My Asthma Talk Pet Peeves
Here’s my list of things that really tick me off when I hear people talking about asthma, or to people with asthma. I’ll add more to the list as they come up.
1: “You can lead a normal life.”
No, you can’t. Unless you redefine normal, that is. You will have to look after your health more carefully than your neighbour. You will have to carry your rescue inhaler. You will have to take your control medications. You will have to control your surroundings and avoid your triggers. Period. This is not to say that you can’t live a full, fulfilling life. I do all the time. But my life isn’t normal, and I accept that. I wouldn’t want my life to be normal, because normal would feel wierd for me. I’ve never been normal. And I like being abnormal. And the sooner we disabuse people of “normal,” the sooner they can get to accepting the fact that their life, from now on, is not normal, and they should stop shooting for normal. Shoot for fun. Shoot for full. Shoot for fulfilling. But never, never shoot for “normal”.
2: “There’s no reason you can’t obtain full asthma control.”
Well, yes and no. That depends on what you define as control. However, the uninitiated (ie, newly diagnosed, and/or newly relapsed) will assume that you mean control according to whatever national guidelines their country uses, which don’t work for everyone. Plus, the all-or-nothing language creates the impression that asthma control is easy. In most cases, yes – but this sets up those of us who aren’t “most cases” for feeling as if our difficult asthma is our fault – even if we’re compliant with meds, trigger avoidance, maintenance of a healthy weight, etc. It also sets up those who don’t have experience in asthma control (relapsed “recovered” asthmatics or the newly diagnosed) for a cycle of self-blame because they don’t consider the fact that it will take them a while – a long while – to work out what works for them. It’s not easy to figure this disease out, and we shouldn’t be pretending it is. Because you know what? I think I would have dealt with my struggle for asthma control much better if I’d gone into it with the knowledge of “It won’t be easy, but it can be done, even if it may take months or years,” as opposed to “there’s no reason for poor asthma control”. That created false expectations for me, and it took me way, way too long to let go of them and look at my situation realistically. In my case, yes, there is a reason. It’s called “severe environmental allergies.” I have to work out how to deal with those effectively before I’ll be dealing with my asthma effectively.
3: “Asthma shouldn’t limit your life.”
Yes, it darn well should! Trigger avoidance is a limit on your life. It’s a small one, but it’s there. Spending time taking meds instead of farting around on the internet or having five more minutes in the shower is a limit. And so on. Asthma should limit your life. But you accept these small, tolerable limits to avoid much larger, intolerable limits (such as the inability to walk to class due to constant symptoms, permanent lung damage from uncontrolled asthma, or hospitalization).
Here are just a few of the things I don’t do because I like to take care of my asthma: clean out chemical storage fridges at work, vaccuum my home or mow the lawn when I’m flaring, spend an extended period of time in a smokey environment, enjoy bonfires frequently, exercise without premedication, travel without preparation, and farm chores. I choose to give those things up because I care about my health and my breathing, and that is what I should do.
Furthermore, these limits can be a good thing: Avoiding smoke means I do not, have never, and will never, smoke, unlike most of the people in my extended family. Watching what I eat means I’m at a healthy body weight, which has paid off in terms of improved overall health in comparison to my teenage years. Furthermore, unlike most of the people my age in my extended family, I do not suffer from prediabetes or high blood pressure (I’m 22. Someone my age shouldn’t be suffering from those conditions in the first place, unless there’s some sort of predisposing medical condition at play). It also means that I’m in good physical shape, which has paid off in no more insomnia that used to plague me as a teenager, and it’s paid off in improved stamina and strength. On a more humorous note, I have a ready excuse to not mow the lawn about half the time, which I’ll never argue with. (yes, I flare about half the time. Yes, I know this is not a good thing. Yes, I’m working with my doctors about it.) Also, I’ll never have raw and bleeding hands from being out-of-practice with throwing hay around again. That’s a plus. :p
4: “Asthma control is simple.”
