What embarrasses you the most about y... - Lung Conditions C...

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What embarrasses you the most about your copd or bronchiectasis.

carolg1 profile image
84 Replies

Any answeres please just wondering.... are we all the same except male or female ????

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carolg1 profile image
carolg1
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84 Replies
newlands profile image
newlands

I hate it when the phone rings and I am out of breathe and I don’t like it when someone catches me when I’m out breathe

mnonchan profile image
mnonchan in reply to newlands

I feel exactly same

carolg1 profile image
carolg1

If someone puts an answer that is the same as your just hit the like button xx thanks

megannell profile image
megannell

" Thankfully nothing embarrasses me about my condition... Megan..."

hypercat54 profile image
hypercat54

There are mainly copd sufferers here because it is a lot more common. There are some bronchis though and a sprinkling of others including CF, IPF and PF, and sarcoid (can't spell it) and RLD. Some have asthma too and others have 2/3 different lung diseases.

To answer your question it used to be my cough but since I packed in the ciggies I don't cough much. x

Carnival567 profile image
Carnival567

I gave up being embarrassed about my collection of illnesses, including having to use mobility scooters and walking stick, and more recently oxygen. Life is for living not embarrassment! Mind you I did feel embarrassed when I tripped over the hairdresser ‘s doorstep and cut my face badly a couple of weeks ago! Lying in the doorway with lovely concerned people around me ,and nosy passersby , waiting for the ambulance for nearly an hour was moderately embarrassing. I spent a night in hospital too! What an idiot!

Caspiana profile image
Caspiana in reply to Carnival567

That is awful Carnival567 . What a horrible thing to go through. I hope they cuts are all healed? xx 🌿

Carnival567 profile image
Carnival567 in reply to Caspiana

Almost completely healed now thank you Cas, the worst bit was the grazes I had on my cheek and nose from the point of view of looking awful, but the cut on my eyebrow still healing. In this small town everyone is very kind though. I hope you are keeping as well as possible in this heat xx

Caspiana profile image
Caspiana in reply to Carnival567

Take it easy please Carnival567 . I am okay, thank you for asking. xx 🌿🌸

Lizzie34 profile image
Lizzie34

I feel most embarrassed when I start coughing in church and the theatre

Lindy-loo1949 profile image
Lindy-loo1949

Oh my Lord! When I cough and the phlegm gets stuck in my throat and I have to continuously try to clear my throat because if I don't I sound like Kermit the frog. 🐸

Laddybug profile image
Laddybug

I was only embarrassed by my cough especially if I was in a movie theater church or restaurant wow imagine the look on people faces but I no longer cough went into hospital 2016 had pheumonia stayed 12 days after that was sent home no cough I'm on oxygen and two inhalers so life is great and as long as I can breathe I'm going to enjoy it I refuse to give in to this disease I still do some of the things I normally did before I got copd just now I have to do at a slower pace and I'm fine with that if I'm out and people are around me or need to get pass I just say you can go ahead I'm taking my time I'm not in no rush what ever is gone still be there when I get there lol

lisajawea46 profile image
lisajawea46 in reply to Laddybug

Good for you Sassy, I feel the same way and live my life, not watch..

Lizzie34 profile image
Lizzie34 in reply to Laddybug

Can I ask what is PSP?

carolg1 profile image
carolg1 in reply to Lizzie34

Where does it say PSP Lizzie in who’s post ?

sassy59 profile image
sassy59

Good question carolg1. Pete says coughing/choking in a restaurant. He has sarcoidosis and COPD and coughs quite a lot. We go out though and just deal with things.

Hope you’re well. Xxxxx

Ergendl profile image
Ergendl

Overdoing things and having to sit down anywhere with my head low and my arms on my thighs as I try to get my breathing back in control. Especially when it's in a place with no convenient chairs or low walls to sit on.

B0xermad profile image
B0xermad in reply to Ergendl

Definately an annoying aspect

Chris_Ogilvie profile image
Chris_Ogilvie

When I run out of breath in the street, can't talk momentarily while focus is on diaphragmatic breathing - noticing (well meaning) passerby start dialling 000, believing heart attack/stroke in progress! - same time I'm trying to wave and signal I'm ok , I'm ok. please don't call, to avoid an ambo crew waste valuable time.

Alfiebax2 profile image
Alfiebax2

I don't get embarrassed about my condition .....because I can't change it .....and if it has caused me any problems I find most people are sympathetic we are unlucky in that it is a hidden disability .

Love Babs 💐😊

After a lifetime of all of the symptoms that others are describing I refuse to be embarrassed. I do become very angry at the ignorance and insensitivity of others though. Many of them my friends a colleagues. They really do say stupid things.

