I write anonymously. I write anonymously because I am aware of what the consequences could be at my work if everyone – including my boss who hates knowing any personal information about any employees – knew my inner thoughts and challenges. I write anonymously because my trauma history isn’t mine alone, and I don’t want to take away someone’s voice and someone’s story without their consent, even if it is my story, too. I write anonymously because I have C-PTSD. I don’t inherently trust that the world is a safe place, and sharing my name is making me even more vulnerable. It might make me a target.
I write anonymously, but I admire those who don’t. It takes a lot of guts to own your story that way, and to have silenced the bully-in-your-brain enough to stick up for the bully-on-the-street’s next victim. Thus, I am both furious and afraid to have learned about a specific online abuse site targeting Spoonies. Apparently, this group has been trolling dysautonomia message boards, and now dysautonomia online spaces are warning others that what they post on Facebook, on blogs, and on support forums is not necessarily private. They have not caught the member who masqueraded as a dysautonomia sufferer to take the screenshots and make the abusive hate posts. The group may have targeted dysautonomia sufferers lately, but based on what I saw of their website, they have targeted all Spoonies at one point or another. They also post photos – again with real names – of people they consider fat, ugly, slutty or any characteristic you can think of to shame someone with.
I am not posting the name of the abuse site. (Though the title of this post is a play on words that may mean something to someone if their Google-fu is strong.) A site that is willing to post real photos of people, stolen from private spaces with real names attached, to make comments implying sufferers have “Munchausen-by-Interwebs” – and then harass these members on their private message threads – seems like the type that would search for their website name online and harass those who speak out against them. They have whole threads devoted to specific Spoonies. They seem like the kind of abusers who would even pull DDS attacks on a blogger’s website or otherwise attack websites directly from behind the safety of anonymity. The website is hosted on a foreign server, so I’m not even sure who to report it to, or if anything can be done.
I’m the kind of individual with C-PTSD who feels safer, even if she may not be able to stop bad things from happening, when she at least sees it coming. My blog – and most importantly my real name – was not on the site when I checked. Nor did I recognize the names of any of the blogs I read. (I would let any authors know if I had recognized their blogs.) I am sure they will be hunting for “fresh meat” if/when it is discovered who on that original internet forum infiltrated the dysautonomia groups. If you want to know the name of the site, send me an email. I will tell you offline, but I warn you it is beyond triggering and is into full-on abusive on that site. Make the choice to look or not look as is safe for your own circumstances. (AKA, don’t look if you know it will trigger nightmares that make you throw your back out.)
All bullying is wrong and evil, but the posts I saw on that site attacking individuals with trauma histories seem like the most wrong of all the many wrongs. It probably took those bloggers years to admit their trauma history, and these cow’s arseholes would knowingly send them back to a place where they are at risk for harm (at their own hands or at the hands of abusers who are reminded where to find them) just to “milk” a few laughs. I don’t normally use the strongest of language uncensored on this site, but fuck them.
I am starting to run out of ink in some of the gel pens in my giant, 100-pen multi-pack. I’ve started trying to specifically use pens that have the most ink to “spread out” the load and get the most use out of the pack before I must buy another. That experience has given me a good sense of what my typical color palettes look like. I rotate among all colors of the rainbow, but I don’t gravitate to the brightest, most neon, colors of any hue. I thought I did, but the evidence of the least-used pens doesn’t lie. I wonder if that has anything to do with the PTSD tendency to feel ashamed (or afraid) to draw excessive attention to oneself under anything other than controlled circumstances? Would I like neon more if I wasn’t always partially trying to stay hidden?
You’d think I’d be used to being in the spotlight by now. I have a very hyperactive flavor of ADHD. It weirds me out to draw attention to myself, but everyone who has met me in person notices me anyway. Thanks to ADHD, I’m quite memorable with my twitchiness, interrupting, lack of volume control, social awkwardness and general intense-ness. Improv may have helped me feel a little more comfortable in my unintentional spotlight, but I still have trouble even admitting I’m bright, much less engaging in the kind of self-promotion at work that it takes to make the C-suite. I keep feeling like making those claims will just make it that much worse when I’m inevitably exposed as a fraud. It still feels like standing under a lightning rod in a supercell thunderstorm. I can only begin to imagine what it must feel like to find yourself targeted by a group of online abusers for speaking out against abuse just for lols.
If anyone – myself included – ever finds their words on a site like that, I hope they/I will have built up enough self-confidence by then to view it as a badge of honor. Those abusers using anonymity to cover themselves are cowards. People posting what it is really like to have a chronic illness, to have C-PTSD, or to have bipolar under their own name are courageous. They are wearing their heart on their pen to educate others, to direct those in need to resources, and, most importantly, to make sure others feel alone. I’ve seen multiple instances in my brief survey of the site of bloggers who knew they were being attacked and, while they may have had to shut down one blog, just kept posting. If any of those individuals ever read this blog, a sincere thank you for not turning tail and running. An even bigger thank you to survivors with trauma histories who still didn’t run. I doubt I will ever have enough faith in humanity in general to think using my real name wouldn’t make me a target, but I hope someday I have enough faith in myself to become a public advocate despite that fact.
In the meantime, have some rather bright Where’s Whoopsie entries to hopefully cheer everyone up in the face of such a horrible reminder of what people can be like. Some things are horrible, but we need to speak out and seek good things anyway. Stay safe and practice self-care, everyone!
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Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.
Goodness, what is wrong with people? 😦 It takes a LOT of courage to put your real name and identity out there with you actual, deepest, inner thoughts. I cannot do it, for much the same reasons as you. I don’t trust people or the world much, and am just generally very secretive of deepest emotions.
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It’s absolutely disgusting that some people find pleasure in making others miserable and just despicable that they would specifically target people who are already fighting a daily battle. I’d say shame on them but they obviously have no shame.
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This story makes me both angry and sad.
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Right around the time I started to connect with other spoonies on social media one girl in particular was being viciously cyber bullied on one of those sites. It broke my heart as she was a teen and really taking it to heart. I had to decide if I would want to know and I decided…I don’t. There are bullies everywhere but especially on the internet. They are angry, hurting, lashing out. Some people are just really mean spirited. Ultimately I decided not to go on their unhappy journey with them. In other words I don’t check, I don’t want to know. It doesn’t make me a better person to know, it won’t make my illness better, in fact the heavy heart is likely to make it worse. So I try to steer clear. It’s absolutely shameful that this is happening but honestly this world is filled with such emotional disconnect and lack of compassion. All I can do is try to be my best self and hope that my son has learned the same.
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People are deplorable. Truly. I belong to a few groups for ME/CFS & Fibro and we had similar issues. There was even a group called something like “Fibromyalgia isn’t real” or some shit. Can you imagine how sad one’s life must be if they take the time to harass truly ill people? Demented.
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Wow!!
I write under a pen name.
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This is so sad to hear. The thought that people are abusing people who have already been abused…really? It makes me sick to my stomach. Thank you for having the courage to call them out in it!
By the way…I color too. Your pictures are beautiful. Don’t worry about your color pallet…it comes from the heart and from your feelings. Just let it be. It’s great therapy.
Keep on keeping on my friend. Anonymous or not, I’m proud of you!
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Thank you!
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