Counting Down a Decade of Asthma – No. 3, No One Understands

Part of the series A Decade of Asthma.

And they never will. Seriously, not ever – not unless they’re living with asthma themselves or caring for someone who is.

My family has tried to understand over the years, and many of them have tried to help, too.

Various friends have attempted to listen to explanations of flares and bronchodilators, and certainly they’ve sympathized with stories about my daughter’s struggles to breathe, trips to the hospital when she was little, and my anxiety over both.

Asthma is largely a disease that no one outside my four-member family ever sees, not in its truest form. Kids at school and friends playing at our house may see AG use her inhaler and some family members have seen her in the hospital, but it’s not quite the same as watching her doubled over from coughing, desperately trying to catch her breath. Since severe flares tend to occur at night or when she is sick and therefore contagious and quarantined in the house, no one experiences AG at her very worst except the Steadfast Sidekick, Mr. Asthma Mom, and me.

And that’s okay because, really? How could anyone else ever understand the terror, the racing heart, the nausea that grips you in the middle of the night as you lie awake, listening to a harsher cough than you thought possible for a child to make, wondering if this will be the night she stops breathing? That’s not a fear most parents can imagine having, not until something like an asthma diagnosis makes it their (read: “my”) reality.

Failure to understand makes it easy for other people to think we’re overreacting or coddling our children too much when we take drastic (to them) steps to reduce their exposure to triggers and treat their health issues. Related, here are some of the more annoying pieces of unsolicited advice I’ve heard over the years:

“You need to put her in some kind of sports, help her grow out of that asthma.”

“Bleach? I can’t use bleach around her? Why not? I don’t see how that could bother her.”

“I don’t get it. It’s just asthma, right? Lots of people have asthma.”
“Well, I get colds easily and (fill in the blank) doesn’t give me problems.”

I am not even kidding on that last one. Rather than respond to comments like these and try to force an understanding of my kid’s asthma that is just not likely to happen, even with people who mean well,

– I just go ahead and do what I have to do.
– I make no apologies for the steps I take to protect my child.
– I find someone who’s fighting the same battle, who understands, and I talk to them about it instead.
– (Hence this blog.)

22 responses to “Counting Down a Decade of Asthma – No. 3, No One Understands”

  1. Leigh says:

    I have heard all the same comments and more! Expecially
    after we ended up in the ER Christmas Eve and didn’t leave
    house on Christmas. I love your countdown and the entire site. It’s been such a great resource and comfort to me. I check it everyday. Keep it up, you are a great resource to all the new asthma moms.

  2. Mabeane says:

    Oh this is familiar territory. Thanks.

  3. Sara C. says:

    So familiar…this year, I got a comment from a friend, after my daughters got the H1N1 vaccine…”I don’t know what you said to get the shot….MY daughter is too healthy” People outside the circle really DON’T get it.

  4. kerri says:

    Another issue with the concept of invisibility and asthma, eh? (Oh look, my Canadian is showing ;) )
    As you know, this is something i struggle with often–people not getting it. Like, even when I went for my flu shot (the first time I went for seasonal and didn’t end up getting it) and the nurse rattles off the “high risk” list, and is all the while being quite rude and mean. I was speechless, because aside from being a child or the elderly, you can’t SEE “high risk”. So, it can even extend to health care–people don’t get it.

    But, worse, is my friends with asthma, who know what it feels like when your breathing sucks sometimes just don’t get it either. (“I really want to go to the gym with you, but my lungs are freaking out and I can’t”. Cause even if I say “flaring” or “yellow zoning”, my asthmatic friends probably won’t get it… Or why I end up in this area so much.

    Loving the posts, Amy! I’m sad there are only a couple left!

  5. Danielle says:

    Oh Amy, I feel like I could be reading my mother’s journal. Based on what I could tell as a child, I think my mom went through many of the same ebbs and flows as you’re describing here.

    I remember one day, while she was driving me to school following my millionth appointment in a row, she said “well, I guess you’re just one of those kids who needs to go to the doctor every week”. At the time I thought that this was a pretty obvious statement, but I guess she was having an “acceptance moment”

    It also took her a long time to embrace instead of resent the meds I needed to stay healthy.

    This is a really cool countdown, and really rings a bell for me even though I’m not a mom.

  6. Kelley says:

    Thank you… for making feel as though I am not entirely insane. One of my girl’s main triggers is cat, and until we found this out I had never realized how many people have them. I got so exasperated for a while trying to explain to family members who have cats why I would not bring her over… until I just gave up trying. Thanking for giving me (and others) a sense of validation. A lot of my family really makes me question my parenting and whether I am too over-protective. I cannot tell you how much it helps knowing that it’s not just me. Thank you again so much for this site!

  7. Steve says:

    “I don’t get it. It’s just asthma, right? Lots of people have asthma.” Don’t ya just love it!

    I remember when I was 16 years old during a severe flare up, telling my grandmother that I couldn’t breath and felt like I was going to die. Her response was……. “Don’t be silly Stephen, no one has ever died from asthma”
    12 hours later I had a respiratory arrest and coded in a hospital elevator.

    Bless her heart, even after that event, she was convinced that asthma was just one of those nuisance diseases, that a little shot of brandy could make better.

  8. Elisheva says:

    This post strikes home. I hate it. I also got the same comments as Kerri when I went to get my flu shot. The receptionist, someone in the elevator and someone waiting in the waiting room tried to tell me “Not everyone gets a shot. Just special people.” I KNOW… Just wait til you see how sick the common cold makes me….

  9. Amy says:

    Leigh–I’m so sorry for your Christmas Eve experience! Somehow, my daughter’s managed never to flare on Christmas & I’m so grateful for that. Anyway, thanks! And I’m glad it helps.

    Sara & Kerri–Isn’t it crazy? The H1N1 shots were so controversial to some people, but then the people who actually wanted them and qualified to get them first, ended up hearing comments like these! Maybe I should do another countdown on another subject, Kerri–or maybe YOU should do one.

    Danielle–Thanks, and I think the acceptance part must be just as hard for you guys as it is for parents/caregivers like me. Nothing’s easy about this, is it?

    Kelley–Aw, thank YOU. Your words mean a lot, really. It’s hard not to question yourself when others are so vocal about doing so, I know, but at the end of the day–you know you’re doing the right things to take care of your child.

    Steve–Seriously, it boggles the mind that you of all people have had to hear that, too! People really don’t get it!

    Elisheva–You should go back and visit when you get a cold, lol.

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