of any use to anyone now. lol
Ditto on the organ donation. My organs wouldn't exactly have a queue waiting for them either. But as they're the only organs we have, we must continue treating them like royalty and hope they keep us alive for another while. I hope things improve for you and that we all get through this chiy winter.
Well we certainly aren't alone with our problems that's for sure.
Hope you stay well Argana, keeping everything crossed that I will too.
Take care
I agree with the comments that the word , disease, sounds threatening and hopeless. The term, condition, would be imagined as something that can be managed with treatment. Perhaps another word altogether could be found ? Disorder, not a bad choice, plenty of funding and research comes under that term.
Polly4acre
I agree with everything Argana says, for the same reasons (pride, vanity) and also downplay my breathing problems to my friends - they know I need oxygen because my lungs don't work so well and I leave it at that.
I understood the survey though, to be asking for the wording to be used when informing the public, and for that purpose thought we should go with 'disease' though I too don't like the connotations of that - we’re not contagious - but 'condition' doesn't seem strong enough. So agree with Polly too - In my comments to the survey I also said maybe another word could be found, and suggested 'disorder'.
'Disorder' as suggested by Jabber and Polly is a good compromise. Jabber, I am so reticent about my condition that even my husband doesn't know the full extent of it. My adult children have no idea at all and I see no point in telling them before I have to. That is why this forum is such a Godsend and somewhere we can speak openly and honestly.
Agree Argana and flibberti : I AM NOT A SUFFERER!!!
I loathe this term and used to argue constantly and be faced by surprised faces at my BE group - it's so prevalent and accepted as standard that it's hardly ever questioned. But it feels such a martyred description, i won't see myself that way. I manage my condition, i live with it, I DON'T suffer it.
Years and years ago, I was turned down as a blood donater because I was on medication. I haven't volunteered since. A few times I expressed interest in trials that were running at the local university and was turned down every time because of meds. So I can only laugh at the thought of the reaction I'd get with my present drug regime. Impossible not to laugh because otherwise one might just have to cry
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Managing a long-term condition?
This Age Thing.
Vaping or Nebulising ? - disgraceful ! ....
