Breathin Stephen: An Interview
If you follow asthma blogs, you have probably heard of Breathin Stephen. Stephen has been blogging about his asthma for over 15 years at breathinstephen.com. Over time, he has shared his experience as a severe asthmatic, marathon walker, retired respiratory therapist, health advocate, and more. He kindly took the time to sit down with us for a virtual interview, and this is what he would like to share with you!
Our interview with Breathin Stephen
What made you decide to start an asthma blog?
Breathin Stephen: When I first started blogging, it wasn’t really about asthma. My blog was called Bay City Walker. I started it to chronicle my journey in to fitness walking. I was trying to see if daily exercise would have an impact on my disease. At the time I had to retire from my job as a respiratory therapist because my asthma was so severe I couldn't work. I had a lot of time on my hands, so I thought I would try to experiment with fitness and blog about it.
I started walking from my house to the grocery store--0.75 miles--just to see if I could do it. I figured I might as well start taking notes. Finally, I thought I should put it on the internet--since that was becoming a thing at the time. The blog was born.
As my endurance improved and my confidence grew, I decided to set a crazy goal of walking a marathon distance of 26.2 miles. In just over one year and with a lung function of only ⅓ of what's normal, I did what some of my doctors said was impossible: I reached my goal and completed my first full marathon! The fact that I was able to pull it off given the severity of my disease, gave me even more to write about.
I didn’t really have an audience at first, so I did it for myself and for others I knew personally who were struggling with asthma. That’s how the whole blog thing started. By the way, In the 8 years that followed, I went on to complete 12 half marathons and 8 more full marathons, including the Boston 3 times.
So how did your blog pivot from fitness to asthma?
Breathin Stephen: It took about 3-4 years before my blog became more about my asthma than my fitness achievements. You can see the trend of it becoming more sports-like to disease-like over time. I would be training for a race and get sick, and I'd write that I had to go to the ER and ended up in the hospital or whatever. People zeroed in on that and wanted to know more about my asthma.
I noticed that people were especially interested in the gory stuff, like hospital photos, or me being zonked out on a ventilator, or me suctioning myself--that type of stuff. So that’s what I shared. Spending a lot of time in the hospital was totally normal for me, but apparently blogging about one’s illness so intimately was new to the internet.
What is the most surprising thing you’ve learned on your asthma blogging journey?
Breathin Stephen: That we haven’t come that far yet with this disease. I’m 66 years old and I've had this disease since day 1. It hasn’t always been as severe as it is now, but having lived this long and worked in the field as an RT, I'm really disappointed that we’re not further along in the treatment of severe asthma.
While there have been major advancements in the treatment and understanding of the milder forms of asthma, little has changed in the treatment of severe asthma. Yes, there are new biologic drugs, but these drugs are extremely expensive, are not easily accessible to those who need them the most--like poor people and people of color--and are targeted specifically to those with eosinophilic or Th2 high disease, which affects less than 50% of the severe asthma population.1 We essentially have the same treatment arsenal for severe asthma now (bronchodilators and steroids) that we did 50 years ago.
When I talk to people with asthma, my message to them is that they need to get involved. You need to participate in order to see changes - you really have to get involved! It’s getting better, but still.
What do you think are some of the most meaningful ways to get involved with asthma advocacy?
Breathin Stephen: Consider volunteering for a clinical drug trial or perhaps a research program if you can. Without people participating in scientific studies, it’s harder for companies to create new treatments.
I also encourage people to advocate for themselves. For some reason, many asthmatics tend to be either embarrassed by their disease or not taken seriously. They often feel that their care providers are dismissive of just how bad asthma can get and how it affects their lives. After all, “It's just asthma.” That notion has to change. I encourage people to take charge, stand up for yourself, study the disease from every conceivable angle. Learn all you can so that you know what you’re talking about and can help make progress.
The public perception of severe asthma is very different from what asthma actually is. There are things I want them to know: that one size doesn’t fit all. There are many types and severities of asthma, which impact people in different ways.
A lot of what you see on social media is candy-coated. The notion that if you are compliant and take your medications as prescribed that everything will be dandy is not always the case. For the most part that’s true, but there many out there, who despite doing everything they can to control their asthma, suffer horribly every day. Not only from their asthma, but from the potent medications they have to take to stay alive. Every aspect of their lives is impacted in some way by the burden of their disease.2 Those are the things I touch on my blog because you won’t see those things in the media.
What advice would you give to others with severe asthma?
Breathin Stephen: Severe asthma has a huge effect on people, with struggling to breathe 24/7 and everything that comes along with taking these hardcore medications.2 I know so many people whose lives have been changed. Some people’s doctors give up on them. It’s not even the doctors’ fault all the time - they just may have nothing else they can do for their patients.
You can maintain a level of normalcy. I’m an example of that - no one thought I’d live past my forties, but I’m 66 now. It’s because I did something to make myself better. I exercise, I blog to help with my stress, I’m actively involved in research projects (I’m in my 13th year of SARP). So I would say don’t give in to the negativity. Your life will never be perfect, but you can certainly make it better.
Have you ever gotten "moon face" as a side effect of prednisone?