Why is it that so much of our society doesn’t take asthma seriously?
I am so worn out by flippant comments and actions from everyone: medics, friends, family and even others with asthma about the condition.
People are amazed that you can spend a week in hospital with ‘just asthma’! They think that you take a suck on a blue inhaler and your good to go..!
More scarily, there is little understanding it seems, even amongst medics who, whilst doing a good job in difficult circumstances just don’t ‘get’ asthma.
This week whilst in hospital (3 days treatment on a trolly) and waiting for a respiratory bed to become available a doc came to me and said ‘ hope you don’t mind we have given your bed to that old lady, as you only have asthma’… needless to say I didn’t make a fuss, just politely discharged myself and went home. Still struggling to breathe now..🤷♂️
The problem is that this kind of attitude seems so ingrained within society that I don’t see a way forward. It’s not that I mind giving my bed to an old lady, it’s just the flippant asthma comment once again.
Sorry for a bit of a rant but just wanted to know if others feel the same.. like asthma is a second class condition that only matters to those suffering it and a few interested researchers!
Take care - thanks for reading
Pipsqueak🙂
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Pipsqueak77
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Good morning Pipsqueak77. Yes it's disgusting the way the health service is struggling for beds and treating patients. And yes your right about the attitude of people towards people with Asthma. I also have C.K.D and its the same attitude towards that. The worst is when they say I hope you get better soon. I am struggling every morning with my Asthma and copd. Really affects my breathing with this cough . Hope you can get some help from somewhere else. Brian
I've had people be quite hostile when I've left a room after someone sprayed an asthma trigger and set me off. They expect me to just somehow power through and hold my nose and stop being so sensitive.
I always thought people with strong perfume and smokers in public were slightly annoying but since I developed asthma it's deeply upsetting that these behaviours mean I often can't go places in public. I've been charged for taxis I couldn't get into because the driver clearly just stubbed out a cigarette. I've had to leave a family wedding very early because half the women there went to top up their perfume. I'd taken six puffs of my blue inhaler before I realised it wasn't going to help if I remained in the environment. The bride and groom were annoyed I was leaving and our relationship is now strained because I had to look after my health!
There is absolute contempt for this stuff and it really haunts me.
Wow, that really sounds horrible. So sorry you went through that. I had a similar experience in a taxi with a driver covered in aftershave and speeding, it was very stressful! and had to leave a cinema / move seats last week due to someone's spray setting me off. I've even had a friend years ago spray deoderant at me as a prank. I totally lost it at him! I think a lot of this comes from ignorance and a lack of understanding. So we need more information out there but at the same time, there will always be inconsiderate and horrible people to avoid.... Fortunately, most of my friends and family are understanding and take extra measure before I visit, such as hoovering and removing room sprays (those things are horrible!). I've had ignorance from one family member's partner, but I've just cut ties with them. Sorry to say, but that bride and groom sound self-centered. Surround yourself with kind people who are understanding. I hope you manage to find more people like that and request changes in the workplace.
So many people view it as a trivial condition that is self-inflicted anyway.
My favourite is being told that I 'just need to exercise more and get fit' to get rid of my exercise-induced asthma. People are so wedded to the idea of breathlessness = lack of fitness that they can't accept it's not due to laziness!
My second favourite is being told that I 'can't' have a reaction to anything that is available for sale because 'people wouldn't be allowed to sell them if they weren't safe to use'. Try to explain that pretty much anything can be an asthma trigger for someone, so it would be impossible to rid the world of every trigger, and I'm just met with blank looks.
I've also had people say to me "Oh, you obviously spent your childhood indoors in super-clean environments - that's why you've got asthma. I had a healthy outdoor lifestyle as a child, and I've never had any breathing problems." (I spent all my holidays on a friend's family farm, covered in muck of all kinds, and when we were hungry, we used to sneak into the cattle feed shed and grab a handful of the molasses feed, so I'm pretty sure an over-hygienic childhood is not the issue!)
I now reply to ignorant people - including doctors and respiratory nurses - since a GP replied to my request for a same day appointment for stethoscope listen to check for infection "why, you've only got asthma " are you aware people die every day from asthma everyday? I did have an infection on that occasion (and dozens of previous occasions along with several pneumonia). Grrrrrr It's odd that most people 'get' hay-fever though.
I was taken to A&E in an ambulance at about 1am on Saturday. After taking blood and having an ecg, I was told a doctor would see me asap. Nearly 5 hours later I still hadn't been seen and was struggling. I asked for a nebuliser only to be told I couldnt have one until I saw a doctor. However the wait for a doctor was another 6 hours! 11 hours to be treated for an asthma is dangerous! I said I'd be better going home to use my nebiliser. The nurse said, " yes that would be a better option!" She also commented that A&E was busy because of them dealing with immigrants and druggies!
