Here I am, sitting by my mother’s hospital bed. I’ve barely left her side since she was rushed here in a critical state on Friday. Good news: the prognosis is positive, but it was and still is very serious.
One of my first instincts upon confirming that her condition was stable was to reach for my mobile to write a Facebook post about what happened. I didn’t post anything though, because I realized it wasn’t my news to share. Plus, at first, she was in no state to consent. We’ve become so used to sharing all our personal wins and struggles on social media that it’s now a reflex.
Social media platforms like Facebook are really useful in these situations. They provide an easy way to instantly notify and update friends and family. They also allow easy access to advice, community support, and guidance surrounding medical issues. But if I’ve learned anything from this ordeal, it’s that we should all be sure we’ve planned our personal strategies before hitting the send button.
Considering what to share
We’ve all seen friends share their medical conditions online. Sometimes they’re vaguebooking, while at other times they’re giving out TMI (too much information). Patient confidentiality is very important for medical professionals, but we often give away lots of private information about ourselves or about our loved ones without even thinking.
To make sure that you don’t disclose information that you will later regret, ask yourself a few questions:
Why are you sharing? Some people seek support; some want to inform family and friends. Others chronicle their stories to offer support to other people in the same situation.
How much information are you willing to share? You may want to share your whole journey, or simply post short status updates.
Who are you sharing with? Determining your audience will help you decide how much to share and on which platform. Facebook, for instance, allows you to select specific friends who can see your posts. You can also create a group and add those who need to know.
Do you have consent? If you’re sharing another family member’s medical information, think hard. Stories about your children’s or your parents’ illnesses may have an impact on their private lives down the road. Kids can’t really consent, so you should think about their future online selves.
The answers to these questions will vary wildly from one person to another and from one medical condition to the other. By asking yourself why you’re sharing information, you will be more likely to feel confident that your posts are thoughtful and will have your desired effect.
Knowing the risks
Though the benefits of sharing information about our health online are great, there are risks associated with these types of social media activities.
Privacy: The biggest concern for everyone is that no matter how secure we believe our posts are, information might fall under the eyes of someone we don’t want to see. In one example, a patient who was collecting disability payments stopped receiving her benefits because of her social media activity.
Unsolicited advice: Be ready for all kinds of unwanted advice. Some people become armchair doctors as soon as you disclose medical conditions, worse is when someone tries to sell you the latest fad remedy. Luckily, there are polite ways to deal with these situations.
Misinterpretations: Even in the best of times, we might not be conveying what we think we’re communicating. When under a great deal of stress, we tend to not be as clear in our writing. This could lead to family and friends getting the wrong message. While we’re on the topic of miscommunications, be sure to avoid vaguebooking.
Relationships: There are all kinds of consequences of posting medical issues on social media. Some people report that they lose friendships over posting too much about the illness. Others might find themselves blamed for not including a particular family member in the conversation. On the bright side, you may find support where you least expected it or even cultivate new friendships along the way.
Elaborating a personal policy
Once you’ve established your purpose and have understood the risks, you’ll feel much more confident about sharing your experiences. Set your personal limits. It doesn’t have to be a full out communications strategy. Only you know what feels right.
Whether you or your loved ones are sick now or not, it’s good to set yourself a personal policy about your health and social media now. Because once you’re in the thick of a medical situation, you’ll know what to do.
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