Does anyone else find it really irritating when your lovely family and friends just showing concern ask if your better after a admission or attack? I just don’t know how to respond, when of course you feel better than you did but life is still a struggle, not sleeping, regular attacks.
I just end up snapping peoples heads off when really they are just being nice!
YES! Then I feel horrible about being annoyed! They’re only trying to care and be nice, but it’s frustrating when people don’t understand that the battle is never over, it just gets easier and worse in waves.
I spent last week in hospital after a viral exacerbation of my brittle asthma and the GP has signed me off for this week (at least) to give me a chance to recover before going back to work. I met a colleague while I was at the local shop who looked surprised that since I was no longer in hospital, I wasn’t back at work. It’s a no-win situation sometimes!
Yeah, I remember the one and only time I was admitted being asked if ‘I was OK today’ (Just after admission), and me saying I wouldn’t be there if I was OK. But the person was just being friendly. Still seemed very incongruous.
How would you feel about being asked “How are you feeling” or “How are you feeling now?” which is what people who know me usually ask if I’m unwell, including the one time I ended up in hospital and another occasion when I nearly ended up there.
I’m just having a moan, they don’t mean it, just every time I have a admission and come home people just think because your out of hospital your all better! They are just showing concern and I’m just overly sensitive!
I can understand in a way - particularly if they think that just because you’re out of hospital you’re completely well. That’s not something I’ve experienced, though to be fair I’ve never been admitted just for an asthma attack, it was pneumonia aggravated asthma that landed in hospital. When I came out after five days in apparently I still looked as white as a sheet - so it was probably blatantly obvious that I wasn’t right.
That said, I used to get quite irritated when people were too protective and didn’t want me to do things because they were scared of what might happen if I did them. I do know my condition and, on the whole, do know my limits.
I spoke to my mum about this conversation tonight - and she was quite shocked that I have a tendency to get annoyed by the “feeling better?” question. I totally understand that people are just being nice - or don’t know what else to say - and I’m overly sensitive to it.
She asked what I would prefer people to ask. Perhaps “how are you feeling?”, or just say something like “it’s great to see you!”.
It’s similar to trying to talk to someone who has returned to work after a bereavement - you want to say something positive and supportive but at the same time you know the person still isn’t “over it” and glossing over the fact can be insensitive.
It’s difficult to know what to say.
I also have experienced the “how are you feeling?” but the person doesn’t REALLY want to know the answer, because they know they can’t help, or don’t know how to respond to the answer.
Yes! I know people mean well, but I always feel awkward, especially as I know they just want me to say yes, and not actually go into detail, and truthfully say how I’m doing. They definitely don’t understand that everyday can be a struggle and it’s then when you need support!
I think the frustration I get from this question is cause I’m only asked after the event. When it’s building no one seems to care, when I’m admitted no-one visits and after it’s happen, as you say, you’re expected to be completely fine.
Plus pred-head doesn’t help with the irritation/anger 😅 (then I feel horrid and ungrateful). It’s strange cause some people I don’t mind this question from and can laugh and joke about it, others I just want to tell them to F off (guess it depends on if I like them or not 😂). But it’s definitely irritating if you have to keep answering it for different people!
I totally agree! I have friends who I don’t mind joking about it, and people who I hate even asking me about it! Maybe it’s a pred thing...?
Yes don’t think the ‘pred-head’ helps! I feel awful because I do have amazing family and friends when it all comes to a head and I’m admitted. But it’s the lead up and after when I’m still struggling & been up most of the night when someone asks ‘are you better now?’ And I just feel like shouting no! I’m 27 years old and I’m restricted in what I do every day!
Sorry for the incredibly moany post, I know I’m being majorly oversensitive, just having a bad day! It’s lovely to know your not alone speaking to people on here! X
Everyone needs a moan/gripe to people who understand sometimes! I’ve done it often enough on here 😅 - just blame the pred and all is well 😂
I completely get what you mean about finding others like you... I didn’t find this place til I had a semblance of ‘order’ and knowledge about my asthma after I spiralled into severe, and wish I had found it earlier so I didn’t have to learn through experience! I went from EIA aged 13 to my first official attack aged 19, flared at 21 then started the spiralled to severe aged 23... found this place aged 25 (I think) by which time I had been through most things and coped with it alone! Now I’m almost 27 and this is my first point of call for any advice, support or information!
