AUKs ""terrified"" campaign

Hi guys, for me, like I am sure a lot of you out there too, AUK has been a bit of a lifeline for me. It's helped me to come to terms with how bad it is become, allowed me to talk to others in similar situations, get to know my asthma better and meet some amazing people. Some of these who I can now fortunately say I know in the ""real world"" and not just online.

So I know that there are a lot of people out there who share the same thoughts, feelings and fears as I do.

Many of you (as I know there have been times I have) have felt snubbed, belittled, made to feel as though you are over perceiving symptoms or else just attention seeking. A lot of the time, because a lot of us don't fit into the nice normal tick boxes for asthma and don't do the things that are expected of us on que.

The biggest thing that I have encountered and the thing that has done the most damage to me when it comes to getting help is when doctors turn and at to you that you aren't having an attack, it's anxiety. I find myself battling with what is right and what is easy; it'd be right to go in early, get treated, be on my way - and then I wouldn't have discharges that aren't nice, but that wars with the fact that if I go in and it's not that late and I can talk and physically appear ok then I'm not always taken seriously until it becomes a crisis, for me it seems easier to go later when I don't have to prove myself, when it's clear that I really am very ill.

Another thing thy is frequently said to me is ""doesn't your asthma scare you?"" reply ""no"", ""how can not being able to breathe not be scary?"" Answer ... ""If spend my whole life being scared, what way is that to live your life? In fear!""

So enough waffling. My concern about the campaign, is that by having the word ""terrified"" directly linked to the campaign, is it going to add to the misconception that we are all terrified that we are going to die any second? Will it add to the fear and anxiety stigma that we are all too often subjected to?

Also anxiety and fear is a natural part if life. I'm not saying that it is wrong, I'd be lying if I said I was never anxious etc. And another thing, even if a person did show up in A&E for a panic attack, how are they wasting time etc, asthma or anxiety, either way that person is suffering, aren't they? The only thing that is different is physiologically, so therefore treatment, but why should attitude be different?

I think that awareness should most certainly be raised, too many people do not realise how dangerous it can be (even to ""mild"" asthmatics). I'm the worlds biggest advocate for getting asthmatics to get help early, but the things I've had being said to me have done a lot of damage. I just hope the stigma isn't increased by this!!

Any thoughts anyone? I've just been thinking aloud!

Laura x

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For many years I had trouble accepting the diagnosis of asthma because my stereotype of an asthma attack was little different from a panic attack. My asthma flares never present with anything ressembling terror or panic. Because I only half believed the diagnosis, I also was inconsistent with things like preventers and probably suffered more from asthma than need be because of that. So I think another problem with the campaign is that it can actually get in the way of asthmatics taking their condition seriously.

What finally helped me realise that some people can be quite calm during a flare and it still be asthma was this essay: healthcentral.com/asthma/c/... . Basically this is me and the way I deal with asthma and always have since I was a tween and first found myself stopping what I was doing just to sit still and breathe because I really couldn't do anything else. Reading that essay was an important turning point in the way I dealt with asthma and helped me take things much more seriously.

The impact of that essay on me raises another issue:

I really think it is important to publicize that asthmatics can respond in many different ways and it is all asthma. Patients need to know this. So do doctors. We don't all have the same coping mechanisms for life itself. Why would we have the same coping mechanisms for illness? Especially for those of us who remain uncontrolled despite heroic attempts at medication and compliance, eventually our response to asthma begins to look like our response to life in general. Whatever we do to deal with general life stress - for good or ill - shows up in the ways we cope with asthma.

The same author also has a nice series of the different styles of dealing with asthma along with their strengths and weaknesses: healthcentral.com/asthma/re... . But one essay like that is not enough. I would love it if AUK had a campagin showing the huge variety of ways that asthmatics react.

A third issue: panic attacks vs. asthma. They aren't the same thing even if some of the symptoms overlap (rapid breathing, high heart rate). It is VERY important that doctors, patients, and friends and family of patients realize this. Sometimes the confusion can go both ways. A while back an AUK poster reported that at least once she knew she was having symptoms of a panic attack and the doctor kept insisting she was having an asthma attack. It is hugely important that the difference is clear, especially if a doctor want to treat anxiety with sedatives: sedatives can depress respiration and would make an asthma attack worse - even dangerously so. Even if both anxiety and asthma are present at the same time, a doctor who denies the simultaneous asthma flare and treats only the anxiety is putting his/her patient at risk because they won't take due caution at the potential for exacerbating the asthma.

* ncbi.nlm.nih.gov/pubmed/924... - sedatives suppress CNS and respiratory drive

* nationalasthma.org.au/handb... (Austrailian asthma guidelines):

- Sedatives are contraindicated during an acute asthma attack.

- Agitation during an attack may be due to bronchospasm and hypoxaemia and is better treated with beta2 agonists and oxygen.

- Most sedatives, including benzodiazepines and zopiclone (and to a lesser degree, zolpidem), will blunt respiratory drive

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Thanks so much Laura for posting this - and Beth for your response! I know it's something we've talked about a lot and been frustrated by (oh and 'frustrated' was my word for the campaign!)

I have so often tried to explain to doctors that I do not get anxious or panicky with symptoms. I realise it would be a legitimate reaction but I just don't - for me it's an 'oh s***, this is so annoying and it's interfering with life\ though I do also dislike the sensation and find breathing hard work! So often when trying to be understanding they say 'I would be terrified if I couldn't breathe' and I have to say yes, but maybe not if you'd lived with symptoms daily! My new GP, who so far seems really good, got me to come in for an appt to discuss 'impact of asthma' and had this as an opener - but she seemed very open to taking on board what I said and agreeing that anxiety/panic was not my reaction, but that maybe some of my reactions (ignoring it in the hope it will go away) are perhaps not the best idea either...

I am also getting increasingly cross with my consultant because he keeps asking me if I think I am going to die when I call for help. He has his good points and I'm not planning to change again (the team - he was not involved - were v good when I was in). But he's seen me a lot now and I feel like he really should know me better - it seems as though I say something, he seems to understand then asks the same again, and I've had doctors who met me 5 mins ago have a better grasp of how I react than he does. He has never actually seen me at my worst and I feel that with him, and perhaps with others, there is a tendency to make decisions and assumptions based on how they think you react when symptoms get worse or day to day, and they never actually listen or ask if they haven't seen it! For me, I feel like I don't overreact and my family and friends (plus some more perceptive drs) tend to agree, so actually in my opinion it's unprofessional and dangerous to base your clinical decisions on assumptions like this without actually asking. If someone is the type to leave seeking help till late, the fact that they have then got help surely should be saying something in itself?

For me, like Laura, the concern that I will be treated as though I'm anxious and don't need asthma treatment/am overdoing it also puts me off getting help, as does the fact that when I say I have been to hospital my cons basically has a go at me and says I didn't need to because my PF was ok and he didn't see me struggle to breathe. It makes me think I won't go again unless desperate, and being told I am just over-perceiving it has got me into the habit of pushing things when my symptoms tell me it's really not a good idea (I""d probs do it anyway, but then I've also had doctors tell me I'm fine so of course I do it more!)

Apologies for the ramble, it's Friday night and I reallly need sleep!