When you think of asthma, you may picture a kid who suddenly has difficulty breathing after playing soccer with their friends or an adult who becomes winded after climbing a flight of stairs. But the truth is, asthma can look different in every one of the
Asthma is the
It’s entirely possible for people living with asthma to lead healthy, happy lives. But it’s also true that they may regularly be reminded of this condition, whether it’s because they must take daily treatments, they have an asthma attack, or they find themselves in a hospital’s emergency department needing medical attention.
Living with a chronic condition such as asthma can affect nearly all aspects of your life, from your physical health to your relationships to your mental and emotional well-being.
We set out to learn what it’s really like to live with asthma. We wanted to discover what people who have asthma have in common — and what their differences in experiences are like.
We asked four individuals to share their stories. These people are of different ages, backgrounds, and experiences. One is also the caregiver of a child with asthma. They come from the United States and from Ireland. None of their stories are the same.
We asked these people to share the misconceptions they’ve faced about asthma, what makes their asthma worse, and what they wish people knew about the condition.
We also asked about the importance of understanding how asthma can affect a person’s mental health. A
These are their stories, in their own words.
Editor’s note: These interviews have been edited for length and clarity.
Monique Cooper: As a mother of a child with severe asthma and also having asthma myself, I wish people would understand the seriousness of this disease. It is nothing to overlook and assume a person with asthma will always be OK. This illness can spark with so many triggers.
Darren Riley: I wish people understood the significance of environmental factors and how they impact people with asthma. Our environment not only influences the chances of developing the disease, but also, an unhealthy environment makes it more difficult for someone to manage asthma symptoms.
We often place a significant responsibility on the person with asthma to control their disease. But instead, we need to shift the narrative to the realization that we need to do more to mitigate environmental risks, such as climate change and air pollution.
Rachel Murray: People have this idea that asthma is not a serious condition. In films and TV, it is always this nerdy type of character who struggles with their breathing. A puff of the inhaler, and they are all better.
That is not the case for someone with severe or brittle asthma. I end up at the doctor and in hospital multiple times a year. I take four inhalers daily. I have to nebulise an inhaled treatment every day, sometimes up to four times a day, and I take oral medications all to keep my airways open. Every day, I have to clear my lungs to ensure sticky mucus doesn’t build up and cause infections for me.
It is a very complicated and life threatening disease that varies from person to person, but it has been painted as a mild disease. Society does not understand how debilitating it can be.
Javan Allison: The most challenging part of living with asthma is having to stay on top of my medications on a daily basis and also staying away from what would trigger an asthma attack. I play sports, so if I’m not taking precautions with my health, that can affect me.
Riley: The unpredictable nature of my triggers is the most challenging part of living with this disease. Having asthma is something that will always hold space in my mind — there is a subtle stress and anxiety to it. I often deal with this stress by doing my best to stay present and appreciate the times when I feel healthy and can take quality breaths.
Murray: Missing out is the hardest part of living with asthma. I have had to cancel or not attend so many family events, dinner dates with friends, or nights out because of my asthma. It was very hard for a number of years because I put so much pressure on myself. I was so worried my friends or family would be annoyed.
I think since setting up my asthma page on Instagram, people have become more understanding. For a long time, I had this idea my friends or family thought I was just saying I felt unwell or wasn’t up to doing something because I didn’t want to. That wasn’t the case, though. Sometimes, I have to pick and plan what I will do because I know every few weeks, my asthma will go downhill, and I can’t go to work, let alone socialise. That’s really hard for me.
“The ‘invisible’ aspect is hard to understand. I can’t show my lungs or my insides to people, so it doesn’t allow most people to understand what I battle every day.” — Rachel Murray
I generally look “OK,” too. I don’t look like whatever image people have of “sick” unless I have an infection or I am in the middle of an attack, which makes it difficult.
The “invisible” aspect is hard to understand. I can’t show my lungs or my insides to people, so it doesn’t allow most people to understand what I battle every day. I find work tough trying to pace myself and keep my symptoms “manageable.”
Dealing with so many medical appointments is draining, and ensuring I have that aspect of my life organised is demanding and requires a huge commitment. It is nearly a full-time job because I have so many appointments with different departments. It is hard to manage it all.
Allison: My triggers are what I’m allergic to, such as dog dander, mold, dust, grass, some trees, pollen, corn, eggs, nuts, and more. The steps I take to manage my triggers are to watch what I eat and read the ingredients. I take my inhaler twice a day. Every 2 weeks, I get a shot to prevent flare-ups.
Riley: Majority of the time, my asthma is triggered by changes in temperature. Since my triggers are more environmental, I have to manage through proactive medication and adapting my activities daily to adjust for unexpected triggers.
Murray: I find it very hard to identify my triggers. I don’t have allergic asthma, and I don’t have eosinophilic asthma, which is high levels of white blood cells in the airways of the lungs. No one knows what causes my severe attacks. I seem to get infections or asthma flares every 6 to 8 weeks without fail, and we don’t know why.
Cooper: This condition puts a strain on mental health for both of us. I‘m always worrying about Javan living as a normal kid, being around things that can trigger his asthma. It can be stressful because we never know when that day will hit us.
Back in 2018, Javan almost lost his life because of asthma. He woke up one morning coughing to the point he could not talk. He asked for help by writing “help me” in a fogged mirror while I was in the shower. We finally made it to the hospital, and there he was admitted to ICU for a week. That was the scariest moment for us.
So to prevent the stress that it can bring us, I just make sure we do what the doctors say and take all he needs to take to prevent any triggers.
“The mental stress of facing environments triggers I cannot control often makes me feel powerless.” — Darren Riley
Riley: I often feel that if I am having an asthma attack, it’s my fault for exposing myself or not taking all the treatments possible. The mental stress of facing environmental triggers I cannot control often makes me feel powerless.
On a positive note, this feeling of powerlessness is what inspired the founding of my company, JustAir. By bringing more awareness and more localized data around our breathing environment, I hope we can begin to see that we can express our agency and influence to make our communities healthier breathing spaces for everyone.
Murray: It definitely takes a toll on me. I try and stay as positive as I can, but it is hard when some days you are confined to bed or you can’t do something simple, such as walk up steps. A chronic and invisible illness takes so much away from you.
If I am bed-bound and feel up to it, I try and watch TV or read. I speak to friends on the phone, which always keeps me sane. When I slowly start to recover, I love someone driving me to our local beach for fresh sea air, sitting in the car with the windows down to clear my head.
I am not afraid of having attacks because I am responsible and always ensure I have my reliever medication, and I know when to attend A&E [emergency department]. It is more so that I feel extreme guilt for missing events, having my family leave work, or if I can’t attend work because I am unwell.
Cooper: Support is very important. Our family is our biggest support, but the additional support we get is from our followers. Letting the world in on Javan’s health has tremendously helped. His doctors keep up with Javan’s health that way as well.
Riley: It is very important. I do not tend to turn to others for my support, but I try to practice mindfulness to calm myself in stressful situations, particularly when facing an asthmatic episode.
Murray: Support is so vital for me. My friends and family are great; they really understand how hard it can be for me on a day-to-day basis and if I am experiencing a flare or infection. The community I have met online through my Instagram page has been life changing for me as well.
With my illness, I encounter symptoms every day that would put a normal person on bed rest. I have been able to connect with people, make friends, and speak to people who know how I feel living with a chronic illness 24/7.
If I can help one other person online, that makes my day because I feel less alone. I wish I had that growing up, someone to speak to and reassure me.