Moan away if you need to!
I know what you mean - it's difficult to convey that being back doesn't mean everything is ok. I don't mind it from some people but dislike the assumptions. Current colleagues are lovely but I think in a previous job and also with family people don't always understand that I can't do things like other people even in between admissions/flares! Like Maggie I also get the overprotectiveness from family ans the lack of understanding that I still have to live my life. Then I get a colleague at my previous job who when I was explaining that some types of exercise tend to be hard for me said 'even if you have asthma your lungs are the same as anyone else's so you should be fine.' Err..no. I know what I can do and no they're not the same as anyone else's actually even between attacks! I know people run marathons ans have asthma but their asthma is probably better controlled than mine! I really don't like being told by others what I feel like or can do.
Does anyone else get the 'you look well?' I have had this from medical people and it annoys and worries me. Last time it was from a nurse specialist who I was seeing hoping to explain things hadn't been good! And she kept saying I looked better than 2 years ago. Only problem is I feel like my asthma has got worse since then so that made me feel she wouldn't listen. I probably do 'look' better as I was on long term pred then and now am not, but only because it doesn't really work for me! My lungs are not better and that comment is probably meant to be encouraging but in context just isn't. I needed her to understand things were not great and find it hard enough to say that in appointments.
I get that quite a lot, then it’s difficult/awkward if you don’t feel well to say so! Because I’m just starting to gain a semblance of control after 3-4 years of no control they think I’m a lot better and cured! I still get daily symptoms but they’re no where near as bad a they were so I look better but I’m still not well!
I’ve also heard it from people mid-attack cause I’m a ‘happy’ asthmatic and tend to laugh in a&e (unless I’m completely out of it and nearing intubation). This facade is what gets me through life as a severe asthmatic, however if I get a doc who doesn’t understand this (or that it’s a reaction I get from the drugs cause I don’t want to cry) they don’t think I’m that bad... luckily I’m a ‘normal’ asthmatic PF/wheeze wise so they think I’m fine til they talk to me/listen to my chest 😅😒.
I find it hard enough to say I'm not well without being told I am! Always have been very 'British' and I suspect it might not help me either in attacks looking 'happy' given I am not a normal asthmatic. On the flip side I have been told I look terrible by medical staff (usually later when they phrase it as 'well you look better than earlier!) which is confusing but at least validates things a bit.
After a lot of being told I'm fine and just going to hospital for attention by consultants who see me when I'm not too bad in clinic (not current lot), I find it incredibly hard to say I'm not fine and reinforcing that 'I don't look bad' or 'I look well'' just isn't useful. I don't yet trust myself enough to be that insistent a lot of the time in this situation, though I am learning.
I’ve certainly had someone state during a group discussion on asthma and aerobic exercise (the debate had actually originally centred around cross country running) that asthma needn’t hold people back from doing sports that in volved a lot of running as her son was asthmatic and he could do it. On that occasion I was annoyed enough to get quite sharp. My response went along the lines of that might well be fine for her son but if she got me to do that she would end up calling an ambulance. It is something that is just too often not understood: just because one asthma sufferer can do something doesn’t mean we all can.
I had a PE teacher like that. She had mild asthma which I think had allergic triggers and she was convinced exercise had mainly cured her. I also had mild asthma at school, and freely admit I might have used it a bit as I wasn't a fan of PE other than swimming and summer athletics. However, I was genuinely triggered then by cold air and exercise, and winter PE outside could be a problem - cross-country especially. She was adamant that because *she* was fine with that, anyone could do it.
I do find it annoying when people use asthmatic elite athletes as 'examples' - 'if they can do it you're just making excuses', like the person you mention. I once saw a respiratory physio who felt that the apparent unusually high rate of asthma among athletes was not in fact asthma in a lot of cases, but a result of some of the training they did. I was glad to hear that as I do get extremely fed up with the implication that I'm just not trying hard enough, when at times just getting out of bed can make me short of breath.
