Talking About How We Talk About Asthma

Talking about talking feels a lot like writing about writing.

Both remind me of college. I was an English major and I never, not once, did I aspire to a master’s degree in my subject. Another area of concentration, sure, but never English. Because that degree? Involves a whole lot of writing about other people’s writing about literature. In other words, literary criticism. While plenty of my friends enjoyed this sort of thing and carved out academic careers for themselves that pay them to do it, writing about writing is just not my sort of thing.

I do recognize the value of talking and writing about how we use words, but I generally leave the actual practice to other folks.

Except here.

If you missed it, last week’s Friday Links jumpstarted an interesting discussion about food allergies and how we use the words “asthma” and “allergy.” Points were made, knowledge shared, and education obtained. (By me, naturally. I know next to nothing about food allergies, in case you couldn’t tell.)

While doing a little behind-the-scenes blog cleanup yesterday, I reread that whole thread and thought about how, whenever I see one-sided articles about inaccurate medical information on the Internet or stories that imply the big medical sites written by health professionals are the only reputable ones, I always think, You’re just not getting it.

The patient/parent blogs and communities offer, as Sara mentioned and we’ve discussed here, valuable friendship and support. They’re useful for brainstorming, too, because sometimes you just need to bounce ideas off other people who know what the word “bronchospasm” means. (Very few friends in my in-person life do.)

But a key benefit of independent parent/patient blogs is that we don’t just talk about how to live with asthma or, in my case, how to raise a kid who’s living with asthma.

We also talk about HOW we talk about asthma.

And allergies. And chronic illness in general. And it’s something independent sites and blogs do better than the big ones.

That’s really important because changing the way we talk about something can change behavior, and changing behavior can change lives.

16 responses to “Talking About How We Talk About Asthma”

  1. Carolyn says:

    Asthma is such a difficult condition to describe with one word. One person’s asthma may be characterized by wheezing whereas another person’s is characterized by a tight, dry cough with no wheeze. If we had more words to describe the condition, it would make the communication process between parent, child, pediatrician, specialist, and school nurse a lot better.

  2. Sarah says:

    A good example of that is what I mentioned on Elisheva’s blog, where the words intended to reassure the newly-diagnosed can seem like a slap in the face to those who are trying to control their asthma. Perhaps a better way (for those of us who have a hard time getting under control) would be to say, “You shouldn’t accept poor asthma control” as opposed to “there’s no reason an asthmatic should be uncontrolled.” Same general meaning, but not as absolutist.

    And, also, a lot of the stuff coming out lately about poor med compliance causing flareups (and I’m sure it does) can also seem like an accusation to those of us who are uncontrolled, even if we know we’re compliant. One website I read (for medical professionals) described a hypothetical situation about a patient coming in with an asthma attack in a “what would you do?” kind of example… the hypothetical patient’s name was Ms Noncompliant. You can’t really get much plainer than that: It becomes obvious to the uncontrolled asthmatic that the medical community assumes first that we’re noncompliant with our medication, second that we’re doing things we shouldn’t and third is when they look into other causes… and while I understand that it’s probably the case for many uncontrolled asthmatics, they don’t give those of us who are compliant and careful enough credit… Some of them have gone so far as to say to me that there’s no such thing as a compliant uncontrolled asthmatic and I must be doing something wrong because there’s “no reason” I should be uncontrolled on the medicine I’m on. I get sick of being grilled to the nth degree about my meds, my compliance, my housecleaning, etc, and only then do they start asking about my known triggers, allergies, etc. That is, when they even take me seriously at all.

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