This isn’t something that’s ever said outright, but it’s certainly implied in a lot of circles. It’s also dead wrong. With the exception of mild intermittent asthmatics, the equation for asthma control is often complex and multivariable. Sometimes you have triggers that only trigger you in combination with something else (dogs, which must be wet to trigger me… Clean dry dogs don’t trigger me, or at least they don’t trigger me so badly that I notice it), or certain conditions that will worsen the effects of other triggers but won’t trigger you on their own (stress and humidity for me). Complicating matters is that more than one thing can be triggering you (cats, dust and summer pollen, last year), and removing one of those things may not make a difference in your perceived level of control so you won’t realize that they trigger you until you try removing all of them at once, and even then sometimes it takes a while for that to kick in. Sometimes, things you do to control your asthma can be at odds with each other (avoiding dust and needing to clean, for example). So on and so forth. Asthma control is complex, confusing, and downright frustrating at times. But, and here’s the big thing, it’s usually possible.
5: “You don’t have to make sacrifices for your asthma.”
BULLSHIT. Plain and simple. I gave up my cats. I gave up riding horses. I gave up taking in hay. Those are sacrifices. Some people give up foods they enjoy or take up activities they don’t like but know they have to do to improve their health. Those are sacrifices. And they’re necessary in a lot of cases. Hell, even committing the time to keep track of symptoms and inhaler use is a sacrifice (albeit a minor one). Committing money to medication instead of to movies, extra food, gym membership, or whetever is a sacrifice (and a big one when you’re living on a student’s budget like me!). And, as with the limitations above, I judge every sacrifice I’ve made to be minor in comparison to the effects that continued uncontrolled asthma with the severity I was dealing with would have had on my life. What sacrifices to make are up to each individual asthma patient (or family).
6: “Most children outgrow their asthma.”
This is, bar none, the single, most harmful asthma myth I’ve ever come up against. Period. I’ve experienced first-hand the difficulty that it can cause a “recovered” asthmatic when their asthma worsens, especially if your physician(s) buy into it as well and don’t check you for asthma when you suddenly start having symptoms of uncontrolled asthma. It is directly responsible for 1) my ignorance that the pain and discomfort I was having on exercise during my teenage years was my asthma returning, 2) my ignorance that taking a month or two to recover from a cold is not normal and could be my asthma returning in early university, 3) my ignorance that not being able to keep up with my peers despite being fitter than them in terms of amount of physical activity was probably my asthma 4) my ignorance that normal people don’t have random coughing fits, and that it was probably my asthma, and 5) the decompensation and resulting nearly-a-year of very bad, uncontrolled asthma I had starting in the last term of my final year of university, and all the academic and social consequences of that. It couldn’t be asthma! I “outgrew” that!
In actuality, roughly one in twenty kids with asthma outgrow it. It’s fairly common for kids’ asthma to change in severity, but very uncommon for them to truly outgrow it.
7: Asthma is all in your head.
Though this hasn’t been widely accepted by medical professionals in decades, it still holds a lot of stock with non-professionals. Fact is that, while anxiety, stress, depression, etc can trigger asthma, it’s not the root cause of asthma. The Asthma Society of Canada’s page, “What Is Asthma?” explains this disease much better than I can. But the fact is that asthma causes vary marked, measurable changes in your breathing, which are measured with things like peak flow meters and spirometers. An asthma attack is not an anxiety attack (although one may trigger the other in some people). It is not in your head. And it can be deadly.
As a final note, I hope nobody thinks for a moment that this is a negative post. I’m not calling for negativity. I’m calling for realism. Asthma is not all doom and gloom. I’ve learned a lot of important things because of my asthma, and I’ve matured a lot as a person (that’s a topic for one of my future posts, I guess), but that said, it’s not without struggle. It’s not “take your blue rescue inhaler and you’ll be fine.” It’s a challenge. It’s a battle. It’s an obstacle to be overcome.
It’s not the end of the world. But it’s not simple, easy, or quick to deal with, and stop making that impression for people. You’re not helping them. You’re just giving them false reassurance.