Worst things people have said/what not to say to someone with a lung condition

[servewithmintsauce]

1. "look, you're not breathing right…iiiiiin….ouuuuut…."

I know I'm not breathing right, I'm having an attack! I can't breathe!

2. "take DEEP breaths!"

Again, can't breathe, so...

3. "you're just panicking!"

Yep, and that's why my lungs are silent, right?

4. "oh I get a cough sometimes too"

Oh poor you. Now go away.

5. "you got that from smoking, right?"

(ftr: I know some people on this forum _did_ get COPD or lung cancer from smoking; this is one for the never-smokers with lung conditions)

6. "you want a fag?"

Do you want to stand there while I punch you in the niddies? Nah, thought not.

7. "oh well I had x infection last week, I still came to work/school. Why can't you?"

Because I couldn't get out of bed this morning because my lungs hate me.

8. "but I have x too, and I only have to take some blue occasionally…"

Well, lucky f---ing you.

9. "_I_ refuse to let x stop me doing the things I love!"

Yeah, maybe, but I currently can't do my favourite thing (ice skating) because I'm recovering from a life-threatening exacerbation and 2-week hospital stay so…thanks for rubbing it in and all, I really needed that(!)

10. "have you tried x juice/y diet/z tea?"

Yep. And if I haven't, it's because it's bol--cks anyway.

11. "have you tried..?"

YES.

12. "you look fine to me…"

And your med school degree looks non-existent to me…

13. "weakling."*

Nah; I'm probably stronger for this than you'll ever be.

14. "are you _sure_ you need x med?"

Pretty sure, yep.

15. "aren't you worried about all the meds you're on?"

Well I guess so, just a little…but the alternative would be dying, so with all due respect, no.

16. "you'll grow out of it."

I'm 17.5yo and 4'10"; I'm not growing out of anything, not even my clothes.

17. "it could be worse."

Yeah, I know. Not necessary.

18. "at least it's not fatal!"

It could so so so easily be. Just because it isn't HIV or cancer or heart failure doesn't mean it isn't or won't be fatal. My gran has COPD which will probably be the death of her. I've had 3 life-threatening asthma attacks this past couple of months which could have killed me. Asthma takes 3 lives every day, and COPD more. So no, it is fatal, actually.

19. "you're just unfit."

I may not be the fittest specimen in this world, and I do need to lose weight, but I'm not 'just' unfit. FYI I play ice hockey twice a week and skate at least once a week, as well as roller blading outside of the rink most days, so fitness isn't a huge factor. Also, I don't think 'unfit' would be the cause of my lungs closing up because I breathed in some of your e-cig vapour.

20. "oh that's nothing. My….(long spiel about family member or friend or personal problem of the day)"

Again, no words.

21. "yeah well so have I, _I_ don't make a fuss about it."

_You_ can take a puff of Ventolin and be fine. _You_ get new inhalers because the expiration date has passed. _You_ don't have to get up an hour earlier than you'd normally need to and go to bed an hour later because you have so many meds to do. So no, of course _you_ wouldn't make a fuss about it.

22. "oh well at least it's just asthma."

It isn't 'just' anything! (TBH I think any phrase starting with 'at least' should be banned in medical talk. Like, it's not helpful, and it's just making the other person feel like you couldn't care less about them, like their problems are invalid. It's unfair and unnecessary).

23. "oh you're far too young to be ill!"

Oh, sorry. I guess I'll just tell my lungs to pack it in already because I'm too young to be ill! Great idea!

24. "oh I see…ah, did you have MMR?"

Yes, I did. No, it's not relevant. At all.

25. "back when I was little, no-one had asthma, now everyone has it!"

Back when you were little, kids with asthma died before you met them, and the population of the world was far smaller, and genetic diseases as a whole were less prevalent, and have increased in prevalence recently due to people with atopy breeding with other people with atopy to make little children with atopy. So yeah.

26. "that's caused by…"

..my genes. That's what this is caused by. Atopy runs in my family; both my mum and my dad have related conditions. It isn't caused by any vaccines, or foodstuffs, or chemicals in my food, or GMOs, or super-cleanliness, or medicines, or any of that. No. It's just my sucky genes. OK?

27. "my chiropractor/naturopath/homeopath says x condition is fake/vaccine injury/curable."

Asthma is not fake (I wish…). 'Vaccine Injury' as a notion in general is pretty, er, wishy-washy, but saying vaccines caused my asthma is like saying vaccines cause autism; it's irrational and bull. And 'curable'? I. Wish. And. I. Wish. That. Every. Day. But sadly it is not the case.

