Ask The Advocates: Connecting With CF Peers
We asked our advocates, "What methods do you use to connect with your CF peers? How do you feel about these methods?" Here's what they wanted to share with you.
Response from Cheriz K
I understand why social media is such a confusing topic for the CF community. Parents don’t want kids on it at too young of an age, but at the same time it’s our only main way of communicating face-to-face with others with CF.
I use Facebook, Instagram, Twitter, Snap Chat, and blog about my life with CF. I love how it has helped me to gain amazing friendships with people who have the same obstacles or similar ones. It has helped to gain support, education, and communication. I rely on it a lot, since we can’t have face-to-face support groups like many other diseases.
I find a lot of support in specific Facebook groups, but I limit the number I am in at any given time - otherwise the posts overwhelm my feed. I love discussing CF, but it’s not the only thing in my life. So, yes, I use lots of social media (maybe too often) to connect and maintain my friendships with my CF peers, but I feel it is crucially needed (for myself) and has helped me.
Response from Janeil Whitworth
Personally, I love group messages on iMessage and Facetime! I have a solid group of women with CF that I talk to on a daily basis. Their support and encouragement has kept me sane in the often frustrating and isolating world of CF. Face-to-face friendships would ultimately mean the world to us, but communication through quick and easy technology is the next best route.
Response from Misty Roussa
I use whatever social media platform is available to me, with the exception of Twitter, to advocate for CF. There are a few CF mom groups on Facebook that have been VERY helpful with the unknown parts of having a child with CF.
The thing about being a part of these groups is that you really have to take everything with a grain of salt and you have to have a thick skin. There are times where I have seen, and experienced, a lot of backlash on something that someone posts. People on social media can be really cruel and sometimes they don't hold back.
Another downside to this is that I do read and see things that are really upsetting. CF is a life-shortening disease and seeing these events unfold is really tough on a mother watching from the outside. One of the numerous positives, and the biggest, is the connection that you feel with so many caregivers who are going through the same thing that you are. There is a lot of knowledge is that handed out on these pages and I greatly appreciate all of it.
Nothing right now
Response from Nicole Driscoll
I honestly don't have many ways of connecting with CF peers. I often kept to myself growing up and didn't engage with others with CF despite the encouragement from my center (back then it was considered OK to be in person with others diagnosed with CF).
My mother always felt strongly about not wanting to discourage me and isolate me from the realities of CF. Looking back, I don't disagree with her approach, but oftentimes I felt alone and frustrated that no one else really understood what I was going through. When I was feeling well, it was ok; but the times I would get sick and feel miserable, I would struggle with being so alone.
I often feel that way today, yet still have limited interaction with others with CF. It’s a personal decision; I try not to dwell on the fact that I have CF and live as normal of a life as I know how. That is how I cope. I do struggle with finding a happy medium though; especially when trying to manage my mental well being. Exercise often fills that void and provides me with an outlet for stress relief.
Response from Megan Barlow
My main form of communicating with others with CF is through social media. I started an Instagram purely for making bracelets for donations to CF and never could have imagined the support system it would have brought me.
There are times though, where I need to unplug from that channel. Sometimes it gets really hard to see other people’s harsh realities of CF and I sometimes need to stay in my own bubble.
However, I also participated in the CFF’s Peer Connect program. My first mentor didn’t work out after the first phone call we had, but I formed a really great connection the second time around. It was the first time I really got to talk, in depth, to a woman with CF who has gone through the process of having a child and also adopting a child.
Reddit and Cystic-Fibrosis.com
Response from Kenny Boutot
I grew up having a partner in crime to go to the CF doctors with, before being around other patients turned out to be dangerous. After that was discovered, I didn’t really interact too much with any other patients, despite being in a high school with 6 others. I was shut off from really discussing it with anyone besides friends, family, and my care team for many years.
This past year, though, I inadvertently found a community on reddit, and joined the community here on Cystic-Fibrosis.com. Both have been incredibly eye-opening, positive environments to understand other patients’ experiences and share my own. I’ve learned so much from the connections that I’m grateful for finding them when I did, and would encourage everyone out there to seek out communities that fit them.
How do you connect with CF peers?
We would love to hear how you connect with CF peers. Share your story so others can learn from you!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?