Presentation at Queen's University Belfast. The Medical, Ethical and Legal Repercussions of Blogging and Micro-Blogging Experiences of Illness and Disease.

1. Connecting and Protecting.
The Benefits and Pitfalls of
Online Disclosure.
Marie Ennis-O’Connor
@JBBC

3. “Seriously ill
people are
wounded not just
in body but in
voice.”
Arthur Frank

5. Sense of belonging
Identify with community
Emotional connection
Shared experiences

6. “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

7. “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.”

8. Activism

9. 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

16. 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?

17. 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?

19. “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.”

20. 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?

21. 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.