28. "you just need to drink more water."

And you need to read less woo.

29. "it's all in your mind."

Hahahahahahahaha…oh, you're serious. Riiiight.

30. "I can't believe you're letting it limit you like this!"

I'm not letting anything limit me. But sometimes things just do. I will go back to hockey, I will get back on that ice, I will..but right now, I can't. And that really sucks for me.

31. "you don't have x condition."

You also don't have any medical training whatsoever so please don't try to diagnose me!

32. "you need to cut out dairy and gluten. Humans aren't made to digest these."

Actually, I'm not lactose-intolerant or coeliac, so I have the necessary enzymes to digest lactose and gluten. So actually, I'm not sure what species you think I am given your conviction that I can't be human (Idk, cow, maybe?) but whatever I am, I can digest dairy and gluten products, so cutting them out would be cutting out two decent sources of nutrients and one very important source, unrivalled by other milks, of calcium and Vitamin D3, both very important to me given that I am on steroids. I swear, if I hear the 'humans aren't made to digest dairy' BS one more time, I might just slap someone!!!

33. "you should try acupuncture."

Acupuncture only works for subjective conditions, such as back pain. Objective conditions such as asthma have showed no improvement in lung function as a result of acupuncture in DB-RCTs, despite patients feeling better. So no, I'd rather not have needles stuck needlessly (pardon the pun) into my flesh, thanks.

34. "your energies are blocked."

My..energies..are..blocked? Well darn it there I was thinking it was my airways. But no, you said it was my 'energies' (whatever that means) so hey, I guess you must be right(!)

35. "you just need to get out more."

WouldifIcould.

36. "oh stop being so melodramatic!"/"asthma attacks aren't life-threatening!"

(said to me when I told someone how I had had a life-threatening asthma attack) Well, given that my chest was completely silent, I was slipping into respiratory acidosis, and I was completely unable to breathe..nah sorry, it was life-threatening and I genuinely could have died.

37. "you don't need x inhaler."

Yes I do.

38. "asthma inhalers only treat the symptoms!"**

Just because they don't cure asthma doesn't mean they only treat the symptoms. Sure enough, the symptoms are treated as a result of the inhalers, but actually the inhalers treat the underlying inflammation which causes the symptoms*** so…

39. (walks into class, sits down) "OMG I have this cold, I'm literally dying."

a) no you aren't, b) no you aren't, and c) no, you really are not.

40. "ooh can I try your inhaler?"

No. No. No. Aaaaand….let me think….no, still no.

---

Has anyone any to add?

-- Matt

---

*I have only had this one once, and it was meant as a joke from one of the guys at ice hockey..but it stuck. Because I feel weak when everyone else is grafting away at drills and I'm at the side, using my inhaler. I've learnt to just focus on myself in those moments when I need some lung juice, even though nobody actually minds my asthma. But 'weakling' stuck. It shouldn't have; it was a joke. He didn't mean it. But it stuck.

**funnily enough, this one almost always comes from homeopathy advocates, which is ironic given that homeopathy is all about treating the symptoms, and tests of objective measures such as peak flow and spirometry in asthmatics treated with either steroids or homeopathy, it has been found that the steroid group and homeopathy groups experienced symptomatic relief, but only the steroid group experienced decrease in lung inflammation and improvement in lung function tests, showing that homeopathy (sugar pills) treated only the symptoms.

***in short: corticosteroids (prednisolone, beclomethasone, fluticasone) suppress the immune system locally (in the lungs), reducing the response of the WBCs, thus reducing inflammation; leukotriene receptor antagonists (montelukast, zafirlukast) block receptors in the lungs to chemicals called leukotrienes which, if they were to bind, would cause inflammation as part of the immune response; anticholinergics (ipratropium, tiotropium) inhibit acetylcholine (ACh) production in the lungs, decreasing spasticity of smooth muscle; beta-2 adrenergic receptor agonists (salbutamol, salmeterol, formoterol) bind to B2 receptors in the lungs, causing the smooth muscle to relax; and theophyllines are anti-inflammatory agents _and_ bronchodilators.

[knitter]

Hi, I do so agree.....I have had many of those remarks made to me too.

'It's all in the mind'. Mmmmm..why am I up in the middle of the night coughing and wheezing if that were true! I know anxiety and conditioning to certain situations make my breathing worse but there is an underlying reason .

Take care

[servewithmintsauce in reply to knitter]

Indeed. And not being able to breathe makes people anxious sometimes as well!