‘You’re sounding chesty today’ - this week when I have battled the heat to get to my volunteering job.

Standing outside the loo and then saying ‘that’s a fruity cough you have.’

I could go on and on but I’m sure I would be playing your own records.

Mostly I ignore it but sometimes I just remind them that I have bronch with a brief description if what this means to ny daily life and if they don’t like it don’t stand there listening. That brings them up to speed!

HungryHufflepuff profile image
HungryHufflepuff in reply to

Good for you! I don't think anyone should be embarrassed about their health. Which is easy to say, of course. The fault is with the person that has issues with our health, we shouldn't feel embarrassed for their discomfort. My dad refused to get a wheelchair because he was embarrassed about what strangers might think so he didn't go out. Then we got him a wheelchair and he went out and loved going out again and stopped caring what people thought. If they can't deal with it, it's their problem. I try to not be embarrassed about my coughing and shaky hands but not always easy especially when faced with silly hurtful comments. Why do some people feel they have to comment on someone's condition, especially when they have no idea about it.

in reply to HungryHufflepuff

You are so right. What a cheek they have! I am so sick of people telling me that I have lost weight again and look too skinny ( even my own son). Would they dare do that body shaming if I was hugely overweight I wonder.

UHelga profile image
UHelga

I was only diagnosed last year and whilst I’m not embarrassed about having copd or coughing all the time, what gets to me is having to ask family and friends not to wear anything smelly in our house (or when we meet) or to stay away when they have a cold or other virus. The trouble is people are forgetful and then you hear ‘oh it’s just a little cold and nothing to worry about’, and I have to repeat (yet again) how smells and bugs affect me. Maybe it’s still early days and it’ll sink in eventually?

O2Trees profile image
O2Trees in reply to UHelga

Yes, so much ignorance. Ive got to the stage where a low level virus circulating in the community will put me in hospital with pneumonia. People don't have a clue so need educating.

UHelga profile image
UHelga in reply to O2Trees

Oh no O2Trees, that’s tough! My dilemma is often what to say so it educates people in a neutral way and doesn’t come across as nagging.

Caspiana profile image
Caspiana

I am not embarrassed by my lung condition. I do get annoyed when people stare at me because I am on oxygen, or random people ask me if smoking caused my lung disease. That really annoys me. 😡😑

UHelga profile image
UHelga in reply to Caspiana

The smoking bit really gets to me too Caspiana as not only haven’t I smoked for decades, I never smoked much anyway. In my case it’s usually doctors and nurses who make assumptions :(

Caspiana profile image
Caspiana in reply to UHelga

I do understand UHelga . 😐

My disease was caused by having a long term autoimmune disease, however, even if it was caused by smoking, that is no one's business but my own, surely. And I don't think anyone has the right to make assumptions or be judgemental, very much like the doctors and nurses you deal with who should know better than the general populace. xx 🍀🌱

UHelga profile image
UHelga in reply to Caspiana

Very true! Well said @Caspiana x

ladytelita profile image
ladytelita in reply to UHelga

Agreed. It’s always the first question they ask. When I was younger and suffered a lung infection my sons consultant asked if I smoked. When I replied in the negative he was very surprised. This was before I was diagnosed some ten years later.

B0xermad profile image
B0xermad

Coughing and slight bladder control issues that go with it. Lethargy

Balloo profile image
Balloo

Being embarrassed about being ill you kidding.

Shirleyj profile image
Shirleyj

Coughing fits, particularly when I had to do jury service years ago, I had to sip water constantly.

Also when I've had an exacerbation or a chest infection people expect me to be better after a week and running around again.

barbs47 profile image
barbs47

I’m embarrassed cus I find wearing a bra so uncomfortable and feel very self conscious, I’ve lost so much weight that my tummy is now bigger than my boobs and I think I look like Mrs Weeble lol xx

in reply to barbs47

Me too barbs. I’m going for the Tallulah from dinner ladies look.

bayleyray-uk profile image
bayleyray-uk

I suppose I get the most embarrassed when I'm out and about is the coughing which can start the need for a loo or coughing up mucus (I feel like a kitty with fur balls). Over the year coughing has got worse and my control over it has disappeared. Now if I have an attack I just hope I can get to somewhere semi private so that I can get that gunk out of my lungs.

Cheers,

Sue

corriena profile image
corriena

I get embarrassed when im standing in a queue and my heavy breathing sounds like im sighing as if im being impatient. I have had more than one shop assistant tell me they are going as quick as they can. I dont usualy explane as if my breathing is bad speech is a real effort.

