Ask the Advocates: Explain the Hardest Part of Having Asthma

When you have asthma or are the caregiver to someone with asthma, you understand how difficult asthma can be. During asthma awareness month, it is important to start conversations about all aspects of asthma that people may not regularly see or experience. We asked our advocate team, “How would you explain the hardest part of having asthma to someone who does not have asthma?”

The hardest parts of having asthma, from our advocates’ perspectives

Theresa said:

If I were explaining the hardest part of having asthma to someone who does not have asthma I would really talk about how asthmatics have to be very meticulous with everything we do. We are not always able to do spontaneous things. I am a planner and also a severe persistent asthmatic. I have a routine in the morning and evening where I take all of my medications and check the weather and air quality reports. Not all asthmatics have the same triggers and same reactions to various triggers. For me, drastic changes in weather can trigger my asthma quickly so I check weather reports several times throughout the day. Where I live in the Midwest there is a saying that goes “if you don't like the weather just wait 15 minutes.” We have some pretty wide swings with weather where I live.

When it comes to traveling, I will spend time researching the climate of the place we are visiting as well as the proximity of any local hospitals and pharmacies just in case I were to need them. My medication bag is almost as big as a small suitcase! As asthmatics, we have to plan for the unexpected. I never know if I am going to walk into a store or place that is going to have a trigger of a strong scent that will cause me to instantly go into a flare-up. There is so much more to asthma than just managing it with medications. We have to be proactive. If not, there can be life-threatening consequences.

Rebecca shared:

Asthma attacks can be terrifying, especially if an episode is uncontrollable, or if a rapid attack occurs. The hardest part – lack of air getting to the lungs – is absolutely frightening. When asthmatic, any little trigger can elicit a reaction. As the lungs react to a trigger – e.g. dust, pet dander, foods, or smoke– irritation and inflammation form in the bronchial tubes, muscles around the tubes tighten and restrict expansion, mucus builds up narrowing the passageways, and finally air cannot get into the lungs. Without appropriate treatment, this can be a life-threatening situation.

There are a few great metaphors depicting asthma to those not afflicted by this chronic illness. The best explanation I’ve heard is that of breathing through a very thin cocktail straw for 2 minutes. No matter how hard you struggle you just can’t bring in an adequate amount of air. Anxiety and panic set in, and air hunger begins. Another simile is to imagine wearing a very tight corset underneath a weighted, full-length gown. Because it wraps and binds the ribs restricting the lungs, full breaths are all but impossible to take in. It’s no wonder women from the 19th century fainted rather frequently.

The easiest way for me to explain the lack of air getting into the lungs is to think of a clogged vacuum cleaner. My 2 dogs layer my rugs and couch with hair after just a few days, especially in the springtime. My stick Dyson does fairly well sucking most of it up but becomes terribly clogged if not maintained. Canister full, the stick portion clogs, and finally the air filter thickened with dirt and dust – like inflammation and mucus – fails to allow in anymore air. It sputters and chokes up, lights flash to fix the clog, and then it stops working altogether. For the lungs to work properly, fix the clog and maintain the lungs, only possible with avoidance of triggers and with use of appropriate medication and therapies.

Ms. Al Veoli explained:

One of the hardest parts of living with asthma is how long it can take to recover from an episode. People without asthma think you can just use your inhaler and like magic, be able to breathe again. Sure, sometimes it is like that. But most of the time it’s much more serious. An asthma episode can take days, months, or even a year or more to recover from. Recovery requires more or new medications that can have unpleasant side effects. It means more trips to the doctor’s office for lung function testing. Our ability to do the smallest daily activities may be limited. The simple act of breathing can be exhausting and even painful after an episode. It’s very scary and frustrating. Please have patience and empathy, no matter how long the recovery takes.

Becky said:

Most people don’t need to think about their breathing; it just happens for them continuously throughout the day, no matter what they’re doing. Whether they’re meditating, exercising, sleeping, or doing other activities, their breathing automatically adjusts to that activity. For people with asthma, it’s different.

For someone whose asthma is not well controlled, they have to work hard every day to protect their breathing from whatever triggers they have – like a tiny but strong flame that has to be shielded from the elements. They have to ask questions every time they get invited to a friend’s house to gauge if it’s a good idea for them health-wise, and if they do go, they need to bring a rescue inhaler in case something goes wrong.

Although my asthma is well controlled with medication, protecting that level of control can take a lot of coordination and, sometimes, cost. When I’m without my long-acting inhaler for even a day, my breathing begins to go downhill, so I have to stay on top of refilling my meds on time and requesting additional refills from my healthcare provider. These meds can cost hundreds of dollars without insurance, and even with insurance, copays can range anywhere from $10 to $50 depending on provider and coverage.

Most of us who have asthma have experienced an asthma attack or an episode where our breathing was significantly impacted, so whether we’re on a well-controlled medication plan or not, our asthma maintenance is not something we can procrastinate on or put off until next week.

Pete responded with:

This question is weirdly anxiety-inducing just thinking about it, but it is one I feel I always need to answer and get the message across because if I do not, I fear that people will not have a proper understanding of how bad some situations can become, and how quickly. Some may not take asthma as seriously as they should. I also remember having anxiety about this as a kid. I think it is because people who didn't suffer from this condition just assumed as long as the asthma sufferer had their inhaler on them all was fine and dandy! And this can be dangerous thinking.

When I have been at my worst, my inhaler almost stopped being effective. Constant usage can be dangerous and is a sure sign of needing more medical attention. This was my experience anyway. Sure, it would give me some relief, but obviously, there was something wrong if half an hour went by and I needed to puff on my inhaler again without exerting any physical movements.

I think the hardest part of having asthma is explaining that very often the danger signs are not always when people are wheezing and coughing loudly – although this could obviously be dangerous too – but in my experience, the worst attacks are the “silent” ones. It's the attacks where I am sitting very still, and my shoulders are tense because I cannot get enough oxygen into my lungs. My breathing is short and rapid and strained. It is so scary. I'm not doing this justice but I hope the reader can get some sense of what I am trying to convey.

John shared his perspective:

To answer this question, we must first decide what the hardest part of having asthma is. I think the hardest part is explaining to people without asthma why you can’t do something.

For instance, my brothers want me to go to the cabin. And they are hoping I will spend the night so I can have a few drinks with them. So, I have to explain to them why I can’t spend the night. I explain that I am allergic to the dust mites and mold in the cabin. And these make me feel very miserable. And they say, “Oh, yeah, that makes sense.” And, while they are disappointed, they understand.

A year later they want you to go to the cabin again. And here I find myself explaining it all over again like they didn’t listen the first time. Over the years, I have realized that this type of experience happens with most people who do not have asthma. And I have decided since they do not have asthma, they forget. So, it’s not that they weren’t listening, it’s that they forgot. And I have decided not to hold this against them. I have learned that they do care, they will understand, and they just need a reminder from time to time.

So, how do you explain to someone without asthma that you can’t do something? You explain why you can’t do it, and they will understand. Yet don’t be upset when you have to explain it again if (when) they forget.

What about you?

Social pressures, extra planning, lack of asthma awareness and education of others, silent symptoms, and so many more hardest parts of asthma were brought to our attention by our advocate team. What would you say the hardest part about your asthma is, and how would you explain it to someone without asthma? Have you tried to have those conversations before? How did they go? Share your experience with us in the comments section.

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