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Posted By : kitten cat meow - 9/20/2011 3:18 PM
I'm not sure if this is the right place to ask but I've been running out of ideas.
 
I have been seeing a PWCF for about a year now and quite a year it has been.  There's been some great ups and some note worthy downs and have recently been having more downs than ups.  This person has been in good/decent health throughout this time, but has been experiencing a lot of depression and anger.  At 25yrs old, this person has accomplished more in their personal and professional life than many people I know but still feels the frustrations of physical limitations, being biased against or treated differently.  There are day to day things that I will never "really" understand as I can only see and feel things from my perspective.  We've had some heart to heart conversations and this person has expressed that it would be great to connect to someone who lives thru the same things each day and really be able to feel understood. 
 
I've spent some time researching on the internet for support groups and chat rooms and other online places where people can connect but have had some frustrating results.  A good portion of what I found where more geared towards parents and finding out more information about CF.  Chat rooms I tested where very disappointing as I was the only one participating. 
 
Am I looking in the wrong places?  Can someone please help direct me to something?  Or is there anyone who would be interested in connecting with someone else directly?  Thru Facebook or email? 
 
I want to let this person to have the opportunity to really feel heard and I am strong enough to say that sometimes I'm not good enough. 

Posted By : CFer's Mom - 9/25/2011 5:21 AM
Any place is a good place to reach out for help, I'm sure that many will respond, family members and CFers. You mention Facebook I do believe there are CF groups on there to.

Posted By : Gemsi - 9/29/2011 3:15 AM
Hi,
there are a few different websites I have used, also facebook groups are fantastic.

This forum is quiet and not many people post anymore or keep coming back to it, but reading through some old posts can be quite informative. Also if this person did come on here, I would try to get on more often to hopefully offer some support.

A busier forum is www.cftrust.org.uk. It's is the UK based registered trust for CF. They have sections for adults, teens, parents and partners. Even though it's UK based there are a couple of members not from the UK, and while US advice not be in great supply on there, it's a great place for support, and is a lot busier.

Hope this helps
Gemma
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Posted By : livingwithcf - 9/29/2011 9:10 PM
Kitten Cat Meow

I'm 36 and I have Cf I would be willing to talk to your friend. I can be reached at mandychap_17@yahoo.com. Hope to hear from them soon.

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