Hello World!
Cystic Fibrosis is a funny little disease. Every CFer has different challenges and experiences life differently. For most of my life the only other person with CF that I knew was my my older brother. We were told right from the start that we were not allowed to be in contact with any other CFer. While Cystic Fibrosis is NOT contagious, CFers can pass 'bugs' to eachother and cause 'supergerms.' It can be dangerous. For whatever reason, unknown to me, my brother and I could be in contact and it was ok, but not with anyone else. So there are no support groups for CFers like there are for people with cancer or whatever. That can be lonely.
For a long time I rarely told anyone about my CF. I was afraid of judgement. I wanted to be treated normally. Its not like other people say "Hi I'm __, I have ADD." So it would be weird if I said "Hi I'm Jessi, I have Cystic Fibrosis." That might scare people away, haha. I have a close group of friends I have known since I was very young, like 9 or 10 that know about my CF but new people had no idea. Most people have never even heard of Cystic Fibrosis. So I was feeling lonely in the CF department and decided I needed to change that.
I joined the world of twitter. My thoughts going into Twitter was I'm just going to be completely open about having CF and just see what happens. If I feel uncomfortable, I'll just delete my account. I'm SOOO glad I did!! I have met so many people who have CF or know someone with CF. CFers who have gone through transplant, other waiting just like me. I've met people from all over the world. I was shocked there were that many people who had even heard of Cystic Fibrosis, haha. It is a huge community I never knew existed. I'm so grateful I joined. The people I have met on there have opened their lives, CF or otherwise, so in turn I feel safe to share my story. It has given me a place of non judgement to just speak my mind and share what I feel. It has been a huge eye opener to hear about people who feel the EXACT same way about things. Sometimes I read fellow CFers posts and feel like they are inside my head! It still blows my mind that someone else has the exact same thoughts as me. So I send a huge thank you to twitter for giving me a platform to just, well, be me!
Also a HUGE thanks to all my twitter friends. You guys give me great support and there is always someone out there who will listen to any problem I have. You are all a big part of my life now. Again, Thank You!
Breathe Easy
Jess, the culture of silence surrounds a lot of medical conditions. Most of my friends don't know I have epilepsy, mostly because of my embarrassment. On one hand it's a shame because its a circular thing - if more people disclose, it's more likely that more will disclose etc. But then again, when you tell people you have a chronic illness, there is a subtle change in the way they treat you, do you find?
ReplyDeleteIt's a shame that you can't mix with other CFers. I never knew that. Twitter reigns again!
Hi there!! I found this post through Beth Peters on twitter:-) I can't imagine the loneliness this disease brings when you can't have a support group with others going through the same trials. I think things like twitter are so great so you can now have that support!! We are both nurses and sisters and we wish you strength!! Get luck with getting a transplant too:-)
ReplyDeleteAnna & Selena
www.annieandisabel.com
Hi I just wanted to say I can relate to you. I waited 9 months at one Center before they told me they didnt think there was time to transplant me so I moved my butt to NC where it was about 2 months and I got my life back. Life now is so different and amazing and hard at the same time. I hope you get called soon, with the perfect set for you
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