Your question gave lots of us a chance to offload issues which we usually keep to ourselves, knowing that we have an empathetic, non judgemental audience. We are all holding hands and that is so uplifting.

carolg1 profile image
carolg1 in reply to

That’s what I did it for you have taught me so much about this disease I thought I bet there are lots like me I’ve spent five years making myself worse instead of facing things head on and dealing with it , hiding it is dangerous and adds to our anxiety.... so my policy has changed and slowly it is making my life more manageable and I have found a new zest so read all the answers friends and you have nothing to be ashamed of even if you did smoke many didn’t know the dangers of smoking and many never even smoked, so wake up tomorrow and be happy you have , try a day with a lot of laughter in (great for the lungs) and if you can sing also great for the lungs, I’m getting on my family’s nerves now haha but tough it’s for better reasons..... it might not help with my cancer but who knows ...., have a lovely breathe easy day xxx

in reply to carolg1

Great respect Carol. You have come on so much and I hope it's all upwards from now on.

Candyred profile image
Candyred

I use to get embarrassed, upset, frustrated and angry.. I hated having to ask anyone for help.. I just got a new walkie with a seat on it to help me stabilise myself when walking about .. I absolutely love it! People stare at me, some stop and just stand there staring at me! .. now I just stop, sit on my wee seat and stare back .. so they now feel more uncomfortable than I do!..

in reply to Candyred

Love it!

Caspiana profile image
Caspiana in reply to Candyred

Hahaha😂😂😂😂

Patchpoppy2 profile image
Patchpoppy2

The constant coughing, makes me more and more breathless and slightly incontinent...

Grayjay profile image
Grayjay

Hiya Carol,

Regarding your scooter. I have not long bought one and find it fantastic. What a difference it makes. I don't feel embarrassed but get quite amused when some people raise their voices or talk condescendingly to me. Most people are very polite so it improves things for me in that way.At the Zoo one day I came up behind a couple who were walking all over the place . The woman stepped in front of me not realising I was there and gave her a bit of a shock. She turned to her husband and said to him " You've got to watch them haven't you"😂 without a care if I'd heard her or not. Won't tell you what I said to her.

carolg1 profile image
carolg1 in reply to Grayjay

Plain n simple rude and ignorant they were in the right place the zoo lol x

Ergendl profile image
Ergendl in reply to Grayjay

I've had similar when propelling my wheelchair (usually only used in an airport). They step in front and then blame me when my unnoticed footplates catch the back of their legs because they're a lot further forward than my more visible body.

Marina02 profile image
Marina02

Not being able to keep up with my friends when out walking, and trying to explain why I can't - sometimes I just don't bother going out with them and make an excuse - it's not the right way I know but people who have not experienced extreme breathlessness just by normal activities, find it hard to understand

UHelga profile image
UHelga in reply to Marina02

Oh I’ve done that, make excuses that is. Sometimes it feels so much easier!

treesie profile image
treesie in reply to Marina02

Agree. People are rude and won't slow down and let the door shut on you instead of holding it open.

mskpjb profile image
mskpjb

Having to stop and drop my cannula down so I can blow my nose, which seems to run all the time I'm out. Then having to stand still 'cos I'm breathless and have to control my bladder. Sheila xx

ladytelita profile image
ladytelita

The coughing which leads to either sounding like I’m going to be sick or bringing a globual of phlegm in my mouth which I have to spit out. If I’m driving that means stopping, but worse is if I’m in company, especially people who don't know about my conditions (brittle asthma, bronchiectasis, inhaled allergies). That can be embarrassing. However most can’t tell I’m embarrassed since I’ve already gone beetroot from the coughing! I randomly cough a lot anyway which I’m used to but strangers tend to give me looks or ask if I’m ok. Explaining it’s normal often doesn’t help.

carolg1 profile image
carolg1

Someone gave me a tip about your bladder sounds daft but worked for me , I do pelvic floor squeeze and release exercises but if you feel a wee coming on let your mind talk to your bladder and tell it to wait a few more minutes till I get to the loo keep talking to it till you get there try it lol xx

I can tell you of an embarassing experience at my GP's waiting room some years ago. I went for my flu jab and while waiting I had a coughing fit and choked. A couple got up and walked to the other side of the room and away from me. The husband said very loudly "You're not supposed to come to the doctor when you have flu." I said (equally loudly) "I don't have flu". So he added "I don't care what you've got, we don't want it" I was incensed and said "you can't catch what I have, it's a lung disease" By this time they settled down far away from me and thankfully my coughing and choking stopped. But I was furious, and very embarassed. :-(

Grammyluvs profile image
Grammyluvs in reply to

I’ve had the same experience in church. I cough a lot sometimes and after church the lady in front of me turned around and said Was that you coughing so much? In a very mean way. I feel like staying home and not going to church, but I’ve decided when I sit down to tell everyone around me, if I start coughing I’m not contagious but have a chronic lung condition. I hope it works.

