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Why Asthma Isn't 'Just Asthma'

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In the past year and a half, almost two years, now my goal has been to educate and bring to light that asthma isn’t “just asthma,” as you hear people so often say when talking about the condition or even how it’s portrayed in mainstream media. It isn’t just a childhood disease that eventually goes away with little to no consequence to the person suffering from the condition.

Now, don’t get me wrong. In some cases, yes, people with asthma can experience an extremely mild form, to the point you may not even notice symptoms in yourself or in a family member that has a diagnosis. This is very common and is the exact reason there is such an “it’s not that bad” stigma around the disease. It is still essential to keep in mind that asthma, even in its more mild presentations, is considered a chronic respiratory condition and is classed as a chronic illness. Even people whose symptoms are considered under control or are even in remission of symptoms (not experiencing symptoms) can have a sudden asthma exacerbation that sends them to the emergency department.

When I was first diagnosed with asthma, I was nine. I was a very active nine-year-old, loved running around and playing, and was also involved in soccer as an extracurricular activity. I was diagnosed with sports asthma, a very mild form of asthma that only affects a person when exercising. That fit what I was experiencing almost perfectly. I experienced shortness of breath and difficulty breathing most consistently after running or being active. I also experienced it when I was around smoke, in very humid environments, and in cities with high levels of air pollution — for example, Toronto. My doctor prescribed me a Ventolin inhaler and sent me on my way. The Ventolin was beneficial and helped alleviate my symptoms 95% of the time.

From the ages nine to 12, I had very minimal but significant changes in my symptoms. My family and I were under the impression, like most people, that it was just asthma and it was nothing too serious. I would grow out of it and be fine. My aunt had asthma as a child and grew out of it no problem. I didn’t even have traditional asthma (or so we thought). I had sports asthma.

As a result of my family’s understanding of asthma, we ignored other symptoms that started to occur. Smoke began to bother my lungs more, sending me into coughing fits, eventually ending with me gasping for air. My mild symptoms that occurred with exercise were getting worse. It took me longer and longer to recover, and the lingering effect of feeling like I couldn’t breathe persisted hours after exercise, even with my inhaler. Colds would knock me out for weeks longer than other kids my age, and I started experiencing symptoms at night and during the day even without being around a known trigger.

All of this led to that fateful day a few weeks after my 12th birthday when my journey and struggle with this disease truly began. I ended up collapsing at school with severe breathing problems. I was rushed to my cities children’s hospital, where I was later diagnosed with what we consider to be traditional asthma. I was referred to the asthma clinic, where my diagnosis was confirmed with pulmonary function testing (PFT). I was started on an inhaler called Symbicort to manage my symptoms long term.

Even with the new developments in my condition, I still thought that it was just asthma. I truly believed it would be a temporary problem I lived with for a short amount of time. Everyone, including medical professionals, told my parents and me that “there is no need for concern … most kids grow out of it. She’ll grow out of it.” All of these conversations reinforced in my mind that my life would eventually go back to normal.

Unfortunately, I never grew out of it. My condition from that point on only continued to worsen, not improve like we were told it would. The long process of trying different medications began. I was being put on and taken off of medicine at every appointment with my pulmonary specialist, which happened monthly. We tried different inhalers and doses. Nothing that we tried ever controlled my asthma enough for me to be considered anywhere near stable. My condition continued to decline as we were fighting this uphill battle and losing. I had everything from allergy testing to testing for other lung conditions and diseases, anything genetic that could cause my asthma to be so untreatable and severe. Nothing ever showed up.

Emergency department visits and hospital stays became a frequent and regular part of my life. Medical trauma also started to become a problem for me. I would come into the hospital in such critical condition that we never knew if I would come out of the hospital. I never knew if I would pull through. I constantly had thoughts about if I had an asthma attack, would it be my last? Would the ambulance get to me in time? Would the doctors be able to save me this time? I was continually anxious about my asthma and dying. I had nightmares about going into the hospital and dying. Asthma took over my life, stole my childhood and took my identity before I even really knew who I was. I was no longer a child, a student, a friend, or a daughter. I was a patient. I went from doctors appointment to doctors appointment, hospital stay to hospital stay. I made medical decision after medical decision. Medical professionals still kept telling me I would grow out of it and how even if I didn’t, it wouldn’t always be this way. My doctors put me on medications thats benefit outweighed whatever risk there was, and because I was under the age of sixteen, a lot of these corticosteroid medications had a lot of risks.