[Hidden]

Think my favourite one is ' I can't breathe, I've got a chest infection' from a normallyhealthy person, closely followed by 'boy that was a good cough' accompanied by a look of extreme distaste as ! emerge from a 'clear out' at a public loo. Bless them!

[Hidden]

Oh and the endless 'advice' on which foods to eat and supplements to take which cured their cough so they will cure mine and lectures on the over use of antibiotics causing drug resistance- don't we just know it!

[servewithmintsauce in reply to Hidden]

Ooh yes I forgot about the antibiotic resistance ones. "MY doctor NEVER gives antibiotics for just a cold!!! Maybe I should see yours next time if he just gives them out to everyone and anyone."

^ genuine example XD

[sassy59]

We must be more fortunate Matt because people have not made such inane remarks to Pete other than "oh you look well " yeah looks are deceptive.

Wishing you a great Christmas and new year and thanks for an excellent post.

Xxx 🎅🎄🎁

[MarieW-F in reply to sassy59]

That's the one I get all of the time. You look really well. I always just thank them. I can't be bothered to go into how I really feel.

[Billiejean_2 in reply to MarieW-F]

Marie, as one of the people who said this to you, it was sincerely meant. And of course I know 'how' you really are but despite that you do look great.

[servewithmintsauce in reply to Billiejean_2]

I don't usually mind the 'you look well' comments; it's only when they're said in that sceptic voice, like I've just said how bad my lungs are and they've gone "you don't _look_ sick.." or "you look fine to me"!

[Billiejean_2 in reply to servewithmintsauce]

Well I was really irritated a few weeks ago when the doctor who told me my left lung was completely destroyed, followed it up by saying 'but you are so active and you don't even look like a respiratory patient.'

Would that cheer you up in those circumstances ?

[servewithmintsauce in reply to Billiejean_2]

No way! Idk, maybe they're trying to make you feel less cr-- about the state of your lungs..but it doesn't help, does it!

[MarieW-F in reply to Billiejean_2]

Yes I know I do! At my last appointment at the Freeman I was sitting there looking at everyone around me thinking even I was a fraud. I suppose its sort of the opposite which is even when I feel really ill I don't look it because people can't 'see' your lungs or see how ill you feel reflected in your external appearance.

[Katinka46]

Morning Matt, thanks for joining us. So many here will identify with those comments.

Love and all best wishes

Kate xxx

[BugsBunny]

Hi Matt, I was telling a friend that I can no longer do the cooking as I can't go near the gas stove as I am on oxygen 24/7. I also do not have enough energy to walk around the kitchen and get pots or pans out of the cupboards. Her comment was "Some people will do anything to get out of the cooking". I was too stunned to reply.

[fishtail in reply to BugsBunny]

what an idiot.

[servewithmintsauce in reply to BugsBunny]

Ugh that's so ignorant >

On a side note, do you have the same problem with fan ovens/electric hobs? Maybe with some assistance in getting pans and everything, and an electric oven, if you're really into cooking it could still be possible? DLA might cover that if you're interested..?

[Jaysha in reply to BugsBunny]

Some friend.! My mum and i are just putting everything in the oven and microwave as my mum is on oxygen too. Have a lovely christmas.

[Jaysha]

Exactly. Walk in our shoes if not buzz off and leave us to it. Always some smart person thinks they know better. Best one is my mum had copd for yonks said i would go and get that sorted out!!!! Have a lovely christmas

[servewithmintsauce in reply to Jaysha]

Oohhh yes. A couple of additions in light of this:

"Ooh you should get that checked out.."

"That's a nasty cough!!"

and people who go "ooooooh!!" in a sympathetic pained voice every time I cough..seriously, it was nice to have the sympathy the first time, but I'm going to cough quite a lot while I'm here and now it's just annoying!

[Hidden in reply to servewithmintsauce]

I get people saying that's a nasty cough I say I wish it was just a cough

[starveycat]

I love it when someone says there is always someone worse off than you. Great comfort, I am struggling enough without having to think of anyone else's suffering. Matt your knowledge and your courage are amazing , I hope and wish you have a great Christmas ♥♥♥

[servewithmintsauce in reply to starveycat]

Oh hey, nice to see you over here! You probably noticed the similarities between this post and my one on AUK XD

Yes, I hate this one. I already care a lot about people with cancer or AIDS or any host of other diseases which are imminently worse than mine, so I don't take to people reminding me of them as if I didn't already know!

[katieoxo60]

Thanks for that Matt, the list is endless of thoughtless remarks. not sure this was on the list, you are not disabled you don't use a wheelchair. Have a good Christmas and keep hinting to those thoughtless people in the new year best wishes and take care.