Yes. It's hit and miss whether or not you see a clinician who has more than a cursory knowledge of asthma. It's very frightening. What can we do about it?
yes my main symptom is a cough. Rarely wheeze and when I do it’s when I’m not actually that bad🤣Even other people who may have very mild asthma think you’re being dramatic if you’re having a reaction to something that doesn’t bother them . We’re all different. My family know not to spray anything around me…quite funny in a holiday cottage earlier in the year to watch all my adult children wandering in the garden to spray deodorant 🤣
I'm the same - wheezing hardly ever appears, and when it does, my asthma's not usually bad enough to bother me.
I don't understand why people with asthma don't 'get' it though. I'm fortunate that mine is well under control (at the moment), but I'd never dream of ignoring someone else's issues with a trigger, just because it doesn't bother me.
I guess it's easy to get over-focussed on what bothers us though, and forget about the impact on other people. I came across one woman who was planning on issuing all her wedding guests with packs of soap and shampoo and instructing them to only use these products in the week leading up to the wedding so that she could ensure no one turned up using a product that might be a trigger for her. The thought that some of her guests might have a reaction to products that were 'safe' for her obviously hadn't entered her head!!!
She said she gets reactions even to some 'unscented' products like soap and shampoo, so wanted to make sure everyone was using products she knew were not triggers for her.
I get that it's difficult, but we do have to accept that we live in a world with other people in it, who may have health conditions which are impacted by stuff we do, just as we are impacted by stuff they do. One of my biggest triggers is alcohol-based hand sanitiser, so you can imagine how much fun I had during Covid, and good luck with getting people to stop using that anywhere near me!
I know what you mean but your average Joe blogs does not realise how awful it is. If they were going blue in the face because of a asthma attack they would understand .Don’t waste your time worrying and get cross about it as frustrating as it is .Unless you suffer a condition you will never understand .Zhope your feeling bette .🤗
I have noticed that I used to have really good treatment in A&E until about a year before the pandemic. Just before the pandemic I was taken to A&E by ambulance, having been given a nebuliser in the ambulance. They asked me on arrival at the hospital do I want a chair or a bed. I stupidly opted for a chair. Was taken into a room with lots of other patients, no assessment from a nurse. My asthma was deteriorating due to a chest infection (possibly covid). I have my own nebuliser which I had to use as there was no staff in sight. I have it under the agreement with my medical team. I was eventually seen and admitted. I was unable to speak to ask what the difference was between going in by chair or trolley.
Some medical staff are obviously not well trained in asthma, it is very concerning. Something urgently needs to be done to address this.
I am happy to educate anyone who asks what my medical alert dog helps me with. I then explain how life threatening an asthma attack can be (I can react very quickly to triggers and my dog alerts me before I'm aware anything is wrong). Some people have had relatives who have been severely impacted by an asthma attack, others are completely unaware how dangerous they can be.
There has been a lot of media about heart attacks and education for the general public with heart charities. As well as celebrities talking about it. With asthma it's generally sports people who have asthma who are well controlled that we learn about, nothing is ever said about how dangerous an asthma attack can be or how ventolin should be used with a spacer.
Sorry to hear that, it's hard when we are symptomatic most of the time. I hope things improve for you.
I'm now on holiday (in the UK), so sorry for the late response. Apparently I have mucous plugging which became apparent after doing Spirometry a few weeks ago. I felt so much better afterwards in that respect. I have to do mucous clearing twice a day using an Acapella device. I had a positive Mannitol challenge test last Monday and it really took it out of me. They are trying to work out what phenotype of severe asthma I have.
No one can see if you feel like you are drowning. Or are short of breath etc.
Assumptions of medical professionals who seem to think if you are having an asthma attack you must be anxious. To be honest I don't get anxious unless I know it's getting dangerously bad. I was even cracking jokes during the beginning of the Mannitol challenge test. I'm more anxious about how much medical professionals really know about asthma.
I have many many thoughts on this! I'm actually working on a chapter in a book on this exact topic (talking to loved ones about how having a chronic condition affects us) so I'm curious to hear from you and anyone else reading this what you think about my brainstorming so far
I think six of the big reasons people don't understand what it's like to live with a serious chronic condition are they:
1) have only ever experienced temporary illnesses like colds or gastro bugs and not what it's like to be severely ill frequently and unpredictably; to be dependent on medication to live; to miss many activities because of it, and so on. Millions of people have mild asthma and allergies, too, and so they think that's what asthma feels and looks like. They don't realize 8-10% of asthmatics have severe asthma that doesn't respond to medication and results in frequent hospitalizations.
This is a great area for more public education and advocacy from groups like Asthma + Lung UK and the Allergy and Asthma Foundation in the US.
