When Others Share First

I’ve been pondering this phenomenon for quite a while and certainly for the same amount of time that social media has been present in our lives. Yes, I remember a time when social media wasn’t a thing (I realize I’m dating myself here). I remember when I first learned about Facebook (shocker) and when the internet suddenly because a huge part of our lives. Sharing someone’s personal or private information before they (or their family does) is not relegated to social media, but a social media post seems larger than sharing individually.

I remember some posts and articles some years (or maybe decades) ago about people posting or sharing pictures of people’s weddings before the bride and groom or babies before the parents posted. These situations felt so alien and incomprehensible to me at the time, something akin to dangerous gossip. And then I saw it happen and I remember talking to the people who were victimized in this way, how devastated and betrayed they felt.

In the context of Stage IV Metastatic Breast Cancer (MBC), I’ve seen this rushing to share individually, in support groups, and more publicly on social media in the following contexts:

• sharing a diagnosis before the person diagnosed has decided to share;
• sharing about progression or side effect before the person diagnosed has decided to share;
• sharing that someone has entered hospice before the family or individual has decided to share;
• sharing that someone has died before the family;

I’d thought that this experience was not a subject that comes up very often but a quick search of posts in various Facebook support groups revealed this happens relatively often. What also surprised me was how often family members were the ones to preempt the diagnosed person by sharing private, intimate information before their loved one. The justification shared by many of the posts I perused was that the diagnosis was affecting more than just the person with an MBC diagnosis and thus they felt entitled to share. Another justification was that the person with the MBC diagnosis needed help and the sharing was intended to obtain that support for the loved one. Other posts had no justification. What united every post I saw was the palpable pain of the betrayal.

So when is it ok to share personal information (in this case often protected legally by HIPAA) about another person?

While I am inclined to say never, having experienced this myself, it does seem like there may be more nuance to this subject than I’d initially thought. Take those family members who saw their person struggling, anxious, overwhelmed — their motives in sharing were to get their person assistance. Or what about those family members who were desperate to get help for themselves as they struggled with supporting their person?

Rather than focusing on the motives and starting with the assumption that motives aren’t at issue, I came up with the following boundaries (a/k/a tools that allow us to be in community with others) that may be helpful:

• Talk to your people about what is ok to share and when. Setting expectations and verbalizing boundaries can be a helpful exercise when working through these experiences.
• Talk to your people about why it is important to you when/who shares your personal information. It may not be clear to your circle why something is important to you and protecting your peace is a sufficient explanation.
• Designate a place where you will share when you are ready that allows your people to know that it is then ok to share with others.
• Designate a person to share information if you don’t want to do it yourself (bonus that this person can be the point person for questions).

Regardless of how you share your information or how you designate others to do so, it is important to remember that your information belongs solely to you. No one else has a claim to that information. If you decide never to share, that’s up to you. If you decide to share more openly, that’s up to you. And if you change your mind about when and where and who you share your information with, that’s up to you. No other person is entitled to you or your information, period.

You do you.