[servewithmintsauce in reply to katieoxo60]

It wasn't on the list but that's another good one! I often hear about people with so-called 'invisible' conditions getting snide or just downright ugly notes left on their cars when they park in a disabled bay from people who think they know everything!

Also this is a little similar to PE teachers who insist you're fine to do cross-country because you can walk just fine..

[MarieW-F in reply to servewithmintsauce]

Been there, had those comments.. Its my only concession to this illness. I claim no benefits and it allows me to live life as normally as possible while still working full time. I could quite happily punch these people.

[Jakisu]

Matt, you honestly should take up writing. Even though the subject is a bit of a painful one, you just made that such a good read! You have a gift

Hope you have a really good Christmas devoid of idiots and full of all the best kinds of supportive people! Oh, and a healthy ice-skating filled 2016!

[servewithmintsauce in reply to Jakisu]

Haha thanks! I do have a blog, actually

[bayleyray-uk]

Hi Matt,

You will never change how people react to the outward signs of Lung Disease, most of the time its a gut reaction because people feel they must offer advice to make themselves feel better and they are afraid they will need to do something more positive to help.

This time of the year I get particularly rabid if somebody say's an inane remark and any saintly understanding I may have through the rest of the year goes straight out of the door and I usually go for the jugular. It doesn't help me much apart from some instant gratification at the look of horror on somebody's face.

Oh my Christmas cheer has just run away again, I'm now off to practice my Ho Ho Hoing.

Cheers

Sue

[servewithmintsauce in reply to bayleyray-uk]

I often try to educate rather than get annoyed (or I get annoyed internally and maintain a calm exterior). You're right; many times people are just trying to help. I know my mum often says how something is "oh probably just related to x medicine" or that she is "also a bit tight from the dust", but she's just trying to stop me worrying too much. And lots of the time people want to help you through stuff.

I think my friends wanted to be there and see me get completely 'back to normal' again..but they've come to realise it doesn't work like that so I get continually fewer of them asking how I am and do I need anything and can I do x or y or z with them..it's nice in a way that I'm not having to find a response to "how are you, are you better now?" but it can be a bit lonely.

[mickyjoan4]

know what YOU Mean, I have had 'oh everyone has copd now' but he best one was when I went to back doctor a long time ago and I had to lay on my front and I said I cant breathe and he said 'well yes you can otherwise you'd be dead' and he laughed at his little joke , I never went back, ah well. happy Christmas x

[servewithmintsauce in reply to mickyjoan4]

Ignorant > Plenty of times I've been literally unable to breathe and I've still been alive!!!

[fishtail]

everything you have said rings true,I get so angry at "healthy"people thinking they "know"how you feel.x

[joyce741]

my husband just tells people I love my scuba diving to much lol

[Hidden]

Just ignore them I went to my doc once I'm not here about my breathing it just came a long with me to keep me company doc said you got a pain in your big toe. One doc used to always say to me oh here comes dearth Vader never bothered me I just laugh with them people are just ignorant when they don't know what to say. And as for pain if you can't see it it's not there have a good day

[servewithmintsauce in reply to Hidden]

Haha I have to say I quite like the Darth Vader one!

[Snodgrass]

Brilliant, so agree, have heard most of them too. Exceptionally interesting and well written. I wish you a happy Christmas and a new year as free of attacks as possible. Keep on skating you show so much courage and a sense of humour too.

[Offcut]

I was getting a disability bus pass. I was told to bring in medical evidence because "I did not look ill" even though I showed them my blue badge. When I bought in all my letters from my heart and lung consultants. They saw all the long names and asked for my blue badge took my photo and said it will come in a few days time. When it came it ran out when the badge did! So I called to ask why? They said as their is no medical evidence it will run out at the same time as my badge! The person who did mine just took the easy option?

Asthma used to be treated with valium as they thought it was a nervous condition.

It was on the TV about lactose issues start from Turkey down as the population rarely drank cows milk. So as there was more cows and their milk drank the humans in the area adapted to tolerate it. Humans are I think the only ones that still drink milk after being suckled?

[Billiejean_2 in reply to Offcut]

I often think a little Valium might relax my muscles allow a little respite from constant tightness. And to be honest, looking at the cocktail of drugs I take and how little they do for me, I wonder would we all be better off with Valium.

[Offcut in reply to Billiejean_2]

I had to take my nitrate heart spray the other week and it got rid of my back pain as it acts a as muscle relaxer as well? GP did not recommend I use it for that?

