Throughout our lives we pass from disability to ability, one state of health to another. We are labeled based on our current health status. These labels also place us in groups, some which we are glad to be in and some which we are not. The diagnosis of any illness brings different reactions. A diagnosis of a terminal illness may result in fear, anger and grief for those who are diagnosed as well as for loved ones of the patient. The process of accepting a diagnosis takes time, often because it involves acknowledging that their disease is limiting their autonomy. Many find that creating a plan to manage their disease treatment to be a useful way to regain some sense of control in their illness experience. By taking an active role in their treatment it may be easier to come to terms with a difficult diagnosis. Recently, I spoke with ten people who were given terminal diagnoses to ask their opinions on the use of social media as a tool to document their medical journey. Specifically, whether they believed being public or private about their treatment gave them more comfort.
Many patients chose to provide updates about the course of their treatment via social media. Contrary to concerns of over sharing, these patients feel that online platforms provide an important outlet for their illness experiences. The use of social media as a means of support bolstered their mood throughout the treatment process. The continued public concern and consumption of their travails made them feel as if they were a part of a community. They felt loved.
Conversely, those who chose to remain private about their diagnosis stated that they did not want to be in the public eye. They felt their illness was not for public consumption. Privacy was of the utmost importance for them. These patients aversion to a public illness narrative was further reflected in their need to create a supportive, caring community among family and friends who respect their privacy. Many even requested that their family and friends refrain from posting anything about their illness on any social media platforms.
Both groups felt a comforting sense of control over the uncontrollable by by choosing how to communicate with others regarding their treatment and progress. Once a diagnosis as made patients often immediately feel that they no longer have any control. Before patients are even fully able to absorb the unthinkable their doctors have already begun treatment planning processes. After the reality of their health status sunk in they then wondered how to manage the flow of information. Friends and family were well-meaning, doctors were either sympathetic or clinical, their world was crashing around them. The one part of their life they could control was the message. Controlling how the message was conveyed and who it was shared with gave them a sense of power over a disease that shows no mercy. Control, whether through social media or private channels returned to them.