People would ask where I was when I was gone for a week or two because I was in the hospital. When my parents or I would tell them, “I had an asthma attack, and I had to be hospitalized again.” They would look at us like we had grown two heads and without fail almost every time say. “Oh well, it’s just asthma. You’ll grow out of it.” No one understood that just asthma had nearly taken my life multiple times and that it had robbed me of the rest of my childhood. They didn’t see how poor my quality of life was because I appeared so healthy on the outside. No one saw me struggling.

Even my parents acted like I was overreacting and being dramatic, sometimes to the point they assumed I was faking it all. The effect of the disease and everything surrounding the condition had a significantly negative impact on my mental health, and the stigma did not help. The stigma encouraged people to say I was faking it, or being overdramatic, or even going as far as saying it has to be anxiety. “I’ve never heard of asthma being so severe.” I’ve had people look me dead in the eye and say, “Stop exaggerating. It isn’t that bad. So many people have it worse. At least you don’t have cancer.” My struggles were brushed off and labelled as me being a dramatic teenage girl, and my symptoms were dismissed. I felt like a horrible person because they were right. I didn’t have cancer. I had asthma, and asthma is not that bad. It was a thought I constantly had. It’s a thought I still have to this day.

Eventually, after continuing not to improve, the theory came around that maybe puberty was causing my asthma to be so severe. It was pretty common in females that they would almost grow into asthma because of the hormones associated with puberty — the timeline fit. I had my first severe asthma attack at 12 after my first few periods. I was now being told that my lungs would stabilize or the asthma would go away once I was through puberty. Once again, I believed what they told me.

This idea that puberty was causing all of my problems brought me hope. It made me believe that there was a light at the end of this seemingly never-ending tunnel. My condition did stabilize for about a year. My medications were working better. When I did have attacks, I responded to emergency medication better than I had in the past. My asthma still never presented as “normal” asthma, but I was so hopeful that this was a sign that the doctors finally had it right. My hope ended up being crushed again when I went into severe sudden onset respiratory failure at 16 because of my asthma and had to be intubated and placed in the intensive care unit for five days. Once again, after this hospital visit, my condition was no longer stable, and my asthma returned to being completely uncontrolled.

Puberty came and went; my asthma stuck around and continued down its path of becoming more severe. My pulmonary specialist didn’t know what else to do with me. So I stayed on the same medications and dealt with exacerbations and hospital stays as they came. I came to accept that this was just how my life was going to be. I accepted that if I had an asthma attack, it could be my last. I came to terms with the fact that I was most likely going to die young and that my asthma would be the cause one way or another.

I was miserable, tired, utterly defeated, and terrified every breath would be my last. Asthma ruled my life, and if it wasn’t my asthma directly deciding my every move, it was the fear of having an asthma attack. I couldn’t stay more than 15 minutes from a hospital in any city or town I was in. I had to be close so that I could get there just in case. If the town only had urgent care, I wouldn’t stay there. If I was further than 15 minutes from a hospital, I had severe anxiety and even panic attacks. I also developed a fear that I would have an asthma attack, and no one would believe me, and I would end up dying as a result. People, the general public and even doctors not believing me had happened before. I was afraid of every aspect of life.

When I turned 18, I transferred from the children’s hospital asthma clinic to an adult asthma clinic. I had a new doctor, but I didn’t believe anything would be different. My new pulmonary specialist ran tests I hadn’t had before to check for eosinophils, a type of white blood cell that is usually the cause of severe persistent asthma in adolescents and adults. I didn’t have any known allergies, so the hope that eosinophils would be found in my blood wasn’t very high since eosinophils typically present in allergic asthma, which we determined I did not have due to the lack of allergies. The thought of getting another normal test didn’t phase me though, just the fact we were trying something else, testing for something else made me feel heard. My doctor was finally listening to me. He didn’t tell me once that it’s just asthma. He heard me; he listened. He was the first person to say that everything I was experiencing was normal to experience when asthma was as severe and uncontrolled as mine. He promised me we would do everything we could, and we did.

