A article with the title Whom Do You Tell When You’re Sick? Maybe Everyone You Know in the New York Times stirred up a little discussion when shared in my Facebook flow the other day.
One of the comments made by person sharing the article was that is was surprising that going public [with your disease] gives patients a sense of control over their lives at a time of often intense helplessness. Quickly a whole group of e-patients responded that this was not surprising at all – and I personally agree.
I’m known among my friends as a bit of an oversharer I think, sharing e.g. pictures of my nose before and after having a huge nasal polyp surgically removed from it, not to mention rather graphic stories of the procedure and the pains leading up to it. This is part of my way of handling this situation.
My reflection when reading the facebook post was that there are many degrees and aspects of sharing that needs to be considered. I’m a very open person, but whether I choose to share or not depends on the level of seriousness, who else is involved, where I am in time in relation to the illness/event, how scary it is etc. I realize that I tend not to share my depest, darkest fears in relation to the illness – but sharing practical details I have less of a problem with. Either way, I believe that the choices I make continuously in sharing (a new choice for every post I write) adds to my sense of control. The insecurity we face in illness is one of the most disempowering and frightening feelings I know – and any means to battle this and regain a sense of control (whether it is real or not) is positive. The key words here being control and choice.
When other people make choices regarding information sharing and openness for me, it takes away my sense of control. That is why I cringed a little in yesterdays session here at the Salzburg Global Seminar when the question was raised whether I would choose to link my facebook and other social media to my electronic health record so that others could analyse it and learn from it. I realize that my sense of control over what I post in social media is naïve and that this information is already analysed and used in all sorts of ways that I cannot predict – but still… Making a one time choice (in a quite vulnerable situation – when seeking help at a hospital) to connect every post I’ve ever written to all the information I have in my medical record? I wouldn’t mind being able to link the posts I choose from my facebook/instagram/blog/twitter to my EHR though – that would be excellent!
Anyway – what I wanted to say was that openness and sharing of my personal health information is not a on/off button. It’s a choice that I make everyday, and sometimes I choose not to share, or where and with whom to share. I may possibly regret later on sharing certain information, but that is a risk I take into consideration every time. How do you share?
[post 12 in the #blogg100 challenge]