I’ve been thinking about the online patient community a lot lately. When I first started blogging a few years ago, I was in such a different place. Not only was I completely new to the concept of the medical blogoshpere (I was just a girl sitting in office hours who decided to start a blog), but I was quite new to many of my diagnoses, namely primary ciliary dyskinesia, bronchiectasis, and celiac. I was also in the middle of acute adrenal failure.
As I wrote in Life Disrupted, it wasn’t that getting labels suddenly meant I was “sick.” Certainly the twenty-three years, numerous surgeries, and months in the hospital that made up my medical history did that. Rather, the correct labels now meant the descriptions of my illnesses finally matched my experiences.
I had a lot to learn about my conditions, my treatment plans, and most of all, how I wanted to mesh what I needed to do for optimal health with my professional and personal goals. I learned a lot from my new doctors, from my own research, and from other patient bloggers. Each source provided a different type of information, from clinical summaries of prognoses and data points to personal, anecdotal wisdom from those living with the treatments and side effects every day.
I often write how much I believe the universal experiences of illness far outweigh the disease-specific symptoms: getting a diagnosis, finding a compatible doctor, struggling with employment or personal relationships, navigating the process of acceptance, etc. Based on the variety of different patient and disease blogs I keep up with, I am further convinced of this.
But there’s something else I’ve gained from reading and processing other peoples’ disparate stories: I think I am less judgmental than I used to be.
It’s easy to think your reaction to a diagnosis, your treatment plan, or you feelings about particular procedures or practices are the “right” ones if they are all you know or think about. Sometimes the differences are smaller, like maintaining a gluten-free lifestyle by choosing only naturally gluten-free foods versus learning how to bake gluten-free equivalents of “regular” food, inhaling a certain kind of saline in a nebulizer over another, or choosing one type of specialist to handle a condition versus another.
Sometimes they are more profoundly life-changing, like deciding to try an experimental procedure, putting a name on a transplant, or deciding which way a family is going to bring a child into the fold.
Regardless of the enormity of the decision, having access to so many interpretations and points of view has reinforced to me how important is to see things from many angles, to respect that what works for me might not work for someone else and vice versa, and to understand that we don’t always have to agree with other people say, do, or write, but that’s okay—it’s not always our call to make.
When you write things and post them publicly, you sign up for discussion and sometimes disagreement—that’s what makes blogging so dynamic, and what makes it a conversation, not a monologue.
But sometimes, in the offline world of the healthy that each of us spends so much time in, I want something different. I don’t always want a conversation, or debate, or input that becomes static in my brain. When I’ve done the research and had the talks and made a decision about my life or my health, I don’t want to have to explain or justify or defend.
Sometimes, I just want the act of listening to happen. And hopefully with listening will come understanding, but I’ll take just the listening for a start.
Does that make me a hypocrite? It might, and I accept that.
Every now and then, I wish there was a way to easily moderate the comments that happen in real-time…what I really want to say is trust me.