My asthma is a third of my age this year. At least for 3 weeks, anyways. Eight years ago today, I was handed a prescription for Ventolin by a walk in clinic doctor, at my second appointment with him where I adamantly refused his answer that I had “bronchitis” again.
I mean, had I been the same as I am now, I would have told him “That’s bullshit, this isn’t bronchitis,” but I wasn’t that patient yet. Although those were my first steps to becoming her—refusing the “authority” of a doctor who was about to misdiagnose me yet again.
The reality is, advocates aren’t born of perfect situations—if care were perfect, we wouldn’t have anything to advocate for. But in order to be effective advocates, we have to believe that our experiences matter, and that our stories can bring change. Advocacy is about creating something positive of the negative: it’s not reminding everybody about the shit we’ve been through constantly, it’s not about wanting to only share the injustices we’ve experienced, advocacy is not about the negative.
Advocacy is not just about me.
Advocacy is about wanting real change for ourselves and other patients. It is about the choices we can make to make our own situations better. Advocacy is about using our stories for good—finding the positive in the negative (and all that other flowery bullshit sounding stuff that is, you know, actually true)—if you don’t push through the shit, you don’t grow.
I’ve learned a lot in eight years. I’ve been places I’d never thought I’d go, and met people I never would have otherwise. Many of those things have nothing to do with asthma, but, would they have happened otherwise? I’ll never know. Eight years later, I know a few more answers, but I’ve got a thousand more questions. So, I’ll keep packing up all the inhalers I take—none of which are really new, and if they are, they’re not novel—and hitting the road. I’ve got hope that something better will come, but I’m not going to wait around 5, 6, 7 decades for it—I’ve got things to do now.
Sorry, science. I don’t believe you’ll cure asthma in my lifetime. And yep, I know pharma doesn’t have any interest in curing me anyways.
Prove me wrong, I dare ya.