Friday, September 21, 2012

Speaking of Illness -- Information and Secrets

One of my friends on Facebook asked yesterday if I found Facebook helpful as I navigated the ups and downs of my recent and current trip through the world of medical events. The quick answer is an obvious "Yes; the opportunity to share what I've been going through and the support friends have offered were big helps."

But the whole truth is more complicated.  When my first biopsy was scheduled, I didn’t think I would talk about it on Facebook.  Then one day, while trusting the long odds for a favorable outcome, I did mention the biopsy, more or less in passing.
When I first got the diagnosis on June 11, however, I didn't immediately mention it on Facebook.  There were a number of people I needed to talk to privately first and I couldn't 'delegate' the spread of news to random chance.  For a couple of weeks, I regretted having mentioned the biopsy at all.

Nevertheless, I knew pretty quickly I needed to share this experience and I wasn't going to keep quiet.  I particularly wanted to hear the stories of others who had had even somewhat similar experiences.  In order to connect, I wanted the use social media and cyber-media.

My decision was supported by the early knowledge that my diagnosis was not life-threatening.  Had I had doubts about my ultimately survival, I would have had a much more difficult choice to make, because talking publicly means you cannot keep secrets even from those who might wish to be protected – and whom you’d otherwise be willing to protect -- from the knowledge.

If I was ‘going public,’ I needed to tell my elderly mother that I had a cancer diagnosis.  I did not want to create a situation in which a dozen family members had to be drawn into a circle of secrecy and then perhaps reminded from time to time that ‘Mom/Gram doesn’t know.’  Luckily, I could tell her while providing great reassurance that my well-being was secure.  Mom does not use social media, so she could and would be spared much detail.  And my mother and I don’t live close to each other (she’s in Joplin, MO and I’m near Chicago), so she didn’t need a lot of detail – appointments or evolving treatment developments were beyond her ‘need to know.’  But I felt it was necessary to cover the general news with her if I was going to speak of my illness publicly.

I also needed to share the information with my equally elderly father-in-law and mother-in-law; FIL and MIL live a couple of miles from Lee and me.  We interact face-to-face frequently.  I could just imagine constructing repeated explanations for schedule conflicts and unavailability.  Better, I thought, to simply tell the truth from the beginning.  Certainly this was the better decision for me and I knowingly but without much sense of conflict, put my needs first.  Had my news and my situation been more frightening, perhaps I would have been more conflicted.

Interestingly, my decision did not receive unqualified support.  Some expressions of resentment reached me, second-hand.  That part of my experience opens up into some very complex questions about information sharing decisions and secret creating behaviors.  The best decision probably varies from situation to situation and person to person.  But I feel, for me in my situation, I made the best decision.

I feel fortunate that I have been able to speak openly.  I have received immeasurable support from both expected and unpredictable sources.  The general support has been treasured and delightful.  But I believe the very best outcome of my decision was finding someone within my own existing circle of friends who had been through almost exactly the same experience I am going through; she has been able to alert me most effectively at each stage concerning what I might expect as I move forward.