As we expected, my eosinophil count came back extremely low or below zero. My eosinophil counts ruled out that subtype of asthma. I was put on some different combinations of medication that were more effective than what I was previously on. My condition didn’t improve and worsened slightly but eventually came to a plateau. I was still in and out of the hospital and on more corticosteroid than all doctors would like, which was a clear sign I was still uncontrolled, but with my condition plateauing at that severity, we could start coming up with some action plans.

My pulmonary specialist sent me to one of his colleagues for a consult to be sure he hadn’t missed something. I saw the pulmonary specialist for the consult, and she put me on another inhaler because she believed I wasn’t on a high enough dose of long-acting steroid. We started talking about a specific class of drugs called a biologic. Biologics are used to treat a wide variety of immune driven diseases. In asthmatics, it is typically used to treat eosinophilic asthma. We already knew I didn’t have many if any, eosinophils in my blood. Still, she believed that despite that, that kind of drug may be beneficial and that she and my other pulmonary specialist were involved in running a lot of clinical trials for these kinds of drugs. My asthma was severe enough that I would qualify with my oral corticosteroid use and hospital admissions alone.

I ended up in a clinical trial where the drug had already been tested, and they were testing the best device to inject the medication. The biologic in this trial greatly improved my quality of life and my health in general. I went from being in the hospital weekly to only going in every few months, and my inhalers started to work and control my daily symptoms more effectively than they ever have in the past. When this trial ended, I didn’t receive any biologic for six months. In those six months, my asthma reverted to where it was before I started the injection. It was a clear sign that biologic medications combined with my regular maintenance inhalers made my asthma more controllable, increasing my quality of life.

I was approved for a patient program that provides the biologic I am now on for patients with severe asthma. I have been on this biologic called Fasenra for about six months, and once again, my asthma symptoms have improved, and I am in the hospital once or twice every few months. I am so thankful that I had doctors listen to me, my concerns and most importantly, believe me. In my case and many others, it isn’t just asthma. It’s asthma, a chronic illness that is serious, life-threatening, and life-changing. Dismissing the severity of this disease by saying it is just asthma can put people with asthma at risk and undermine their struggles.

To this day, I still struggle with the fear of not being believed or having my asthma brushed off as just asthma. I still walk into the emergency department and question if these medical professionals will believe me and treat me or tell me asthma doesn’t usually present this way. Take a pill for anxiety and work on calming down. I still face the general stigma online when educating people on what else asthma can look like, and I see other people facing the same problems.

Asthma can look like your coworker, friend, or loved one needing to take a little blue puffer so inconsistently that you forget they even have asthma. It can also look like your coworker, friend, or loved one having to take four puffers every day and still end up in critical condition because they caught a cold or swallowed the wrong way ending in a coughing fit and a trip to the emergency room. No matter how severe or how mild you may think it is or how mild or severe your asthma is. Asthma is asthma and should be treated as the chronic pulmonary disease it is. Everyone’s experience with their chronic illnesses is different. Everyone who has asthma has a different experience. Whether it is asthma or something else, no one’s journey or struggle with their disease should have it diminished by someone telling you it’s just insert illness here. Listen to those around you opening up about their struggle with whatever illness they have, understand and support, and if you relate, offer any advice that may have worked for you.

The narrative needs to change. No chronic illness is just that illness. You wouldn’t tell someone with cancer that it’s just cancer. That illness could be that persons entire reality.

My trauma because of this disease will most likely never wholly resolve that is the reality of chronic illnesses. Medical trauma exists and persists as long as your condition does. I hope that I and all of us in this community can help each other cope and get through the never-ending maze that is dealing with being sick. If I can give one person the guidance I did not have, my journey will be worth it.

People with illnesses, visible or invisible, deserve to be heard and listened to. All people struggling deserve to be treated with the same amount of compassion.

Asthma is asthma. Let’s change the narrative and help educate instead of hinder.

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Originally published: May 17, 2021
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