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Breathless Conversations: Navigating Severe Asthma with The Asthma Runner
Breathless Conversations: Navigating Severe Asthma with The Asthma Runner
Blue Charm recently interviewed Josh Rheaume, also known as "The Asthma Runner" on Instagram. Josh, a Canadian living with severe asthma, emphasizes the significance of staying physically active. Through his marathon running journey, he aims to raise awareness about asthma and inspire others to lead fulfilling lives despite their condition. This conversation delves into Josh's lifelong struggles with severe asthma, his motivation to establish an Instagram platform for spreading awareness, and the relatability he seeks to offer to fellow sufferers.
Can you tell me about the early stages of being diagnosed with severe asthma and what your childhood looked like?
I was really young when I was diagnosed with severe asthma. It was pretty obvious as a baby that I had respiratory issues within a couple months of being born. However, I was officially diagnosed when I was able to do a spirometry test. Growing up, things were always really challenging for me, asthma defined my childhood. I could never play sports or venture out on my own. I spent upwards of 4 months of each year in the hospital from a young age until I graduated high school. Even in high school I was terrified to go anywhere because of the unknown of what could happen with my asthma. I tried my best, especially when I turned 16 and had my license to get out more, but I always felt more comfortable and safe at home. This caused many limitations in my life, unable to play sports or be social with friends. Even going on vacations was stressful for me because I didn’t know how the environment of a new place would affect my asthma. So, my asthma didn’t just impact myself but my family as well.
Did you ever feel like the healthcare system could have done more to help you and your family learn how to better manage your asthma?
Growing up I didn’t really have anyone helping me manage my asthma. Respiratory educators were not made available to me. Unfortunately, it always seemed that physicians were focused on medications versus what else could be done outside of that. Even with being diagnosed with severe asthma, I have never been referred to an asthma clinic.
Growing up we had farm animals, dogs, and cats, and we lived in an old house with a wood stove and I didn’t know these things were affecting me. I knew I had certain allergies but I didn’t realize how this could affect my asthma and my breathing. If I had that education, things could have been very different for me growing up. Just a couple of years ago, I was reminded how important it is to avoid certain triggers. I was at a friend’s camp for an hour and they had a wood stove, I ended up developing atypical pneumonia from it. This caused me to be very sick and it was a scary situation for me because I ran out of my rescue inhaler and didn’t have cell reception to call for help.
What challenges did you and your family face then and now (education, cost of medication/insurance coverage, access to healthcare, etc)?
I had a specialist in Halifax who recommended me to go on a biologic drug years ago when it had recently hit the market. Unfortunately at the time it was going to cost $2000 and our Blue Cross wouldn’t cover it. My mother was a single mom with 4 kids, we struggled to get by as it was and we couldn’t afford that cost, so I had to go without. Instead, I took the typical inhaler medication and was on prednisone multiple times per year which also comes with its side effects that causes other health issues. Had that biologic medication been covered, my life could have looked very different then and today.
At what point in your life did you discover how to have better control of your severe asthma? And what changes did you have to make?
A specialist recommended when I was 19 years old that it may be in my best interest to move away from Nova Scotia because he suggested it may be the humidity that was causing a lot of my problems. I decided to move to Ontario, and this turned out to be a great suggestion. It made me realize that where I lived geographically can either improve or hinder my asthma symptoms and in this case it improved. This was the first time I felt I was in control of my asthma, medications aside, this was the first thing that I was in control of to help myself. Moving drastically changed my asthma for the better, I still had to take my ICS inhaler, I always had Ventolin as needed and I still used nebulizers but I noticed my breathing was improving. Another huge change was getting out of our old house with all of the animals. That made me realize how much my living situation was impacting my asthma symptoms as well, and unfortunately I was never told by my Allergist, or Respirologist that those things could be triggering my asthma.
Having better control of my asthma has come at a cost of having to live away from my family and live differently. But since then, my health has always come first. If I go home to Nova Scotia I can’t stay for more than a few days, I have to stay in a hotel room but I have learned how to mitigate all of that.
What has life been like as an adult living with Severe Asthma?
One of the things that has been more recent is knowing that I can do cardiovascular exercise. I always lifted weights at the gym because I knew I could handle that but refrained from doing any cardio. I would abstain from going on any hikes, long walks or runs. I tried to play some sports but I had to keep things pretty low key because of my lungs since I could never go without taking my inhaler. I was starting to gain some weight and I noticed my capabilities were getting to be less and less. As I began to lose weight, I noticed my lungs were starting to get susceptible to some physician activity. Three and a half years ago I started running and what I was realizing is that lung conditioning is a thing. When I started, it was difficult. However, as time went on, I was able to run longer and use my inhaler less. It has taken time to condition my lungs, but my life has substantially changed because of it. I have two young babies at home and I want to be able to keep up with them and not have that limitation.
Did you ever feel growing up or in your adult life you struggled to find someone who could relate to what life experiences you were/are going through?
I still haven't found someone who can relate to me. There are a lot of people out there with asthma, but the severity of asthma comes in all different forms. It’s not just people around me, it’s also Healthcare Providers. I feel like I don’t have anyone or there aren’t any that are present at least in my life that are readily available to me who understands my lungs and what’s best for me.
Tell us about your Instagram page “The Asthma Runner”, what motivated you to create it, what keeps you motivated to continue to share your journey, what connections have you made in the industry and within the asthma community?
I wanted to be that person that someone could relate to because I never had that. If I had the information I have now at 33, I could have been doing things a lot differently much sooner. “The Asthma Runner” started when I went out to the track and I just started running. The first time out, I ran 100m and needed my inhaler, the next time out I went 200m before needing my inhaler, and as time went on I was able to run further and further without needing my inhaler. Like I said before, I had no idea that conditioning your lungs was a thing I could do. So that is why I created this instagram page, to help educate and inspire others to get out there and try something new and not sit back because they’re afraid to challenge themselves.
The instagram page has also been really great for blogging my journey and a way to keep my statistics. Each post I talk about my lungs and how I felt during my run and if I forget to bring my inhaler, I will be open about that too. Sometimes I forget it, and I am just fine, other times I need it and that is a good time to remind us all that we should always have it with us in case.
How do you feel Blue Charm aligns with the platform you are creating on Instagram?
I think my values align very well with Blue Charm’s. I really like that Blue Charm awards people for their surveys, and every survey filled out is going to be different because everyone’s situation is different. Knowing how each person has been affected and learning what has or hasn’t been available to them is the only way to discover the needs and wants of that population. Both of our platforms are trying to be advocates for people living with a chronic illness. I love the structure of Blue Charm and I stand by it 100%, I think rewarding people with money allows them to potentially either use that money for their medication, or even a gym membership, which is great.
If there is one message you could share with the entire Asthma population, what would it be?
Don’t let the limitations that others put on you define your true potential. I was told many times that I couldn’t do something (cardiovascular exercise) and I did it. I think defining your own limitations is important, and not to let other people do that for you.
What’s next for “The Asthma Runner”?
What I see achievable now is so much different than what I thought was achievable before. My goal is to qualify and run in the Boston Marathon. After that, I would love to write a book about my journey and how I got to that point from where I started. I completed my first marathon (42.2km), the Toronto Waterfront, in October 2023, in 5 hours and 23 minutes. That time won’t qualify me for the Boston Marathon, but my goal for my second marathon coming up in a couple weeks is to run it in 3 hours and 50 minutes. To qualify for the Boston Marathon at my age, I have to complete a marathon in 3 hours. So if I can shave off an hour and half within my 1st and 2nd marathon, I should be able to qualify within the next couple of years of training.
