Since joining Kate Bush's Lungers United group, I've been thinking more and more of what it was like growing up. When I was growing up I was always told that I had this disease and I had to survive it on my own, that there was no support out there for me. The only support for me was the support from family, and the only problem with that is that family is there with you, but they don't know what it feels like to be you. They don't know how hard it is to breathe, how much pain your body can be in, the constant need to cough.
They know what it's like to see it.
Since social networking became available, it has opened up a world of communication for people with CF. It gives us the opportunity to hear other peoples triumphs and struggles. We know that we are not alone anymore.
We also know now that it isn't so bad spending time together, just as long as we are free of "bad bugs". We can't be afraid of living.
That's what I was always afraid of, I was afraid of living, I was afraid that everything was dangerous.
I'm glad that we have the ability to lean on each other, call on each other when in need of support.
I always say, I would never wish this disease on anyone, but until you have it you just don't get it.
Support from family and friends is always great and welcomed, but sometimes the only support that I want is the support from people who understand.
