Being Chronically Ill

Well, I suppose it’s time I “came out” about having a chronic illness. In truth, those who follow me or who have read my comments on others’ posts on Twitter, where I go by the oh-so-original handle @KevinReinholz, already know that I have ME/CFS and Fibromyalgia, and Dysautonomia/POTS, among other conditions.

It’s funny, I started this website not with the intent of blogging, but in order to promote my book, Hoffnungslose Ziele. That was the realization of a childhood dream of mine. The motivation and sudden urgency to make that dream of writing and publishing a novel became a reality due to my illness, which for the past 3 years has been slowly robbing me of so much else in my life. For me, stubbornly persisting and creating something out of my imagination and then releasing it into the wild was my way of resisting my illness and the many limitations it has placed on my life.

I have written a very long page about my illnesses, the history, the struggle to get diagnosed, and the impact on my life. I’m not ready to “go public” with that just yet, so please bear with me if you’re interested in a long read about my evil health woes. Meanwhile, I just purchased Jen Brea’s film documentary “Unrest” and would put that out there as a “finally!” in terms of bringing attention to the oft-neglected and much-derided (but horribly debilitating) illness of ME (aka CFS). Everybody should see it. I’m not going to try to claim that my personal experience has been the same as Jen’s, because it hasn’t. Each patient is unique. But I do think her courageous work shines a much-needed light on a health epidemic that has been very much ignored and neglected.

I had no intention of ever going public with any of my illnesses. I planned to present a happy, confident public face like so many of our friends and families do on platforms such as Facebook (which I really don’t enjoy these days because it is so incredibly fake, largely snapshots created by people at their very best, or political whining and memes, or competitions for attention over who has the most drama in his/her life). After all, I was promoting a “brand”: Kevin Reinholz, freelance writer/author extraordinaire. I’ve been a relatively private person for quite a long time. Part of that was getting burned in the past for being too open, part of that had to do with professional considerations, and part of that had to do with a desire to protect/shield my family. A public person I was not.

Suffice it to say, something changed. I ventured out into the world of Twitter (which I have come to enjoy quite a bit), and between enjoying reading posts by my favorite celebrities and the occasional news story, I tweeted the occasional thought or promotional post related to my book. Then I read about a young woman suffering from two of my most debilitating conditions–ME/CFS and Fibromyalgia–on my go-to platform for news, the BBC. (Sorry, American journalists). I was absolutely appalled by her government’s heartless treatment of her disabilities, which struck a familiar chord with many of my own fears and insecurities about my own diagnoses as well as my future. So I reached out to her on, where else, Twitter.

That’s when I started making friends on the platform, friends who suffered from the same “invisible illnesses” I do. Friends who understood what I was feeling because they were feeling it themselves. There was something extremely validating, even comforting, in knowing that others felt and suffered as I did. Granted, I wouldn’t wish my illnesses on my worst enemy, but knowing I wasn’t alone meant a lot.

I was also impressed by the courageousness of this particular woman in going public with her chronic illnesses using her real name–no hiding, no pseudonyms, facing the full brunt of Twitter trolls and heartless idiots who don’t know the first thing about either her or her illnesses. She became somewhat of a hero and a role model to me. I respect her immensely. So, I resolved to try to emulate her, even just a little, by going public with my own illness story, in the hope that others unable or too afraid to go public could read about my experiences and feel validated about their own. In truth, I’ve already let most of the proverbial cat out of the bag, in the course of publicly conversing with my #spoonie Twitter friends.

I don’t expect to ever have nearly as many followers as my #spoonie hero, or as powerful of a voice, but in my own small way I hope to contribute to the conversation and the solution by lending my voice to the cause. More to follow as I save up enough spoons to write!

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