[servewithmintsauce in reply to Offcut]

We are, and it is a little weird when we think of it that way, but it does irk me so when people say about how "humans aren't made to drink cow's milk"; like, I clearly was, I can digest milk, I evidently was born with the correct digestive enzymes..so does that make me non-human..? No, didn't think so haha humans adapt, similar to bacteria which have lac operon.

Gosh, I know. It's scary sometimes to think of the things asthmatics went through not even very long ago!

[Offcut in reply to servewithmintsauce]

The programme stated we were not made for drinking cows milk but we adapted though evolution but where goats milk is the main a large proportion cannot drink cows milk still.

[Billiejean_2]

One of my pet hates is people who moan about how exhausted and drained they are because they are 'on antibiotics'. On them for a week or 10 days - how very exhausting indeed !

'Do you have an inhaler ? My child/brother/cousin has that ( asthma) and he has to use an inhaler'. Gosh no, I'm obviously not 'really ill' like your cousin, what would I be doing with an inhaler ?

'Are you better'? This, after you've been in hospital or sick for several weeks. You're not expected to be sick for more then a week, after that, you're just imagining it.

My granny/ aunt/ second cousin once removed/ had that and she took cider vinegar. Cured it completely.

My best friend who is extremely supportive but probably exhausted from it all by now. And who can blame her ? We talk on the phone most evenings and she unfailingly insists on telling me how I am. No matter what we are talking about, it will suddenly be interrupted by 'you don't sound bad at all tonight' and 'I can always hear it in your voice when you're really bad.' I know she means well but it always annoys me. I know exactly how bad or good I am and don't want to have it dragged up in every conversation. Intolerant of me probably, but we're only human.

[Offcut]

I get that when I mention I was in ICU. They reply with yes my uncle went in there after an operation for a day he is fine now. I was in 32 days 12 in an induced coma and on an oscillator for 10 days fed though a tube breathing though my trachy with 2 chest drains and in MOF. I was back in work though 5.5 months later. so only minor?

[SquirrelsHolt]

Yes the one that says it's all in your mind. I mean if Id let every little thing that upset me,upset me, then I may have been as bad as you! You've just got to get a grip on things and stop feeling sorry for yourself all the time. You can cope there's no reason that your condition means you should be feeling down most days. You just need to be more positive! Pull yourself together. It's CHRISTMAS !!!!

[servewithmintsauce in reply to SquirrelsHolt]

If you read my other posts, I'm frequently positive...

[SquirrelsHolt in reply to servewithmintsauce]

That's excellent. I was merely commenting on that particular post you made.

[servewithmintsauce in reply to SquirrelsHolt]

We all have the right to vent every now and again.

[CanadaPaul]

Those are right on! I've got one to add. When I was in the hospital with pneumonia and fighting for every breath, a visitor came in and when they saw the view out the window they said, "This view is worth being in the hospital for!" I would have given them my lungs in a heartbeat. It's too bad I was speechless and breathless.

All the best to you, Matt! 🇨🇦

[servewithmintsauce in reply to CanadaPaul]

You should've asked them to trade XD

_Nothing_ is worth being in the hospital for..although it was nice and festive last time I was in a couple of weeks ago, and we had decorations and some little children from a local primary school came to sing

[CanadaPaul]

Another one just came back to me. I need high-flow oxygen non-stop. I was in the hospital for an angiogram and the nurse unplugged my oxygen tubing from the wall. When I asked her to please hook it back up, she snapped, "Oh, don't worry about that right now!" We had a bit of a scrap over it.

[servewithmintsauce in reply to CanadaPaul]

Sure, I won't worry. I'll just let my sats drop so I die, how's that sound? At least you don't worry when you're dead! *if the sarcasm isn't dripping on your screen right now something is wrong*

[servewithmintsauce in reply to CanadaPaul]

I wonder why she thought it wasn't important?!

[ineedair]

'You don't look very poorly ' 😠

'Have you caused your illness by smoking?' 😠😠

'Well your young so you'll be ok'

'I have a bad cold so I know how you feel ' 😠

The list goes on and on but this post still made me smile so THANKYOU 😆

[servewithmintsauce in reply to ineedair]

I forgot about the "you're young you'll be fine" one..been tempted to respond with "well you're old, you're gonna die" on occasion haha

Ohhhh yes, people comparing their sniffles to my life-threatening asthma attack…yeah, sure it's the same thing(!)

Haha thank you

[suefreewoman]

"Oh, I know someone who had C.O.P.D. for 30 years" or "Yes, I've got a cough, too", or "All coughs originate in the throat", or, yes, "You need more exercise". And on and on.

[Offcut]

I get "You do not look ill" a lot. I have replied with "It is not my face that is ill?"