I also dislike the 'asthma doesn't have to hold you back/don't let it control you' line. I understand that it can be helpful if you are new to it to know that it can usually be controlled and there are steps you can take to get there - I have seen people thinking they should just put up with symptoms when they probably could be controlled and shouldn't have to. However, it's not necessarily a 'choice' not to 'let it hold you back' - I did NOT choose to have asthma hold me back the way it has done in recent years, and it's massively unhelpful when that's applied as a one size fits all.
Interestingly, this debate was started by a PE teacher.
I never used my inhalers to get out of PE:-). I actually really enjoyed participating in sports and found it extremely frustrating that asthma held me back as it did. As it happened I did ballet and gymnastics as a child, though the latter nowhere near the level others on the forum have done it to but that was partly because we’re talking 1960/70s here. But gymnastics at that more basic level was great for me as the aerobic element came in short bursts and I could cope with that. Cross country running I never did, nor did my secondary school force me to do so. There was a reason for that: within two weeks of starting there aged eleven I had a bad asthma attack brought on by playing tig in the playground, so the school found out very quickly what sustained running could do to me. I get very angry when I hear of schools that are not so sympathetic.
I remember a time when my PE teacher just ignored me struggling. I was 15/16 and only had mild EIA asthma, so I think they used to think I was being ‘dramatic’ then I took my pump outside with me for PE. This particular time we were doing the 1500m run on the field and I got about 400ms before I had to stop. After making sure that I wasn’t going to continue the run 🙄, my teacher just sent me to the opposite end of the field to sit under a tree by myself. I just took a lot of ventolin and struggled with my breathing for the rest of the day, feeling totally knackered. I think my teacher thought I was just using it as an excuse to get out of the run (nobody’s favourite activity), because I was training 4-5 times a week at national level after school, however I think I was reacting to the grass/pollen as well as the exercise (grass is a big trigger and I think they had just cut it)
Looking back with what I know now I defo should have gone to the student office and possibly hospital as it is I just dealt with it and didn’t even tell my parents.
I hate it when people compare asthmatics to elite athletes, especially as I’m coming from a high performance level! If, as and when I get better control maybe I’ll be able to participate in sport properly but currently I can’t... comparing me to those who can is very frustrating! It’s like trying to compare someone who’s lost a couple of fingers trying to open a jar to someone whose lost their whole arm! And at school I was considered ‘not ill’ cause I could do so much and was only mild so was rarely asthma-ry (using the amputation analogy because I had a whole arm yesterday, I shouldn’t make a fuss today cause my hands become useless... some people are missing their entire arm! 😠). This approach didn’t help me later when I started to spiral cause I didn’t want to make a fuss!
It’s odd isn’t it. Running “nobody’s favourite acitivity” whereas I would have have loved to be able to do that. I could do 100m (even as a sprint) but going beyond that was when the problems would start.
I was fortunate in that I had a PE teacher who was sympathetic (and I confess to being fairly disgusted that decades on when asthma is much more widespread and known about, if not always understood, there are PE teachers who are so ignorant of the realities of the condition). I think she also realised that I actually enjoyed taking part in sport. In my junior school I was often the one who no-one really wanted on their team, initially because I really couldn’t do things as I was undiagnosed, and after I was diagnosed and on medication because the idea that I wasn’t much good was too well established. When I started at a secondary school in a different area where no one knew me I really think I just wanted to make a fresh start and have a go. I suspect the PE teacher, who certainly knew I was asthmatic, recognised that and liked what she saw. Certainly she had no qualms about me stopping or pulling out of something if I was having a problem. I remember the pride I felt when, in my second year, I was put into the group for competent swimmers having gone to the school only able to swim 10 metres of doggy paddle. I lasted there just two sessions - it came to a halt when I had to be rescued having had an asthma attack in the pool. I didn’t mind being put back into the group for weaker swimmers - as far as I was concerned my achievement had come the moment I was considered good enough to have a go in the higher group.
