What to say to kids when they see you flare

Two days ago I was at my best friends house. Her kids and I are very close (known them since birth, consider them nieces and nephews). At dinner I started coughing up a storm. Two puffs of ventolin calmed it but after I was back to breathing like a normal human being, the oldest told me that it was really scary seeing me struggle.

It upset me to see him worried for me. I told him that it was a lot scarier on the outside than it felt on the inside. I don't know if it reassured him or not. He told me in response ""that's because you can't see yourself."".

Any ideas of what to say to kids who worry about an important adult in their life? What do those of you with kids tell them? The last thing in the world I want is this kid or any of the younger ones being scared or worried.

4 Replies

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  • This is a really tricky one, as obviously, even for an adult, a bad attack can be scary to watch! I don't think you are going to be able to do much to fully normalise it for them, however over time (and the more they see you flare) the less it will worry them - have they seen much of you struggle? It might just come naturally with time - knowing that eventually things do get sorted, even when things look and sound really scary.

    I think a main fear for kids is not knowing whats going on. you don't say how old the kids are, but clearly at least some of them are old enough to articulate their fear of the situation, meaning i would suspect it would be possible for you to explain (n an age appropriate way) what is actually going on, but more importantly explaining how inhalers work to help open lungs will help them realise that there are things to stop it. One possibility (and it might be tricky) is to think of a little 'task' they can do if you're struggling, as long as its done in a way that wouldnt make them feel responsible for your wellbeing so a kind of ""well...if i was struggling and you were worried you could do this to help if you wanted....."" something simple, like fetching inhalers, getting a glass of water, passing you handbag for peakflow meters, something along those lines so they feel they can be doing something productive to help you.

    Do they know you're in hospital sometimes? I can't remember if you're very in and out at the moment. And it also depends on their ages, but the 15 year old who spends a lot of time with me was getting quite stressed out when i was getting to a normal level of breathlessness, and so i sat down with her, explained how to help me in a bad attack, what happends if and when you ring 999, she also knows how to inject me with HC and how to spot adrenal crisis. A lot of the ""how to spot"" stuff came in handy with dealing with her anxieties as it meant that she quickly realised that an awful lot of the time she had previously been worried there was no real need to be. (so, unable to talk at rest is one thing she looks out for, meaning she feels much less worried when i cant talk going up a hill, shes also old enough to understand PF and that if im over 75% there is less to worry about etc.)

    With my very little nieces (2 and 5) I have let them decorate my spacers and inhalers with stickers, and i get a new sticker if i can take my inhaler at bedtime without making the harmonica noise. Yes this leads to some very embarrasing discussions in public where other adults think im demanding a 5yr old gives me stickers for taking my inhalers, but it normalises it for them - they view it as just a job that needs to be done, and again is giving them something to do. It also clarifies that i am not hiding it from them - being completely open and honest has its drawbacks, the littelest has had inhalers in the past and i do worry she'll go for my nice pink inhaler, but i have a lot of meds around anyways so do have to keep a close eye on them no matter what!

    It might help to have a sit down with them (or their mum and she can relay the info) and see what specifically worried them. I'm sure over time it'll become a bit more normal, and with it less scary. Hope some of these ideas help. And hope you are well :-) x

  • Thanks, Soph - you've given me a number of good ideas.

    The oldest who made the comment is 10 and very bright. He saw me struggling a bit again today, but now that he's alerted me to how he feels, I could see the worry on his face. This time I reassured him I was OK immediately after I was done coughing. It seemed to help. I think figuring out a way to explain what is happening when I'm coughing might help as well. Thanks for reminding me how worrisome it is for kids when they are left in the dark. (We grownups tend to forget that information is more reassuring than being cryptic and hush hush).

    Fortunately I've only had one hospitalization, but he and his siblings all came to visit me when I was there (according to their mom, they specifically asked to come).

    I've been relatively stable recently and haven't had anything that couldn't be handled with 2 puffs or a neb in over two months (yeah! - weather at this time of year is very dry here in Israel so not much growing)

  • My best friend's two-and-a-half year old was 'in charge of' my inhaler and spacer when I was there at the end of January. She very quickly worked out how to assemble it all, and was amazingly good at spotting that I was coughing or struggling even before I did - she would hand it to me and tell me to take it!

    She saw me very, very poorly as I had what we thought was a borderline anaphylaxis, but actually was probably just a major allergy + adrenal crisis. Our friends are both medic-ish - one a mountain first aider and the other a biomedical scientist, and they were asking if we needed an ambulance. As it was I managed to recover (I probably did need hospital but didn't realise). For their daughter it was just another interesting experience - it was scary for her to see me so poorly, but then little kids at nursery get poorly and puke all over the place and have very bad coughs and things, so she didn't seem freaked out. She was very pleased when I was better enough to play again.

    So - I think it depends on the child, but generally I'd say that if the grown ups are giving out 'it's fine' vibes, the kids pick up on that.

    I love Soph's stickers-on-spacer game - excellent work!

  • I've had to tackle this topic a number of times, but more often and recent with my flatmate. I'm lucky that she also has asthma, but hers doesn't bother her as much as it used to and she's relatively controlled. But when I have an attack I know it scares her. She always says that she wants to be able to help and it's scary seeing me go off in an ambulance and often wonders if I'll come back or not. And she's 21, so it doesn't only happen with kids. My way around it was to try and assure her that I am in charge of when I decide to call an ambulance. I also try and be as open with her as I can. I'll tell her when I'm having a bad day, and she knows how my peak flows etc are doing, so is able to recognise things for herself. And she knows that I am sensible enough to know to call an ambulance before it gets silly. But it doesn't stop her panicking when I even have a regular neb sometimes.

    I think it's in some ways a fear of the unknown. None of us know what could happen when we take the magic ventolin (or Bricanyl before I get shot :P), and whether it will work or not. But I think one of the main things is for ourselves to stay calm. You can be a duck, and look completely calm but be completely panicking underneath sometimes even when you're really unwell. But anyone I've ever stayed with has always had ""the talk"" from me. I can go downhill quite quick, and I found that if I sit down for 10mins with them and just explain what happens, why it happens and what to do, that they know when you really do need help and sometimes if you have your inhaler or a neb, they don't worry as much because they know it's something that you do. However if you're needing more than your usual and you're struggling more than normal, then you need help. I find being as open with people as I can, and just saying ""Look, I may need a neb, or my inhaler a few times. Don't worry about it, every asthmatic at some point needs their inhaler and it's there to make things better, but I will tell you if I need to go somewhere quiet or have an ambulance"" and as a result if I'm out with friends and pull my neb out, they just get on with what their doing.

    I also have an 11 year old little brother with learning difficulties, so from a very early age he's known about my asthma. He even knows that if I have 4 puffs of my inhaler and I need to stop for breath in the middle of sentances to go and get my neb. It's not necessarily something I'm overly joyous about, but in some ways I'm glad he knows what to do. When we've had paramedics come out to my house, he's sat in the middle of the floor and played the Wii. I think he's so chilled about it because we're always very open with him, and he knows that ""when I go in the ambulance I'm going to get lots of medicine to make me better because the medicine I have at home doesn't work as well as normal because I'm silly and try doing things that make me tired"" and this teaches him in some ways not to be scared because my inhaler, nebs, tablets, and even ambulances are there to make me better, and even though it looks scary, it's not going to be for long because they can make me better.

    I've no idea if any of this makes sense, because as you can see it's late and my head's scrambled. But I hope you're feeling better soon and that this helps :)

    Vicky xxx

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