It dawned on me that I’ve been documenting my life via a blog for nearly nine years. In 2015, after four years, I left the simple health updates of CaringBridge behind and started a more in-depth look at me as a whole. My thoughts, experiences, creativity, and ramblings we’re given room to grow on a more customizable blogging platform. I found my mind needed more room to unpack its reflections as my life became more and more consumed by illness. I named this blog, “A day in the life of the Tube Fed Wife,” having no idea that nickname would stick with me so many years later. This extension of my innermost thoughts, fears, and often dark reality, lead to more attention than I anticipated.
What began as my journal, a place where I could unburden myself from the thoughts constantly swirling in my mind, over time, became a community. A beautiful community of caring individuals who wanted nothing more than to support me and my family. I found tremendous strength and friendship through their kind messages and comments. Eventually, this incidental community where millions of individuals tuned in to read, watch, and listen to my musings, became a sort of online feast of my most intimate, fragile moments. While everything I shared was authentic, it was just that, EVERYTHING… and holding nothing back from millions of people leaves little to nothing left for you. My emotional decompression, my diary, slowly spiraled into a platform I felt governed by - instead of the other way around.
Bred by my unhealthy internalized expectations to keep this accidental community afloat, I widened my content to other social platforms that would be more convenient and resourceful. As each new social platform was added my blog became utilized less and less. Every day I feared letting that community down by not posting an update, image, or video. I become a moderator, content manager, and social curator, instead of a chronically ill individual writing for mental alleviation and comfort. My posts were no longer geared towards generalized reflections of my life with disease, but instead, reflections of what I felt the community desired the most within my battle. Even while my health spiraled I clung desperately to this shackled virtual reality. The one where I could make others happy. The one where I wasn't a burden. The one that, while gruesome, still looked curated and tasteful. The one where I was more than just a shout into the void of humanity. My online presence began to eclipse the true reason I started to blog in the first place. I found my first thought of each morning being worry over what content I would publish that afternoon, what interviews I needed to prep for that week, or what comments and messages I had yet to reply to. My method of stress relief morphed into an unhealthy, full-time job.
I do not regret the light I was able to shed on living with this unknown disease for so many years. And I certainly don’t regret experiencing the beautiful friendships, expressions of selflessness, support for my family, or incredible opportunities that sharing provided me. In fact, I am eternally humbled by those encounters. Those years were some of the best of my life, even at my lowest health. I am grateful, however, that my consciousness has grown enough over the last year to acknowledge the unhealthy side of sharing. The vortex that can suck you in and slowly begin to consume you.
Does choosing to share less mean I’m suddenly not sick? Does it mean that I a suddenly not struggling? Does it mean that I no longer want anything to do with the community that carried me through the hardest times in my life? Absolutely not! It means that I have grown. It means I can now see the harmful consequences of losing yourself. It means that I am moving back to basics. It means I am removing self-imposed pressures. In so doing I have deactivated my public social media accounts. So please do not worry if you can no longer find me on Facebook, Youtube, or Twitter!
I love each and every one of you who have supported my journey. I am so grateful you are in my life. This change is such a weight lifted off my shoulders. A weight of self-imposed commitment and expectation I have been trying to dismantle for years. I was simply never stong enough up until this point. I feel the lightest I have in ages!
I will still be around on my private Instagram @TheTubeFedWife and of course here on the blog with health updates.
Xoxo, Chanel
