Importance of online communities

[jricci]

Watched NBC nightly news tonight and there was a segment on the importance of an online community for cancer patients.
Different diagnosis but same message: A forum like cysticfibrosis.com not only provides emotional support but also empowers patients by sharing knowledge that allows them to advocate for themselves and can make the difference between life and death.

Here’s the news segment:

http://www.nbcnews.com/nightly-news...-cancer-patients-empowering-many-840655427940

Thanks to all that have shared their knowledge and experiences over the years.

Happy Holidays!!

 

[Jane]

I agree and am grateful for the resources and support this community provides. Thank you all and to Jeanne for all your work on our behalf. You are making a difference.

 

[MissAlexsBP]

Hello!

I echo both of your thoughts! I think this community is especially important due to the precautions and infection control protocol with people with CF -- since I have cepacia I cannot attend any CF events -- which can lead to the feeling of isolation. Through the forums I have gained lifetime friends as well as support! Thank YOU to everyone for sharing in this journey, for your energy, your input and your encouragement!

 

[kenna2]

Yes, thank you for this community. Thanks to everyone I feel I have more information, control, and feel more prepared to deal with whatever CF throws my way. This site has kept me grounded and sane.

 

[dbtoo2]

I found this forum in the nick of time,
I felt for sure I'd lose my mind.
I thought compassion was what I'd find.
Instead I found reality.


I thought you'd share my hurt and fear,
Encourage my heart and hold me near,
Coddle my needs and treat me dear,
Instead I got the truth.


I asked a question to which I sought,
Knowledge and wisdom were to be taught
With kindness and caring was what I thought,
Instead I got the facts.


You grounded me with what is real,
You said with what I'd have to deal,
You enlightened me to what I'd feel,
Instead of rosy pictures.


What's with 'you people' can't you see
I only want what's good for me
I don't need your reality
Instead of paramnesia.*


* noun: (psychiatry) a disorder of memory in which dreams or fantasies are confused with reality


But then I found that there are some,
Who's words do sooth and remove the glum,
And help me keep from feeling dumb,
Instead they bring me hope.


They know my pain
It's not in vain
They are so willing to explain,
Instead of confusing terms.


They offer love and true concern,
They are so willing to let me learn,
They give of what I do so yearn,
Instead of harsh retorts.


So good and bad
Pleasant and sad
Happy and mad
Too late, you're hooked!

dbtoo2 6/16/2008