The E in ePatient: Engagement
ePatient was a term that was brand new to me back in 2012 when I heard it for the first time. The E has many different words it can represent, according to Wikipedia. Most commonly, the E in ePatient (or e-patient) may be presumed to stand for electronic—as in, using electronic communications like the Web, to gather health information1. Equipped, empowered or expert are all words that are commonly associated with the E in E patient—and, in my opinion, engaged can often encompass all of these roles, too.
What does being an engaged patient look like? It depends on you. For me, I feel that engagement is part of the “you get what you give” scenario that encompasses most of our lives—the more we push ourselves and put ourselves out there, the more experiences we gain and the more perspectives we are exposed to—we gain more by giving more of ourselves. I believe that this sort of engagement should not stop at my asthma management. Sometimes, I’ll admit, I’ve felt that I’ve put a lot of work in to getting my asthma to an acceptable level of control, and I’ve been frustrated by this. But, if I hadn’t tried, I wouldn’t have gotten to where I am. Sometimes, there are no more realistic answers your doctor can give you—sometimes, there are no more realistic answers any doctor can give you. But, you’ll never know until you engage and invest yourself in that process—however, it is extremely important to take a break when you need to, to avoid burning out.
Engagement in my world looks like keeping tabs on what’s going on in the asthma world. it means gaining a good understanding of my own asthma, the type of asthma I have, my triggers, and the impact of different things I do on my asthma. Electronic media—that other E!—is super important, as it helps me to keep up to speed on what’s developing in asthma, so that I can have a conversation with my doctors about whether or not a new treatment might be an option for me. Engagement means educating others on my asthma where I can, and self-advocating. It means being active, not passive, in dealing with my asthma. My doctor may have gone to medical school, but they do not know my body as well as I do! I approach my doctors with—most of the time, anyways—a willingness to collaborate with them, and hope that they’ll give their input and expertise but also allow me to be in charge of what I think needs to be done, or educate me if needed on why a change shouldn’t be made or should be made differently. Just like with self-advocacy, being an engaged patient does not mean being a jerk to your doctor or anybody else—it means knowing your options, being an active participant in exploring them, and putting in the effort. Helping you is your doctor’s job, absolutely, but they can only help you as much as you choose to dive in and help yourself and be in control of your circumstances.
For me, part of being an engaged patient is being involved on social media, and being available to support others and answer questions. As a non medical professional, I also always ensure that people are aware that I can tell them what’s worked for me, what I’ve heard has worked for others, and what I’ve read, but that they should never make any sort of changes based on what I am telling them (just like is true of any actual medical professional you interact with on the Web). My lungs are not theirs, and just because I’ve made a choice independent of my doctor and it’s worked (or I’ve dealt with the consequences!) doesn’t mean that’s a good idea!
There’s no road map for living with a chronic disease, like asthma—but being an ePatient, for me, is the closest I’ve got. I follow the news about asthma, I share it, and I love connecting with others who have asthma and want to take more control, engage more, in their own healthcare. I am not perfect, and I understand how hard it is to be the “perfect patient”—it’s an impossibility for 99.9% of us (and I haven’t met the other 0.1% if they exist!). Engagement is what helps me find the right path—connecting with those I meet along the way, and making the right choices… and finding an alternate route when I’ve made the wrong one.
Have you ever gotten "moon face" as a side effect of prednisone?