UHelga profile image
UHelga in reply to Grammyluvs

Oh no, don’t let it make you stay at home. Your simple explanation should do the trick, think I might even borrow it:)

Izb1 profile image
Izb1 in reply to

How very rude, I cant imagine how that made you feel poemsgalore, I usually just ignore people but that would have made me see red. I get embarrased when I need to keep blowing my nose as I have so much mucus, its awful and can see by peoples faces how disgusted they are, I usually go to the toilet or away from people and have even got of the bus to clear my nose which in turn leads to me coughing for ages. Dont know the solution to these problems other than grow a thicker skin as you cant change people.

HungryHufflepuff profile image
HungryHufflepuff in reply to

That is so rude. I work part time in a shop. The other day I had a coughing fit and some man put his hand over his mouth in an exaggerated manner and said Why didn't you and your germs stay at home. When I got over the initial rudeness I said respiratory problems aren't contagious. Like what happened to either saying nothing, or asking are you ok 😒

Bubba39 profile image
Bubba39

I can't keep up with people when they walking and I have to stop.

Kristicats profile image
Kristicats

Having to say why I can’t do certain walks ie hills/ gradients . Specially with people the same age.😳

ann261 profile image
ann261

The coughing, embarrassed going to a cinema or theatre because I cough continuously

Stumpy55 profile image
Stumpy55

Having to go into the toilet when we have company, as I have to have the door open, so people are asked to go into kitchen. Trouble is, it takes me ages to sort myself out and then I'm too breathless to talk to anyone so I need to use my nebuliser and pump. 🙄

shouty profile image
shouty

getting tired easily and folks assuming its smoking related when damage caused by Haemophilis bug causing Bronchiectasis

Patchpoppy2 profile image
Patchpoppy2 in reply to shouty

shouty. I find that a lot. I have never smoked, but it's always assumed. People do say, give up the fags, you've brought this on yourself.. so rude. Asthma since 2 months old, bronchiectasis last 18.. Noone in my household smokes or ever did. Think before you speak...

skischool profile image
skischool

Looking in the mirror at a man who was once physically attractive with an athletic and muscular body and admitting to the reflection that i was probably the culprit of my own demise..........water under the bridge unfortunately and i still smile inwardly.

thin ski's and a cat that still loves me or is it the tuna? xx

carolg1 profile image
carolg1 in reply to skischool

Hi ski school, yes those lovely memories it’s the only thing this god awful disease can’t take from us, it takes everything else , our dignity etc etc ..... I could go on but I won’t too depressing

Kristicats profile image
Kristicats in reply to skischool

I try to ignore mirrors at all costs now🙅‍♀️

y_not profile image
y_not

I still apologise when asking where the lift is (I still work and visit clients) or a arrive at the top of a flight of stairs as a wreck, apologise during meetings when I have to suddenly gasp for air, apologise when I ask people to slow down as we walk ... I guess I got used to apologising for my COPD a long time ago and, if someone doesn't accept my apology then that's their problem!

Breathe easy, folks 😀

ClaraC profile image
ClaraC

I think my worst moment when I was in hospital very ill about 2 1/2 years ago with double pneumonia. Initially they isolated me in a side room while waiting for a bed in ICU. While I was having a coughing fit, a very unpleasant elderly lady burst into the room & started shouting at me that I shouldn't be in there, that I was keeping her awake & she'd just had an operation, I tried to apologise to her & say that I wasn't doing it deliberately, but she was not to be assuaged. This happened a few times & nursing staff shooed her away & apologised to me & said that I had every right to be there because I was very ill. There was little I could do as I was all wired up & the coughing was very painful, but it distressed me greatly to think it was upsetting others that I tried to get out of bed & go in my adjoining bathroom when I coughed & ended up collapsing & dying for a few moments before being being attended by the wonderful rapid response team. I was found a bed in ICU whose dedicated staff undoubtedly saved my life, but later found that I had to be moved from there when 2 masked consultants & 4 or 5 other masked staff appeared to tell me that I had contracted an agressive virus & would have to be moved again into isolation because of the risk to the other vulnerable patients in ICU. I am very grateful to have recovered from a virus that killed a lot of people that year across the country. However that lady, who had mental health problems, was actually right, I shouldn't have been there, but due to the pressures of understaffing & lack of beds, other people were put in danger. I have great respect & am immensely grateful for our NHS who are still dedicated to improve our health under such immense pressures through underfunding.

in reply to ClaraC

What a terrible experience !!!! Thank God you survived to tell the tale and also have enough compassion to recognise the anxiety of the others despite that lady's aggressive behaviour towards you. Take care xx

Nahja1241 profile image
Nahja1241

Before treatment I was coughing a lot and at the market people looked at me funny and I would be compelled to tell them I was not contagious. Then I was at my congregation meetings and would cough iincessantly. I am female.

