Today, I Launched My Cystic Fibrosis Secret
I’m a firm believer in the power of the Internet’s ability to build social connections among diverse groups of people despite the most isolating situations. Since it was created two years ago, My Diabetes Secret exists as an extension of that philosophy, providing people impacted by diabetes an opportunity to share what they are feeling in a safe space, free of shame, stigma, and judgment. But as isolating as diabetes can be, I’ve met a number of advocates impacted by cystic fibrosis that deal with isolation on a much more concrete level.
This may not come as news to most of you reading this, but I was surprised to learn that people living with cystic fibrosis are advised not to hang out together. They can spread dangerous bacteria to each other (but not to healthy people), which is why the Internet is vital for finding and engaging with peers in similar circumstances.
Platforms like Facebook, Twitter, and Tumblr are essential building blocks for social support and finding people who can relate. My hope is that My Cystic Fibrosis Secret can help contribute to that “me too” factor and become a reliable component of the cystic fibrosis online community.
My Cystic Fibrosis Secret is a safe space for you to share your thoughts, feelings, and fears about how cystic fibrosis impacts you — anonymously. No shame. No stigma. No judgment. This site offers catharsis through honesty.
Because I want to get this right, and there’s only so much my personal experience with type 1 diabetes can bring to this specific site, I’ve partnered with a few of the most passionate advocates in the cystic fibrosis community I know: Emily Kramer-Golinkoff, Erin Moore, and Breck Gamel. I am relying on their experience and expertise to inform how sensitive issues are managed, and when necessary, how to best communicate with the rest of the cystic fibrosis community.
If you want to share your own cystic fibrosis secret, please use this submission form.
This resources page includes links to mental health and cystic fibrosis-specific sites if you’re looking for additional information and support beyond this anonymous site.
From the beginning I’ve strived to provide a safe space for people to anonymously share what they are feeling knowing that for some, sharing is the first step to healing, understanding and connection. This mission continues with the launch of My Cystic Fibrosis Secret.
I hope this works.
Type 1 diabetes since 2002