Connecting and Protecting. The Benefits and Pitfalls of Online Disclosure

Connecting and Protecting. The Benefits and Pitfalls of

Online Disclosure.

Marie Ennis-O’Connor @JBBC

“Seriously ill people are

wounded not just in body but in

voice.”

Arthur Frank

Sense of belonging Identify with community

Emotional connection Shared experiences

“Before cancer arrived unannounced and uninvited like a stealth bomber, I felt brainwashed, picturing the diagnosis would yield tattoos of pink ribbons,

car magnets, strawberry cupcakes delivered daily to my door. From the spectator side-lines of cancer

before the diagnosis, it all looked one-dimensional “ - Michelle Weldon

“But when I arrived on this side of cancer, I was able to see a truer picture, one that is clear and unclouded, a broader,

richer landscape of many colours.”

Activism

To Summarize

• Helps us to reconnect to a new sense of self

• Reframes illness

• Provides an expressive outlet

• Decreases isolation

• Increases connection

• Shared sense of experience

• Helps to cope with illness and its aftermath

Should we stop writing just because we are nearing the end of life? Should we forego the social interaction that is made so difficult by our physical condition but is facilitated through the new media?

Who determines appropriate use of social media in a situation when a family member is doing the posting on social media and not the patient?

“For me I tend not to share my health story publicly. If I’m identified primarily as patient I feel I might lose professional credibility. We need to change the culture. Patients ARE also professionals. You can have identity that is part patient and also a lot of other things in the universe.”

Ask Yourself…

• Where are you sharing information online and what level of control will you have over it?

• If your intended audience were sitting in front of you now, how comfortable would you feel sharing this?

• How do you think you’ll feel after sharing? Are you ready for feedback (positive or negative)?

• What support will you have in dealing with any emotions that may arise?

To Protect Yourself….

• Think ahead! Be aware of your digital footprint.

• Allow trust to build over time.

• Share only when ready.

• Protect yourself if you are feeling vulnerable.