Putting a face on severe asthma

May is asthma awareness month, so I thought it would be fitting to share with you a 6 hour slice of a typical morning in this asthmatics life. No near-fatal exacerbations or depressing hospital photos this time around, just spontaneous mundane bits of me going about my daily routine, and rambling at the camera lens for 17 minutes. The only real difference between my day, and someone with healthy lungs, is that everything in it revolves around my asthma and my breathing.

In thinking about asthma awareness month and why promoting public awareness about a disease, which is so prevalent, is so important, I’m reminded of personal events over the past few months that really opened my eyes to this. Simply put, asthma is an invisible disease. It’s difficult to get serious about a condition that’s invisible and that only kills a few thousand people a year locally.

Back in Nov of last year I sustained a very common injury to both of my knees. When I would go out in public I could tell in people faces that my injuries, and hence my mobility problems, stood out like a sore thumb. How could they not? The limping, the use of crutches and braces to get around, people noticed because they literally have to get out of my way, some were even sympathetic. That’s when it dawned on me, while they see me limping around the store, they don’t realize I’m secretly suffocating as well. Unless, I went into sudden severe bronchospasm, started gasping for air, turned blue, then hunched over and took multiple hits off my inhaler or jabbed myself in the leg with an epi-pen, people wouldn’t have a clue that my real problem is my lungs not my knees. Unless you have a sign on your back, your asthma, and everything you’ve been through because of it, is pretty much invisible to the outside world.

Im not even sure that being invisible is a bad thing. Most of the time I don’t want strangers to know about my breathing issues anyway because I don’t want them to feel bad or sorry for me . Like most asthmatics, I’m even embarrassed to use my inhaler or neb in public. (How messed up it that?). What I really want the public to know is how bad asthma can get and how much suffering it causes and how it can turn peoples live upside down.

The public is told, mostly by the drug companies, that asthma is a controllable disease and that all you have to do is follow some kind of plan and take your meds as prescribed. While that’s true for the vast majority who have milder asthma, it’s make believe to the rest of us.
Yup, there’s a subset of asthmatics, albeit a small percentage, who’s asthma is so severe that no matter how well they follow the “rules”, never gain control of their symptoms, and which often leads to permanent and irreversible lung damage. You rarely here about this group.

If you want to bring about awareness and have an honest discussion about asthma, you need to talk about ALL aspects of it. Not just the lucky ones who are doing well because of novel new treatments, or access to good healthcare. You need to talk about those who for whatever reason, suffer from seemly endless exacerbations, or those who’s bodies have been addicted and ravaged by the steroids they have to take in order to keep breathing. You need to talk about all of these things if you want to make this disease less invisible. With so many afflicted( an estimated 250,000,000 worldwide, mostly children and older adults), asthma needs to rank in importance up there with diabetes and cancer.

Without further adieu, here’s a typical morning for me……….