When I speak with new cancer patients, I always remind them to be authentic with their feelings. If you feel like a warrior, let loose the battle cry; if you feel like the victim, sob fiercely into the belly of your cat; if you feel angry, shout it out; if you feel frightened, reach out to the closest warm body for that hug. Whatever the emotion, just allow yourself to feel what you need to feel, when you need to feel it.
And, when I speak with individuals trying to find their way on social media, I always remind them to be authentic in their communication and their representation of themselves.
Yet I realized through a few key interactions with others, I’ve hidden a portion of the real me for what I assumed was the benefit of protecting others feelings – or my perception of their feelings.
On Twitter, I share my thoughts, opinions and feelings as a cancer survivor amongst my thoughts on cycling, gardening, running, etc. On my blog, I write openly about my fears and my conflicting emotions regarding survivorship and my activities pursuant to improving an imperfect healthcare system.
Even Google+ gets an update every time a new blog is posted.
Yet on Facebook, I passively shield others from the cancer-related facet of my life preferring to upload photos of my children and tandem bike rides with my husband. On Facebook, people are only getting half the story.
A new but very dear friend has unwittingly exposed this dichotomy through her own authenticity. Corrie openly posts about successes and challenges in trying to cure cancer and openly calls out the barriers amidst the day-to-day sharing of her family’s escapades. She actively seeks collaboration to cure rare disease and delights with photos of her children making lemonade.
Her authenticity has made me reflect on the social media separation I have created in my own life.
Rarely do I share my healthcare-related blogposts via Facebook, yet Twitter is the first place I announce a new post. I am incessantly tweet-singing the praises of local, regional, national and even international cancer support and research organizations yet few of these make it to the Facebook platform. And I spend an incredible amount of time linking people and organizations together yet I have avoided making any of these connections via Facebook, lest it unsettle my friends and family.
Ironically, the individuals linked to my Facebook account are some of my closest friends and family. They are the same ones who cared for my children, brought meals, sent flowers and transformed my front garden during the darker days of my diagnosis and treatment. They are the same ones who, on the six month anniversary of my diagnosis, joined me and my family in the great “Gratitude Party” celebration. And, ironically, they are the same ones who showered me with support as I chose to make a rather abrupt and non-traditional career change.
And yet I have subtly removed these people from a huge portion of my life by omission. So exclusionary are my conversations, many of them don’t even know what my work entails.
There was no malicious intent. Thinking deeply about the path to social duality, I believe I projected a bit of cancer-fatigue on these friends and family. I was tired of cancer talk so I assumed they were as well. Yet, when I created a new career around advocating for patient inclusion and expanding the general healthcare system’s view of the patient experience, I felt a bit of anxiety around sharing. I assumed cancer talk depressed people who weren’t/aren’t forced to think about the intricacies of diagnosis, treatment, recovery and, in large part, mortality, and I honestly didn’t want to bring people down.
In the past week, I realized this omission is actually a disservice to those that I care about and perpetuates the siloing of information I detest so strongly. Information and access silos are the bane of researchers, physicians, caregivers and patients everywhere. Information silos are barriers to the collaborative research that will lead to more effective treatments. Access silos are barriers to critical support and treatment information. Friends and family are not immune to their own healthcare battles and the current collaborations could be useful to them on a very personal basis. Moreover, the people who I am friends with are rife with their own redeeming qualities, many of those qualities helpful in building collaborations. By default, I have been exclusionary and I have underestimated an entire group of amazingness.
I have spent almost two months fostering a #IWishMyDoc/#IWishMyPatient hashtag campaign in partnership with the Flip the Clinic organization. The campaign that strives to bridge “the gap between patient and physician, with health, wellness, and shared understanding at the center.” Yet I’ve kept these efforts mostly sequestered to Twitter. Yesterday, Dr. Iris Thiele Isip Tan published a very personal blogpost on the #IWishMyPatient campaign. At the end of her post, she writes, “I must confess that this was not a comfortable post to write. But thanks for the opportunity Stacey!” I sat dumbfounded at that statement, overwhelmed with gratitude for her efforts to move outside her comfort zone to push the veritable ball forward. And I thought, “I must do the same.”
So while I can apologize in advance for adding a bit more to the data stream, a more appropriate apology would be directed toward those I have passively excluded for fear my healthcare-related posts would be annoying or overwhelming. I will continue to talk the talk and I will continue to walk the walk. And I will work on extending the whole of my authenticity across the whole of the communications space.
As I tend to say prior to my involvement in any active tweetchat, “Please, please, please join the conversation, read along and learn or simply ignore [the extra information].”