Are You an Advocate? Musings on Asthma Advocacy
In my world, Asthma Awareness Month is just another month, where maybe three extra people are looking. I’ve been, whether intentionally or not, sharing my asthma story since about a year after my diagnosis. In one way or another, I’ve been participating in “grassroots" advocacy, before I even knew what advocacy meant, or before I’d even think of calling myself an advocate.
What is advocacy?
In fact, I intentionally resisted the term advocate for quite a while because I didn’t really feel like it fit me for just sharing my story. I wasn’t advocating in a political way—I wasn’t talking to politicians, or trying to push policy change for the "asthma agenda” (which makes things sound very organized!), or any of that sort of lobbying stuff.
This month, actually, the only thing that will differentiate May, Asthma Awareness Month, from any other month is that I will actually be on Parliament Hill for World Asthma Day, speaking with Canadian Members of Parliament about asthma. Nine years after my asthma diagnosis, eight years as a story-sharing ePatient advocate in, and this is the first I’ll be doing anything of the sort of advocacy I had in my head when I first read the term advocacy as it pertained to patients. Now, the sort of hill-type advocacy is the last thing on my mind when I think of advocacy.
Being an advocate is a choice, and what type of advocate you are is a very individual choice, too. Some people want to be very political about it—that’s not my jam, although I’m going to try it out I guess, but other people are out on the hill—be it Parliament or Capitol—regularly, fighting for the rights of people like them or their loved ones. That’s not the type of advocacy that I feel fits me, though maybe my mind will change (I am doubtful) and I’m okay with that.
What asthma advocacy means to me
My own type of advocacy is in storytelling. And yeah, it probably helps that I don’t have much of a filter and just about anything that happens in my life or in my brain somehow finds its way onto the internet. My kind of advocacy is in sharing my journey, my experiences, and having people reach out to me saying “me, too”.
One day back in 2013, I filmed a day with asthma for Asthma Awareness Month, and that video has somehow accumulated over twenty-three thousand views and more comments than any other video I’ve put up on YouTube. It’s in, when people connect with me about asthma, trying to connect them with others like them. It’s about creating change, sure, but it’s about the ripple effect: the fact that if I can reach one person and they can reach one person, that in the end, things will be better.
How I became an asthma advocate
Being an advocate or simply creating awareness is a choice—and there’s nothing at all wrong if it’s not your thing, no matter which way you slice the advocacy pie of options. While my storytelling “advocacy” journey didn’t start out intentionally, I do have to call it what it is.
My natural response to anything in my life is to write about it: and if storytelling makes me an advocate, then hey, that’s my style. And I didn’t have to get on a single plane or go to any sort of specific hill to do it. The best thing about advocacy is that it is the strongest when we bring our own personal strengths to what we are doing to promote change. Living my story, and sharing that story is my kind of advocacy. And it looks much the same in May as it does the other eleven months of the year.
Do you consider yourself an advocate? What’s your type of advocacy, and are you making a more intentional asthma advocacy effort in May for Asthma Awareness Month? Let me know in the comments.
Do you get muscle cramps caused by your asthma medicine?