The Invisibility of Asthma

One of the problems with asthma and the concept of *looking* sick, beyond your basic lack of understanding in the greater non-asthmatic world, is the way a chronic illness with little to no visual cues doesn’t generate much interest in changing third-party behavior.

Recently, Danielle over at Life with These Lungs discussed how public smoking, both indoors and out, can start her lungs flaring pretty seriously. It struck me, then, how the right people – smokers themselves – either aren’t hearing or aren’t understanding or aren’t caring (or all three) about this very right message:

Your secondhand smoke hurts people. Sometimes, it kills them.

And I think asthma’s invisible nature is a major part of that problem.

Longtime Asthma Mom readers know that, to my everlasting shame, I used to smoke. Back before I had kids and my older daughter’s diagnosis taught me to appreciate good lung health, I averaged about a pack a day and two packs on late nights out. In fact, it was that first pregnancy with AG that made me quit for good. So in that message above, by your I mean mineMy secondhand smoke could’ve hurt people. My secondhand smoke could’ve killed them.

It looks ridiculous when I type this out, but when I smoked I just didn’t understand how much my cigarettes could hurt others and not just me. Partially, and contributing to that everlasting shame, I was too self-absorbed and too focused on having a good time to care.

And partially, I never saw my smoke affect anybody but me. That’s not an excuse I’m making for myself, but it is the point of this post. If asthma patients could let smokers look inside their red and ravaged bronchial passages for just two seconds – well, let’s just say I certainly would’ve quit smoking long before I did. Or at least quit doing it around non-smokers.

The same goes for contributing to air pollution in other ways or sending contagious kids to school. These choices are easy when people have no one in their immediate circle with respiratory problems and/or who can’t *see* and therefore, understand, the seriousness of an invisible illness like asthma.

That’s why I’m writing this in honor of National Invisible Chronic Illness Awareness Week .

Because that 10 year-old kid I walk around with all the time?

Is not really as healthy as she looks.

Or my asthma blogger friend, Kerri, who just started university in Canada?

May have to stop and catch her breath if she’s walking along beside you.

And this sentence below? Is never a good idea:

But you don’t look sick.

10 responses to “The Invisibility of Asthma”

  1. Danielle says:

    Nice post : )

    I have a question. In Canada, cigarette packs come adorned with various messages and gruesome pictures showing the deleterious effects of smoking. Do they do the same thing in the US?

  2. AsthmaGramps says:

    One of the things we stroke patients often comment on when we are off in a room hiding from all you normal people out there, is how much we tire of people saying, ” but you don’t look like you had a stroke … ” I guess the self pulled wool over eyes is common to a number of malady’s. I too used to smoke, and I frankly couldn’t stand being around people who smoked. Never did think about how I was hurting folks!

  3. Noelle says:

    I’m a totally guilty ex-smoker as well. Towards the end, I couldn’t even stand the looks on the faces of people that passed me, and that helped me quit. Sadly, I don’t think guilty looks work on most of the rest of the population.

  4. Her Grace says:

    My own husband (and he’s a *good* husband) has been guilty of this if my asthma exacerbation goes on too long, or if I remind him that we can only buy the non-smelly paint to redo the kitchen, or that he can’t sand that piece of wood in the house. The list goes on. My asthma is inconvenient for him, and that’s hard to take when I look well.

    And that’s coming from a person who loves me!

  5. Mabeane says:

    I love this post. I have had asthma for four years and as an older adult struggle with the “but you don’t look sick” statement.
    I have lots of breathing issues and am very sensitive to things that smell…fabric softener on clothes, perfume, paint, air freshener but clearly don’t look like I have a chronic disease so get looked at funny when I back away.

  6. kerri says:

    GREAT post Amy!

    Oddly enough, I read this (in academic writing, as you know) and then when I was heading back across the street to the main building, I walked by about ten smokers (in a two minute walk)!

    The thing that mad me maddest is that it’s a smoke free campus! Not to mention I’m already sick (because of school!). I wanted to hand them a link to this post

    And Mabeane –
    I have the same sensitivities as you do, as well as asthma. The sensitivities actually started getting bad a year before my asthma cropped up. I’m planning to write an entry in my blog about this today or tomorrow.
    I definitely understand how frustrating it can be to walk by an overly fragrant store in a mall and become overwhelmed by the EVIL chemicals, or to have to move away from somebody on a bus, and whatever else. Thanks for mentioning this!

  7. Amy says:

    Danielle–We have warnings, but not photos. Or at least, we didn’t have photos when I was buying cigarettes, but thankfully that was 10 years ago, lol.

    AsthmaGramps–Yeah, her asthma has taught us a LOT.

    Noelle–I wouldn’t, based on your writing, have pegged you for an ex-smoker, but then I guess no one who knows me now would guess that about me, either.

    Her Grace–Just 2 nights ago, Mr. Asthma Mom had both girls laughing and laughing, which is one of AG’s triggers. So of course she was coughing and coughing, too. I said, “Um, inhaler?” And he said, “No she’s OK. She’s just laughing too hard.” And I said, “Um, yeah. INHALER.”
    Invisible illnesses are hard. 🙂

    Mabeane–Hi, and thanks for visiting & your comment. I think it’s difficult, too, when seemingly innocuous substances set asthmatics off. Everyone knows smoke is dirty, but they don’t realize stuff that smells “good” is a problem, too.

    Kerri–I did see that on Twitter–sorry! We should sell t-shirts, or something.

  8. kerri says:

    Haha no prob. :). T-shirts YES! Let’s get this going on!

  9. around the blogdom during invisible illness week ‘09 « hold your breath to breathe says:

    […] Also, please take a look at Amy’s post on the invisibility of asthma. […]

  10. rick frea says:

    Another thing to note is that many asthmatics go out of their way to make themselves appear more normal than they are. They hide around the corner when they puff on their inhalers, they keep their disease a secret from their co-workers, etc. I would imagine this compounds the problem of “invisibility.”

    Great concept.