The problem is that it really doesn’t help when sports commentators (some of whom have been sports stars) make comments along the lines of “this person is an asthmatic. Asthma needn’t prevent you from reaching the top.” I know they mean well, but I do wish they would consider carefully how some people might interpret a comment like that.
I loved swimming - the only sport I was even remotely good at. Actually enjoyed athletics too, but was pretty rubbish at most of them. I should get back into swimming really though need a pool which is not too steamy and chlorinated.
I tended to lock horns with PE teachers - it wasn't really a good relationship. I'm fully aware my teenage self wasn't easy to deal with and probably quite annoying, but I also look back and think that they didn't really do what I think schools should, which is encourage people to enjoy exercise and find something they can stick at. I get that you can't cater to everyone individually all the time, but don't make people think they're useless and should give up (or patronise them), and don't insist that team sports are the only way forward and that everyone should be able to do and enjoy the same things. I still haven't quite found a form of exercise I like and stick at properly even without the asthma. I also think it is ridiculous that aged 13, with outside sports my main trigger, they tried to say I had to keep my inhaler in the school office where someone would have had to go and get it if I needed it - playing fields not really close and I was trusted with it at primary school. My mum put a stop to that nonsense.
Right now I guess I'm glad I'm not sporty given my limitations. I'd notice it much more if I had to give that up - it's bad enough that while I can sing, I'm not nearly reliable enough to sing in my previous choir, or join any new music group that requires commitment.
I also hate the 'ooh look they have asthma and they do xyz'.
hi, I'm mezz1 not been on for ages. you are right , just because a lot of us have asthma does not mean, what works for one will , work for the rest of us that includes medications, exercise, I swim one day but I can't cope with too many people in at the same time, the water becomes too choppy and then affects my asthma. 3 days later I go in the gym, and I can't use the cross trainers. I developed an airway obstruction last year, which causes loads of problems , cig smoke , smoke from fires and bonfires cripple my breathing, perfumes, deodorants, shower gels which are strong all now affect my breathing. so going places can be a nightmare but I love to be out and have fun with people. BUT we are NOT text books so we don't need treating like one, we are individual people.
Yes ! I know exactly how you feel .
I have two different reactions from my family, some members think that as soon as you are no longer gasping for breath that you can return to doing everything for them and the other group don’t want you to move off the sofa !
My mother after my latest attach calls me every single day - goes like this -
How are you ? - oh, I’m fine ( my usual response )
Did you sleep ? - hmm couple hours ?
But you haven’t slept in days, that’s not good - yeah I know steroids and coughing do that ?
Have a nap - nah , it doesn’t work like that - steroids don’t let you do that
Yes! This is the classic conversation I have with my family! Suggest that I need a nap or take something to knock me out so I can sleep! When really it’s the constant wheezing and coughing that’s keeping me up along with pred 🙄
Yes! Absolutely classic response. I have had prostatitis for 23 years, with varying levels of pain and associated depression and, when I returned to work, everyone would say how well I looked, despite struggling constantly. I'm afraid it's the same with any hidden condition - you'll get far more sympathy if you put your arm in a sling.
I think people mostly mean well however... it's Still irritating and because it's something we live with and get on with people don't realise how hard it can be
The one I like is how is your asthma now... amazing I just have to take 3 inhalers, 2 tablets every day and occasionally I'm going to have a flare which will mean another load of tablets that make me eat like a pig and not sleep for a week... So excellent
I have an issue where I get quite a lot of cheat infections as much as 4 months apart and as little as 3 weeks (they tell me it's asthma related) ... my mrs (she is also asthmatic) was very unsympathetic about the whole thing because I mostly just get on with it... roll forward to when she got a chest infection and it hurt and she couldn't breathe and she was exhausted... I always get steroids when I have an infection and my partner said to the gp so it will be steroids and antibiotics, the gp replied it's not bad enough for steroids you only need antibiotics
So I think if people walk a mile in our shoes and feel a bit of what we feel like sometimes it helps them understand... sad fact is most people won't an don't really get the chance (although I'm not sure I would wish chronic health conditions on anyone)
will things ever get better?
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