When you hear your name and [insert scary diagnosis here] in the same sentence, you feel the tectonic plates of your life shift. It really does feel like an earthquake. The first thing you want to know is … EVERYTHING. What your treatment options are, what the possible outcomes and side effects of those treatments might be, how to decide what treatment is right for you.
Peer forums – online communities where people with the same interests gather for discussion – can be a blessing, or a curse, for someone with a fresh diagnosis of [whatever]. On the blessing side, you’ve got company. On the curse side, that “company” might have strong opinions on what you should do about your own condition based on their experience with that condition.
I had that very experience during my own cancer journey. After my diagnosis, surgery, and pathology report, I worked to gather information on treatment options for chemotherapy and radiation. My surgeon had referred me to an oncologist, with the initial consult a few weeks after that referral. In pursuit of “been there, done that” input, I created a profile on the dot-org site for my type of cancer, and started surfing the forums for information and insight.
Anyone with any time in on digital forums can probably guess what happened next. I found a few cogent, thoughtful correspondents. I also found a measurable metric ton of opinions – expressed at volume, in the ALL CAPS of online shouting – that seemed focused not on helping me make an informed decision about my own care, but on making sure that I had the exact same treatment experience that the all-caps shouter did. And there were many shouters, sadly.
After about ten days, I abandoned the forum, and the shouters. I had gotten a bit of useful intel from the thoughtful-correspondent crew, and used that to start building a decision checklist to use while working with my oncologist. During our first consult, we used a statistical modeling tool I had learned of from one of the not-shouting forum members to sketch out the long-term survival on a few chemotherapy regimens. Together, we talked through a selection, and eight years later, I’m still cancer-free.
What I learned from this experience is that you can most certainly find savvy peer mentors in online patient communities. However, you need to be aware that not every forum member will see their role as one of mentor. Find the calm voices, the ones that ask you about what your treatment goals are. That’s true for your clinical partners, too – thoughtful questions that lead to informed decisions are the way to go, in any setting.
In short, work to be as well informed as possible about your own body – improve your health literacy. And make sure the people you’re listening to and learning from in that process are bringing science-literate, evidence-based content into the conversations you’re having with them about your own medical condition(s). The life you save may be your own … Clarity is Power.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.