2) don't understand how we can be sick if we look "fine". Again, I think this comes from the limited experience people have of being sick which is that if you have a cold or flu you are pale and sneezy with pink eyes.
I am working on a campaign called something like #notfineinside as a counterpoint to this way of thinking since 96% of disabilities are invisible and it's actually much more alarming to not look fine inside. For example, for many of us with severe asthma have lungs that are scarred and permanently damaged from a lifetime of exacerbations.
3) get ideas from pop culture about what a particular illness looks like. I think this is particularly damaging with asthma when you have movies like Hitch or Goonies or It that show asthma is mostly in someone's head and that they can stop using their inhaler when they overcome a certain fear.
4) assume a person can get healthy if they are sick. Even my friends and family who are supportive and understand how bad my asthma is often can't grasp that there are no medications that can help me beyond what I'm already on (Symbicort, Spiriva, Xolair etc.)
I think most able-bodied people who've been lucky enough to be healthy their whole lives assume if they go to the doctor or hospital there's a quick fix, medicine, surgery etc. that can help them if they need it. They don't realize how many hundreds of millions of people have diseases that lack sufficient treatments.
5) assume good health is our baseline. So many health and wellness magazines and blogs are predicated on the idea that if we just eat the right things, take the right vitamins, get enough sleep and exercise and so on, we will naturally come back to some sort of baseline of good health.
But that's just not how bodies work. More than 1 billion people worldwide have a chronic condition and while some of these can indeed be addressed with a healthy diet and exercise, hundreds of millions are genetic (Huntington's, Sickle Cell), autoimmune (lupus, MS), or infectious (malaria HIV/AIDS) which just goes to show how common it is for bodies to go on the fritz. Yet there is this pervasive and persistent idea that if we just do the right things we can "get back on track" to some natural state of health.
6) have deep-seated defense mechanisms around illness that include denial, suppression, projection, and defensiveness. A lot of people are afraid of anything that even remotely comes close to making them think about their own mortality so they will unconsciously avoid talking about illness and project their own fears of it onto others.
I also think in countries like the UK and USA where the protestant work ethic is so intensely tied up in our cultural heritage, being sick is seen as a weakness and an obstacle to creating our identity through hard and constant work. I think it's interesting that the word 'malingering' exists when it comes to work but there is no other word for how illness affects us in other areas of our life, e.g. in relationships.
I've been reflecting on how to overcome those six things and experimenting to see what works in my own life. I have found focusing on facts and figures, using metaphors, and finding common ground to be helpful.
In my case, facts and figures is something like:
-more than 100,000 people die globally from asthma attacks each year
-most people wake up with morning cortisol of 60-120 and mine is 5 which is why I will die if I don't take hydrocortisone daily (this is to talk about adrenal insufficiency which I developed from taking so much prednisone to treat my asthma)
Metaphors are things like:
-having constant flares feels like I’m living in a house in a flood plain that keeps flooding--the house gets more and more devastated over time and the wood is moldy and falling apart but I'm stuck living there and can't move anywhere else
-my autoimmune system attacking itself is like being filled with millions of miniature Don Quijotes who think they are bravely attacking monsters but instead they are just windmills (in my case, a piece of cat hair) and it's destroying my body in the process
Ways to find common ground:
-talking about the experience of giving birth and being in the hospital; for a lot of mothers I know that's the only time they've been hospitalized and I can usually draw on that to explain how scary it is to be hospitalized unexpectedly with an asthma attack or adrenal crisis and then to have to go right back to caring for your child even when you're still only at 20%
-other experiences of invisible suffering like losing a loved one or going through a divorce
I think the 'denial' aspect is a key point especially behind assumptions that asthma is because of how you behave. If I have asthma because of my lifestyle choices, then other people can avoid getting it if they make different choices.
It's the same reasoning behind the way in which people often attack the victims of assault or abuse or those who are injured in accidents. Again, if what happened to you is 'your fault', then others can avoid having the same experience by making different choices.
Realising that bad stuff happens to people who did nothing to cause it and that they could have done nothing to prevent it is scary, because it means those bad things could happen to me too. And lots of people don't want to face up to that.
Wow… what an amazing and in depth take hilary39! I hope your book is a great success!😊👍
I agree with many of your observations particularly about looking ‘fine’ when you are actually quite poorly and just not being taken seriously as asthma is a ‘weaklings’ condition and too easily dismissed.
There is definitely a feeling that asthma is almost self inflicted and that an individual is not strong enough to deal with it?
Stereotypes and stigma exist around asthma on all levels - I just wish this wasn’t the case and wish there was some way to educate society.
Agreed. In my research, I am talking to parents with a wide range of chronic conditions from ALS to rheumatoid arthritis to lupus to myasthenia gravis and what has been fascinating and unexpected to me is how similar everyone's lived experience is even if the physical manifestation of their condition is quite different.
