Say What? 10 Things I’d Rather Not Hear About Having Asthma
I’m coming up on eight years of living an awesome life with asthma. I don’t feel that asthma limits me from what I want to do, for the most part. Yet still, despite how much I own it, there are a lot of people out there who don’t get it—my friend who has type 1 diabetes and I actually had a conversation about this the other day, the things that people say that maybe they mean well, but are so misguided you just have to shake your head.
Some of these people mean well, and others just don’t think before they speak. Either way, here are 10 of the things I’d rather not hear about this disease that I’m going to have the rest of my life—a disease I hope the people saying these misguided things never have to live with.
Unsolicited advice about asthma is annoying
"Taking so many medications can’t be good for you. You should get your asthma under better control."
Wait, can we rewind a second here? I can’t just magically attain better asthma control—that’s kind of what medication is for. Absolutely, trigger avoidance and environmental factors are important, but sometimes unchangeable—or, their impact is not a significant enough change to be able to decrease medications.
I don’t just take medication for fun—even if taking an inhaler is relatively quick, whether or not I took my meds (and when I took them) often occupies some space in my brain. And between you and me (…yes, I know, hello internet), I’ve tried reducing all of my meds at some point in time (often more than once), and I end up just where I started.
“Oh, my coworker’s daughter’s friend died from asthma. Is your asthma that bad?"
The death talk doesn’t help anybody. And it’s even worse when you’re aware that a lot of the people who die from asthma are the people who have mild or intermittent forms of the disease and were unprepared, or unaware of what was happening because it had been so long since they’d experienced symptoms.
The brutal reality of asthma? Everybody’s asthma can become that bad—that’s why it’s important to carry medication, and pay attention to your body—if something seems off, act on it.
“You know, if you just thought more positively, you’d breathe better."
Okay great. You know what? I believe in the “Change your thoughts and you change your world” wisdom of Norman Vincent Peale. And I know that all positive thinking has done has made me go from “asthma sucks, this is stupid” to “asthma sucks, this is stupid, and I’m going to do something about it by sharing my story."
My asthma itself though? Yeah that’s exactly the same as it was when I hated it more. I’m just less angry.
“Well, asthma is treatable and really common, so it’s not a big deal."
Asthma is treatable, yes, but depending on its severity it can still have a profound impact on your life. When you’re short of breath, or coughing all the time, and have to change your plans or do things differently because of asthma, it sucks. Not breathing well is kind of a big deal.
“If you just exercised more, your asthma would probably go away."
I’ll give you some credit here, Hypothetical Person. Only some though. Reducing weight, for those who are overweight or obese, certainly can reduce asthma symptoms. However, if that person truly has asthma (and not an asthma mimic caused by the effects of weight on the lungs and diaphragm), guess what? They may be able to breathe easier, but their hyper-responsive lungs will still be hyper-responsive and twitchy.
I’m a healthy weight, and I could stand to exercise a bit more. But, even when I was at my most active my asthma sure as heck did not go anywhere. (Ask any marathoner with asthma. They started training and finished the race with the same lungs they started with—ones that tend to freak out for no reason.
“Is your asthma that bad that you have to take an inhaler with you everywhere?"
Do I like being uncomfortable because my breathing sucks? Nope. Do I want to make myself feel worse because I don’t have medicine? Nope. So yeah, maybe my asthma is that bad, or maybe I find it a lot easier to be prepared than to have asthma symptoms and have nothing to do about them. Or maybe both.
“Are you sure you’re not anxious?"
Absolutely positive. Guess what—I haven’t gotten this question from a doctor since we got my asthma under better control. If you are having issues breathing a great deal of the time, even if your symptoms are not super severe, that’s going to make anybody a bit anxious.
Some people with asthma also have anxiety issues—they could benefit greatly from anxiety intervention, whether that’s therapy or meds. Me? I have asthma—and I am sure it is asthma and not anxiety. I know my body—they feel different, at least for me.
“Well, treatments have gotten better over the years, it could be worse."
Actually, with the exception of some new combinations of medications, and the new biologics on the market (none of which I presume will significantly improve my own asthma yet—and none of which I’d probably be able to take given the price tags), asthma treatment has not really changed a ton in decades. They may have change delivery devices, or made a bronchodilator last longer, or paired different combinations of inhaled steroids and long acting bronchodilators, but guess what? They’re the same basic drug as they were before, with different names and in different types of/coloured devices.
Delivery options have changed—the actual drugs? Only a tiny bit. So yeah, it could be worse, but it could be a lot better.
“Have you tried that ancient seaweed root treatment? It cured this lady on TV’s asthma."
First of all, there’s no scientific cure for asthma. Second of all, if there were some natural “cure” for pharma/asthma researchers would be all over that and patenting the ancient seaweed and discovering how to clone it to bring it to market. They’re smart that way. Penicillin is a perfect example of that.
“You’re going to get dependent on/addicted to that inhaler if you keep taking it so much."
Yeah well I’m a little bit more dependent on/addicted to breathing to care much about that right now.
In all honesty, yes, there are people who do use their rescue inhalers too much without accessing proper care or without using daily meds to prevent this. Bronchodilator overuse is absolutely a thing. But bronchodilators still save lives.
My personal reality is that I am not one of those people who can even dream of controlling my asthma with just one inhaler, and a lot of us with asthma are not those people who delay care and rely on our rescue meds for long periods of time without trying something else or at least consulting our doctors. Please trust that when I say I’m working on it, I’ve already got a good number of other meds on board, and I’m just waiting for them to do the trick—I know when I need to seek care, and I know these people mean well… But sometimes I don’t need to be made more aware that I feel like crud.
Lived experience tops hearsay
While a few words might have to be changed, a lot of these points apply to a lot of different chronic illnesses. Only by living with your own experience of any chronic disease do you know what it feels like—and even then, what works for you might not work for somebody else. Before you tell someone how to better manage their disease, think about if you’re actually being helpful, or if you’re just trying to make yourself feel better about another person’s situation you’re uncomfortable with. Trust that we have our own best interests in mind, and are trying to do the right thing with ever-changing variables, and focus on being a good friend—the same way you would if we didn’t have a chronic illness.
Have you ever gotten "moon face" as a side effect of prednisone?