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Do you ever feel that there is a stigma... - Living with Asthma
Do you ever feel that there is a stigma associated with asthma?
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CalvinHU
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16 Replies
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My perspective is of growing up as a non-asthmatic. I can recall with children I knew who had asthma the idea that it was emotional, and that all they needed to do was calm down.
After receiving my first diagnosis of asthma as an adult, I was bewildered because of early misconceptions about this diseease. I felt myself to be sound emotionally and mentally, and yet I was experiencing asthma. I realized that the stress of asthma reinforces the impression that it is simply emotional for those who can't know what it's like.
Really, anyone denied adequate oxygen would react with strong emotion. Understanding the confusion non-sufferers can have makes it easy to forgive. It also allows me to be completely comfortable telling others I have asthma. I don't have to let any misconceptions they may entertain affect me.
The layperson - ‘It’s not that serious’
The layperson who knows you - ‘don’t do x because we don’t want you to die’
Friends/Collegues - ‘well you don’t sound bad, why can’t you do x’
It’s one extreme or the other, either it’s nothing or it’s going to kill you. I constantly feel judged as I can be fine one day and needing hospital the next.
People don’t trust you to manage your own condition either - you’re either lazy or doing too much. They don’t understand everyday is different and some days you sound bad but feel ok and others you feel bad but sound ok. Do as much as you can, when you can but rest if you need too.
I’ve been accused of attention seeking because I use a spacer and I ‘don’t need that’. Also ‘some people are dying from cancer, stop making a fuss’. I’ve also been suspended from uni (when well!) because I have asthma and had been in hospital. It’s very frustrating!
Also a stigma from doctors - ‘calm down, you’re having a panic attack’ - I’m not panicking, I’m asthmatic - well your PF is fine (330 expected average is 420) - no I’m at 50% my best is 630 🙄. Also ‘well you’re not that wheezy so you’re fine’ (esp for CVA!).
A lot of education is needed across the board I think, doctors, friends, gen pop! Argh - I could rant all day about this 😤😅
I don’t feel that way. Sure, there are jokes in movies about asthmatic kids and such, but I think it’s such a common thing and it’s widely accepted as a legitimate illness. Many people have varying degrees of asthma, I think that people who have mild asthma might make it seem to others that all asthma is that easily controlled or maybe only exacerbated by exercise— because more people than not have mild asthma, but I still feel like asthma is something that’s widely discussed and legitimized. I’ve had people poke fun at me for my asthma but nobody has ever delegitimized it or said anything negative about it in a serious/demeaning way
campisaAsthma Captain
I am not sure about a stigma, but since I have worked with asthma patients for about
five years. I find that asthma sufferers and their caregivers feel like an asthma sufferer can't do everything that a normal person can do, that they are handicapped in some way.
Definitely, not so much at school or college but I have had issues at work. My old boss was really horrible to me after I had one day off to go to hospital after a bad attack. She thought it was basically a made up illness and i was pathetic for not getting it under control all the time. So I went and found a new job elsewhere..that pays more and is much more enjoyable
Work can definitely be an issue - I've had good bosses and bad ones! I have a feeling though that a bad boss will always be a bad boss, and they probably don't give a monkey's about anything that affects them, be it asthma or otherwise.
That’s so true!
I do believe that people that do not have asthma don't understand how we feel. They do not understand what it is like not to be able to get your breath when you come in contact with your triggers. I worked in a very small office and just could not take it when people would come in with perfume on or when the cleaning people would clean with something scented. I would have to go outside and do my inhaler and just wait until the scent was out of the office. I finally gave my job up. My health was more important.
MinushabensAsthma Captain
I think it's a lot better understood now that it once was. When I was at school, I was probably one of the only children in the whole school who was diagnosed (I don't know if that's because it was less prevalent or just diagnosed less) with asthma, and my inability to join in games, run, etc. was something other children noticed and commented on.
Nowadays, working in schools (UK), every class has 3 or 4 orange inhaler bags hanging up & they have to be taken to every PE lesson or other physical activity (even just walking down the road).
People still don't understand it often, if they don't have experience of it, and I do occasionally hit problems with people assuming I can do things that I can't. Overall, though, I don't think it's too bad where I am.
I agree! I think asthma is better understood today, largely due to the fact we know more about asthma- it's not a one size fits all!
I just visited someone I had hoped would be my new PCP. She took one look at my record and announced rhatvim having panic attacks. This was settled years ago it’s not asthma attacks. Dozens of ER doctors, PCPs, allergists, hospitalists etc. would not ALL mistake panic attacks for asthma. Solumedrol doesn’t improve panic attacks. Duoneb and albuterol should make itvworse, not better.
She may be a very fine doctor in some ways, but she came in the room berating me for a mistake the insurance company made. Life is too short to put up with that.
I’m going to have to move to a larger city with a larger pool of doctors to choose from.
FearNot• in reply to
Sorry you're going through this.
"I can't hear any wheeze, i't not asthma, it's all in your head."
"It's just asthma, you'll be fine. Nobody dies from asthma!"
"It's OK to smoke here, I've already opened the window".
"My friend has asthma and he doesn't need any inhalers. Why are wasting money on them?"
(during training) "Why are you so slow? Move faster!!!!", "Why do you need to warm up for so long? You're a time waster".
Yes, think I’ve heard all of these. Also
‘Well I’ve got asthma and all I need a a blue pump. You don’t need anything else. Just work through it and it’ll go away.’
‘Stop coughing and your asthma will calm down’ (from a doctor)
‘You’re very unfit’ (when attack triggered by exercise)
🙄
My asthma is generally well controlled and I can live symptoms-free, but I still suffer from Exercise-induced bronchospasm. I've decided to train despite it and I exercise like crazy. I've received many horrible comments from people I train with. "Why are you so breathless?", "Faster!!!!!", "You've been doing this for 5 years and this guy came to our club 5 months ago and he is better than you!"
I personally do not feel I have been stigmatized but from reading posts, I can tell others have been.
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