One of the most painful things for people across the board is how often their friends and family can't understand, won't talk about, or minimize their condition. It seems to be a universality that even for people with cancer, friends and family members will suggest carrot juice or vitamins or an article they saw and then be upset it doesn't fix what's going on.
And I should have added above that I realize my post was just about friends and family. I could write a much longer one on my thoughts on medical professionals (I have a chapter on that, too )
I suspect that's also part of why some doctors blame the patient. They would prefer to think of themselves as someone who could never be in that position.
In that case I think it's also linked to them not wanting to think they can't fix the patient. If it can be blamed on the patient doing something wrong or not listening/doing what they're told (even if that was impossible or didn't actually help), then the doctor hasn't 'failed', and they don't have to try and wrestle with a problem without easy solutions.
That’s a great summing up and some wonderful insights. Could I just mention, tho, that both Type 2 diabetes and heart disease can be caused by genetic conditions, and while most Type 2 diabetes is diagnosed in people who are overweight, not all of it is - the usual figure is 80-90% are overweight or obese, but that leaves 10-20% who aren’t, whose diabetes wasn’t caused by and can’t be cured by changing their diet. It’s another condition where many assumptions are made, and people are left feeling it’s their own fault.
Great point and thank you for making it. I deleted that above. I am very sensitive to this issue since so many people with adrenal insufficiency develop type 2 diabetes. I think I was thinking globally about studies like the new shake/soup one in the UK that shows how much a change in diet can help but I think I read, exactly to your point, that that's only true for 2/3 of people with type 2 diabetes.
It is so frustrating to be blamed for things that are beyond our control. I myself have gained about 10 kg from being on steroids and I eat SO healthily and do intermittent fasting etc. and my doctors always say I shouldn't be gaining weight since the steroids are a replacement dose of a missing hormone. I always feel so frustrated and want them to spend just 30 minutes on my Facebook group for the 7,000+ people with adrenal insufficiency who eat so well and are frustrated by their weight gain.
Great thoughts Hilary. Just to add to the weight issue, I too have put on weight with steroids and also not being able to be as active as I’d like to be/used to be. I think there is definitely a stigma around this…lose weight and your asthma will improve! Yea right, if only that was true. I wasn’t overweight at all when I first started with asthma. I’ve also lost 2 stone this last year and it hasn’t improved anything. Life’s a bummer but we plod on. Thank god there’s people on here who get it. Good look with your writing x
I have experienced lots of the same sorts of situations as above, including a nurse on a train (she told me afterwards) who sprayed hairspray opposite me, and set me off. She was blythly unware of the trouble she caused, until I pointed it out and then she apologised. (the train was packed so couldnt move). However I wanted to end the thread on a good note. There are good people out there. I was in a grocery store in Bermuda, and I had left my Ventolin behind. And something set me off, I had a massive attack and couldn't talk, everyone was panicking and trying to hit me on the back. A young teenage bermudian boy rescued me, he ran off and came back with his spare ventolin inhaler. Oh my goodness I was so grateful, that he immediately recognised what was going on. A real Knight in shining armour. There are so few of them around. Mostly its only those who have asthma or their familys who understand. I had to teach my son when he was 3 years old what to do in an emergency, ie call 999 and open the door and find my inhaler. He was a star. But it made both my kids very panicky about my asthma.
my favourite is being told by a doc while on the monitoring bay (one step down from HDU) that I’m panicking and that panic and anxiety is common in young women, if I just take a few deep breathes I will be fine. Yeah the deep seated infection I had which was the start of pneumonia had nothing to do with it. Also being told that I’m maintaining fine so what’s the problem - heart rate of 150, blood pressure of 160/120 and resp rate of 29 but oxygen was 99%, so I was maintaining fine.
Sadly especially for women we are dismissed as panicky and hysterical, we have to be strong advocates for ourselves to be taken seriously. Asthma generally is still seen as a childhood disease that you grow out of and that as long as you are maintaining your oxygen then ther isn’t a problem.
At my recent visit to the asthma nurse she admitted she didn’t really sympathise and empathise with her patients until she had pneumonia from Covid last year, now she says she really understands and really pushes for her patients even when stats are okay because stats don’t give the whole story. She went to hospital with good stats and they didn’t start to deteriorate for nearly 15 hours at with point she was very sick. She understands now that people with lung conditions can compensate for months and so she goes of what her patient is telling her and not just stats. Unfortunately until someone has experienced it they don’t get it.
Agree with u my mum used to say if u have a broken arm or leg people can see it but asthma can't be seen or believed by those who have never had it.Ive had the same off people but learned to ignore.Sometimes I would say if I put a pillow over your mouth and nose and held it there until u were fighting for breath that's how I feel.But honestly do u need these people in your life NO
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