Craving Inside Information – from the Outside

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I mentioned last week that a dear friend has been diagnosed with a terminal disease.  I’ve known this for several weeks now, yet it still catches in my throat many times a day.  My work in patient empowerment and advocacy provides chafing reminders way too often that my friend is sick and that there is nothing – not.a.thing – I can do to help him.

Exacerbating my heartbreak is the fact that I am hundreds of miles away from where he lives, and I am a friend that doesn’t know his family.  That means that getting information is very difficult to do.

He was hospitalized about 10 days ago.  I do know that his family has rallied around him and I have been able to keep up… which is why I’m sharing this information with you.

His sister and daughter have been marvelous about posting almost daily to CaringBridge – a website that allows patients, families and friends to keep up with each other.  I’m able to go there are read about his progress.  I can add comments or send him messages.  It’s an opportunity for an exchange of information that if it didn’t exist, would leave friends like me entirely in the dark.

Caring Bridge is just one website that makes it easy for this type of information exchange about and for patients.  Care Pages is another one.  I actually wrote some Do’s and Don’t’s for using patient websites about 1-1/2 years ago (everything from understanding that they aren’t HIPAA compliant to being sure to wash your hands afterward if you are the person posting about the patient from a public, hospital computer.)

But until this experience, I didn’t understand just how important this ability was. I now understand the frustration of being on the outside, craving inside information.  “Important” isn’t even a strong enough word.  Vital, maybe.

So why am I sharing all this with you?

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