Am I the only one that gets irked when complete strangers stare at me and my oxygen supply when out on my buggy and then come over and say 'so what's wrong with you then'. What makes these people think that I want to discuss my medical history with them. I don't mind children asking, as it can be quite amusing to see the horror on their parents faces. But adults. If nothing else it's just rude.
Am I being to sensitive? I'd be interested to hear from others in the same situation.
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Baldie
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I don't have a buggy but when I go out I go out in a wheelchair (I don't go out without anyone with me) people can be so rude because they think they can be and that is why they ask those rude questions, they wouldn't do it to an able bodied person.
My daughter had a great answer to someone who asked her what was the matter with me - I was in my chair - she told them "Oh don't worry she is just bloody idle and I push her around because I want to inherit!" Just think of some snappy come backs and you will be fine!
Mine is almost the opposite. I look completely healthy and nobody would know I have COPD. Except if I start to struggle for breath, perhaps with stairs. I can manage one flight, but two is pushing it. So when I get really breathless and struggle they ask what's wrong and I explain. They often say "it can't be that bad as you seem ok normally"
I so so understand this. I look really well, I have a good colour, pink cheeks, sparkly eyes and you would not know I was ill. Luckily colleagues at work know that I can't walk up the stairs very well etc and they make exceptions but visiting other offices/people or even swimming people often ask me what is wrong or if I am asthmatic. I get the old 'but you look so well' line all the time. I am as my mum tells me 'a healthy looking ill person'. I suppose long may it last...
Marie x
"I can't understand it, I know someone with copd and they manage perfectly ok".
Be comfortable in your own skin then any problems are theirs, even the cases that talk past me as if becoming invisible, the how has he been that I would not be able to answer as the brain is following the lungs decline can be given a cheery smile with no frustration to carry around holding me back.
Then there's the concerned half stranger who comes up gently puts their hand on your sleeve and in a very quite voice asks 'and how are you' I know they mean well but I don't tell anyone how I really feel. Then I don't dwell on it.
I Have a buggy and have never had comment apart from asking me if I have arthritis. Nobody has been offensive. If they were, I would say "not your problem - it is mine and it bores me" But where I live there are plenty of buggies. i make friends. Oxygen users - if I needed oxygen, which I might do one day, I would say just go away!!
Im not sure what I will say .... not there yet but will be .... from where I am now the temptation would be
'I smoked .... this is what happens...'
Bolilly
I haven't made it outside since before Xmas so I'm looking forward to getting out there again.
I don't recall a single incident that offended me. I was stopped in the sun one day, eyes closed big smile breathing a bit laboured praps and a guy asked if I was ok, did I need help. Getting to know people I never noticed before I sold the car, just a smile and a hi or maybe nice day again. A young guy with a skateboard under his arm called thats a helluva set o wheels you got under you man, you can't blame me for laughing.
I'd love to be able to get out there tomorrow but matron says to wait a while longer but it won't be long..
Like you I like the odd jokey comment or the smile from some I've noticed looking. I also am looking forward to getting out more but in this weather it's not easy the wind and the cold take away what little breath I have.
Agree, having a buggy can make friends. People say where are your L plates. I watch children - they are oblivious of danger. Texters are a menace - they have their head down and walk into the buggy. People can be kind. I had my handbag open, looking for my purse. I was offered help - are you alright. Yes, once I have found my purse.
Have you noticed that people just walk in front of you in shops almost daring you to run them over?
It seems like that, I do take a lot of care with people in front of me. Very unpredictable. They suddenly stop or wander across the pavement. Dogs and children!!!! I would hate to harm anyone like us all.
the trouble with ipf is that nobody knows what it is, so if they ask and you say ipf, it cant possibly be a short conversation, its a long convoluted explanation that they dont want to hear anyway, richard usually says , me lungs are knackered, short n sweet ( not so sweet really )
I see both sides of the coin here and maybe offer a different perspective. We all know that often lung diseases are not called the armchair illness for nothing because when you are sat down, often you look like there is nothing wrong (not including if you are wearing a canula!). Also, without any physical aid, including a scooter, wheelchair or oxygen you will look perfectly 'normal' just maybe walking more slowly etc so to everyone else they will not know there is anything wrong with you.
Before dad had to use a wheelchair he walked with the aid of oxygen and never once had any unwelcome comments. Then when he did use the wheelchair, often with me pushing it, if someone did walk in his way, sometimes he would ignore it and other times he would simply say beep beep! When they'd look he would say, women drivers and nod in my direction and laugh. We all would. Dad was so grateful that he was able to get out and about he never once let it get to him. The only thing dad would stress about was the strain or stress he thought he was causing to me and mam.
Now the other perspective I would like to point out is, as you said you could be in your scooter and someone may walk in front of you. Well that someone could be someone with a lung condition (or any other for that matter) who may not have a visible showing of a condition and as hard as it is walking for them, having to divert out of the way of someone on a scooter could be difficult for them. My mother has angina and you would not know by looking at her. She looks perfectly fine. If she is lucky enough to go out in this cold weather then I would not want my mother to walk any further than necessary, even to walk out of the way of someone with a scooter.
As for people staring, we are curious and nosey by nature and more often than not ignorant of understanding peoples conditions. Sometimes dad was approached when he was wearing his canula and he chatted away to them (breath permitting) especially children who would look. In a restaurant once, a little boy was staring at dad and dad was smiling back. Then after a while, his mum said that her father used the same and the boy said to dad he was like his grandad. It melted dad big time.
I only speak from personal experience, as a daughter of a wonderful man who had ipf.
Because so many trees have been cut down in the amazon rain forest the world has less oxygen. And I am sensitive to that. Could say I suffer from low altitiude sickness. They say one day everyone will be like me if the trees keep gettting cut down.
Seriously I don't mind if someone asks me what is wrong with me. What I don't like is people that should no better starting at me. Or what happened once a short while ago. A guy looked at my wife, ignoring me, and said, what's the matter with him'. Him had a growl at him and he won't do that again. lol.
I have a dreadful cough and I hate when people say while their smirking "you'd want to give up the cigs before they give you up" I stopped smoking 3 years ago when I was diagnosed.
I stopped smoking over 30 years ago but am still asked whenever I see a doctor 'are you still not smoking' as I would start again. I plainly must look mad.
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