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Linoleum edition - Everyone has everything
1I wanted to make sure that I wrote about the positives of the everyone has everything phenomena. Balancing out my take on the saturation of illness symptoms in social media means looking at my own consumption and sharing habits. Part of the reason that I am fed so much chronic illness content is because the “god algorithm” knows that I am interested in that subject. My internet search, chatbot, new media, etc histories are laden with questions around health and wellness. I write about the subject. I post very irregularly on my private socials about my health journey for my close friends and family. My finances show how much I spend at pharmacies. My data, all that sensitive information we like to pretend isn’t being sold as a folder defining you, is medically focused.
When I was battling for an initial diagnosis over the last decade, I found solace reading stories on message boards and personal blogs of other women who were also fighting. People who had been ignored, excused, talked down to, misdiagnosed, and generally cast aside were reaching out to one another however they could. I remember hesitantly posting twice on message boards, looking for words of affirmation that I wasn’t crazy and that I should continue fighting for my health.
Tiktok, IG, YouTube, Snap, and other video communication tools were just starting their boom. I was too nervous, shy, to post anything personal on public sites. For those who were open to sharing their mental state and symptoms online, the sites offered a place where they could yell at the void. Some creators used the platforms to give detailed scientific information. Others were using it as a diary. Some of the videos were incredibly helpful, full of tips about getting doctors to listen and which symptoms were associated with which diseases. Some of the videos were just a place to sit and listen to another person’s agony, their struggles. Then, there were the uploads of random misinformation and straight lies.
I remember what it feels like when you are spending most of your days and nights in a haze of pain and fear. There isn’t much to actually do. You turn to media for quick and digestible content. You don’t have the capacity to read a book or do deep research into your symptoms. Catchy headlines and bite-sized stories are all you can digest. When some of those stories seem to validate your own current struggles, they act like a balm for your growing physical and emotional wounds. You begin to trust these storytellers and hope that they are leading you with truthful information.
That is part of the reason I started this newsletter. I need to vent, but more so, I have been dealing with having medical conditions for a very long time. I’ve gone through the ups and downs. I continue to experience different parts of my conditions all the time. I didn’t find anyone else out there who was talking about the daily stuff with a side of hope. I wanted a place to share the tips and skills I’ve learned and the many many falls and fails I continue to make along the way.
That trust and the desperate need we have for understanding is the reason I worry about the everyone has everything era. Any chance that a sufferer has to find community should be valued and held as a vulnerable space. Those spaces need to be filled with honesty, hope, and motivation. There should be videos and stories about the bad days and tough issues right alongside the helpful ones. Everyone doesn’t have everything, but everyone deserves feel understood. If consuming all that media feels right, do it. Just know that everything should be taken with a little bit of doubt and a lot of putting yourself first.
John Barrymore, 15 Feb 1882 - 29 May 1942