Dubba61 profile image
Dubba61

Ooh! My squeeky voice. Sometimes loud, sometimes barely there at all, always wheezy. Also, thinking I can do more than I'm capable of. Eg: having to keep sitting down, when I'm having a little walk. Getting "out of Puff" just showering. Could go on...😊🌻✌️

I agree with most things already mentioned but I also find I apologise all the time to all in sundry....oh sorry I'm in the way...oh sorry I've been coughing ...oh sorry I'm so slow....oh sorry I can't go any faster....Oh sorry I'm wheezing...oh sorry I can't carry the coffee tray .....so sorry I need to sit down....so sorry I'm a burden on the nhs...sorry sorry sorry ......God knows how many times a week I'm apologising for being alive basically.:((((

carolg1 profile image
carolg1 in reply to

That’s one that annoys me too and when I say thankyou which unfortunately we have to say a lot I sound like Oliver lol ...., I try and say it with a bit of a punch now ....xx

in reply to carolg1

Lol you've reminded me I need to keep a sense of humour when I grovel lol or perhaps train myself to stop grovelling and be more matter of fact in my demeanour. Please Sir, I'm sorry Sir.......oh sod off lol might be more apt sometimes. ....begging your pardon 😀😀😀 lmao. Xx .....ohhhh excuse my rudeness!!!

carolg1 profile image
carolg1 in reply to

It’s the sense of humour that keeps us going, laughter is the best Toni’s and a good mucus rattler lol take care xxx

in reply to carolg1

Oh so true....better than any gadget. Lmao 😊😊😊

skinnylizzy59 profile image
skinnylizzy59

My friends are very good and understand about my illness but I still feel slightly embarrassed when I cough up phlegm and have to, discreetly, spot it into a tissue.

Take care everyone. Love Lizzy x

carolg1 profile image
carolg1 in reply to skinnylizzy59

I know this so well... stops you from socialising and many things.... grrr xx take care but just carry on it’s your life

skinnylizzy59 profile image
skinnylizzy59

Thanks carolg1. Look after yourself. Xx

lisajawea46 profile image
lisajawea46

I used to be embarrassed when I started wearing supplemental 02. I did it for 10 years and would not wear it in stores or around strangers. I had a tracheostomy before oxygen came on board and people would stare at the hole in my neck. Little kids were kind of scared of it. Long story short... I moved to a much lower elevation from 8300ft to 5200ft. Had to leave a 12 year relationship with a guy who didnt see the need to move. It was difficult and I was depressed like never before. I now dont need supplemental oxygen during the day unless I get a cold, my worst enemy. I do wear 02 at night. My goal is to move to below 2000 ft. I never need supplemental 02 at all at that elevation. I am stronger and feel kinda normal. After 2 respiratory failures, a heart attack from one them, and many hospital stays for years, Im thankfull to say I travel all the time on road trips with my 15 year old still beautiful dog Jenna. I know I will probably have to wear supplemental 02 later on and it will be ok. But until then I can control my diseases instead of them controlling me. All the other symptoms I have like out if breath, cant go as fast, have to say no sometimes, etc. I used to feel like I was weaker, and drew attention at times. I dont care anymore. People are curious. The people that l know and love never smoke by me, and most people care. Sorry thus is long. Never thought about your good question. Carry on, and be as well as you can. Life is too short, and good to think of embarrassment. 😊✌👣💞

carolg1 profile image
carolg1

Hi lisa, Just want people to lose the embarrassment and for sure the anxiety gets much less and then panic attacks become a bit less , I make fun of myself as much as I can without being over the top because of the strange noises I make when trying to breath or clear and it goes on.., hopefully all for the better, I’ve spent so many years miserable because of being embarrassed well not anymore, keep well xxx

TomTitTot profile image
TomTitTot

I agree with so many of these responses...

Having to explain that even with my horrid cough "you" are far more risk to me than I to you.

Being anywhere public where attendant silence is expected and exploding with my gag inducing cough.

The piteous looks I garner when I cough and cough and cough...

On the humourous side; exploding out of the library, coughing, eyes streaming, nose running, and insult to injury; farting my way to the parking lot....

TTT

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