Putting a face on severe asthma

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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 asthma exacerbations or depressing hospital photos here, just spontaneous, mundane bits of me going about my daily routine, and rambling at the camera lens for 17 minutes. The only real difference in my day, is that everything in it revolves around my asthma and my breathing.

In thinking about asthma awareness month and why promoting public awareness about this disease is so important, personal events over the past few months kinda brought it all home for me.. Simply put, asthma is an invisible disease. It’s difficult to get serious about something you can’t see.

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, you’re 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.
The public is told , mostly by the drug companies, that asthma is a controllable disease and that all you have to do is follow a 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.

If you want to have an honest public discussion about asthma, you need to talk about ALL aspects of it. Not only about novel disease conquering treatments and medications, but also the torment and despair of those whose living day to day with this debilitating disease, or those who’s bodies have been ravaged from the steroids they need in order to keep breathing, or the 3500 souls who suffocate to death each year in the US alone because of this invisible disease . You need to talk about all it in order to make it less invisible.

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