I have been thinking about my conference presentation at the health humanities conference last week. I looked at the different things I communicated on my blog, as well as the deferent knowledges that I developed. I took these and proposed a set of patient health literacies. It occurs to me now, that what they really are is ePatient health literacies. Not all chronically/critically ill patients will develop these literacies, but most ePatients (empowered patients) will.
So, what are these literacies?
- Negotiating Identity. When I was diagnosed, the negotiation of identity was pretty clearly something that I struggled with. I found myself regularly reflecting on and blogging about how I saw myself. Even the subtitle for my blog “Never thought I’d want to identify as a breast cancer survivor…” is a statement of identity negotiating.
- Exploring Body Image Changes. Since the critical illness that triggered my blog was breast cancer, there was no way that body image wasn’t going to be a key theme in my blog posts. There isn’t much more outwardly facing view of femininity than ones breasts. I found it interesting that my body image was not at all what I expected it to be.
- Making Decisions. I blogged a lot about my decision making processes. This was in part to help me think through my decisions, but also so that I could communicate with my family about why I was making the decisions that I was. I also wanted to provide a means to help other breast cancer survivors make their decisions.
- Understanding Side Effects. Side effects were something that I was afraid of, but also something that I wanted to better understand. I was drawn to other people’s blogs in order to learn more about what the side effects really meant. It is one thing to hear about them in a doctor’s office when someone who has never had the disease explains them, and a whole other thing to hear about the side effects from someone who has actually experienced it.
- Developing Coping Mechanisms. Aligning with side effects, is what to do about them – coping mechanisms. This was not just about side effects. I spent a lot of time thinking developing and articulating coping mechanisms that helped me learn to live with breast cancer.
- Negotiating the Medical System. The US medical system was pretty foreign to me, but so was the entire medical system surrounding breast cancer. I had no experience with cancer – so it was all foreign to me (not just literally but figuratively as well). I was fortunately to have worked with the Department of Family Medicine at uOttawa – such that I had a sense for how medical education worked, and the different roles associated with different medical professionals (e.g. the difference between a medical student, resident, and fellow). My prior knowledge helped me a little, but I had a lot to learn about the system that I was now a consumer of.
One that I didn’t mention in the presentation, but I think is important if I am adding the empowered part, is that of advocacy – more specifically, advocating for oneself. I was also pretty good at being outspoken, but I learned a whole new level of self-advocacy throughout my cancer journey. The US system required that of me, in a way that is very different from how I think I would have needed to do it in the Canadian (or other socialized) healthcare system.
I believe that I as work my way through my blog again, tagging posts to themes, that I will likely find other themes that might align with literacies. I will also need to do a better job of articulating what they are and how my blog posts demonstrate the various knowledges.