Update: I also posted this in the comments, but then I remembered that smarter folks than I often skip the comments. The author of the original blog post that inspired this one contacted me. She has taken it down and apologized. She also seemed like she was still beating herself up over it even after I accepted that apology, so I want to state openly that she doesn’t need to. In talking to her, I’m reminded again that being non-neurotypical so often means communicating is terrifying and awkward and hard. It definitely still is for me, especially in person. We all make mistakes. We all struggle with what we mean to say not ending up being what we actually say. Character is in how we respond to our mistakes, and she showed she had character by caring when her post so severely triggered me. If (when – I have ADHD after all!) I ever upset someone with my writing, I hope my readers will tell me so I can have the chance to apologize, too.
That is something that none of the other déjà voodoo writers I have ever contacted about internal stigma – including Dysautonomia International, who puts that kind of stuff on main public pages – have ever done. I think it was very brave of her. I’m leaving this post up because I’ve seen a lot more than just one déjà voodoo post out there, and, to date, only one person has said: “I’m sorry.” There are a lot of folks who still need to see this post.
But, the author of the post that originally inspired this one is no longer counted as one of those people in my book. I genuinely wish her the best in her blogging tenure, and I hope others will too. Being non-neurotypical is rough. We both know it. It’s important to call out internal stigma, but it’s equally important that we forgive mistakes within a community of people for whom just communicating at all is often fraught with fear and memories of years of failed attempts. Point out mistakes, then welcome their makers back into the community with open arms immediately as soon as they make a genuine attempt to correct them. If we continue ostracizing our own internally long after they have apologized, then we risk becoming abusers in yet another way. We risk becoming those emotional abusers who keep torturing people for their “mistakes” years later without ever giving them a way to move on. I’ve also been on the receiving end of that type of abuse, and I don’t wish it on anyone who cares enough reach out to me.
Do you ever experience blog post déjà voodoo? You know, where you’d think you’ve written about a topic so many times by now that you could cease having to keep writing about it? Where you’d think you could finally put a pin in it? Yet, somehow, the thing that upsets you so much just keeps creeping up, zombie-like, such that you can’t let it rest?
I owe my subconscious an apology. I mocked it a few days ago for being so far up on its soapbox that it wrote an entire novel in my dreams about the need for internal unity among those of us with chronic physical, mental or developmental disabilities. I laughed because I’d written multiple blog posts on the topic already, and shouldn’t that be enough?
I should have understood that my chronically traumatized brain is so obsessed with the topic because it knows firsthand from too many years of experience what my heart doesn’t quite know how to accept: people don’t change. People will always seek to protect themselves first by selling others out. Or, at least most will. So, I’ll probably be writing about why that doesn’t work and desperately trying to appeal to the better angels of the blogger community for the rest of my blogging days.
I read another déjà voodoo blog post just now. This time it wasn’t dysautonomia vs. anxiety or PTSD vs. “true” mental illness. In this one, the author felt that the only way to express how life-altering it is to have ASD was to compare it to how life-altering it isn’t to have ADHD. The only way to gain acceptance for one type of neurodiversity was at the expense of another. The author stated their opinion that ADHD – while technically a form of neurodiversity – barely qualified for the category because it was simply an “accessory” diagnosis that could be “practically nullified” by treatment. (Yes, those were their chosen words.)
Thanks for “practically nullifying” my entire life, there, author, based simply upon your opinion rather than medical authority. I’m as well-treated for my severe ADHD as I can be with current pharmaceutical knowledge, and I am absolutely still socially isolated, constantly struggling at work and home, and bullied and harassed because of my very apparent non-neuro-typicality. If ADHD were that easy to “nullify”, I’d have done so by now. It isn’t. I know, because I have tried. Being neurodiverse in a neurotypical world sucks, no matter the exact diagnosis.
The author also made specious claims that ADHD – unlike ASD – does not include any social defects, hyperfocus/hyperfixation or special interests, sensory issues, or use of stimming in its presentation. Yes, it does. I know that because one of my particular special interests is learning the current state of medical knowledge of my own diagnoses from actual research journals. I have spent the last hour hyperfocusing on collecting links to articles from many respectable journals and publically accessible case studies refuting each of those claims. My computer desktop is in a state of even more chaos than usual with all those saved articles. I can and will bury anyone who doubts that those elements are commonly expressed in ADHD under my mountain of citations (and maybe my piles of general chaos that are all over my desk because of my ADHD, to boot.) I will also remind my readers that ADHD is known for intense emotions, and I am absolutely intensely emotional about countering the damage that stigma from ignorant posts perpetuates about ADHD!
I’m this upset not because I want to instead claim my “severe” ADHD is, somehow, worse than someone else’s “higher-functioning” (another term I hate) something else. I’m this upset because qualifiers shouldn’t matter at all. I have no more right to nullify someone else’s experience than that author had the right to nullify mine, even if I could probably win it on citation count alone if it came to it. I just want us all to finally stick together and stop internally marginalizing.
I collected dozens of articles demonstrating the falsity of that author’s claims – instead of trying to sleep as I should – because I’ve been subjected to years of abuse by people who used my non-neurotypical behaviors as justification that I deserved it. I’ve seen the same done to those with ASD and a host of other diagnoses in multiple horrible “care” situations. Hell, I’ve seen just about every kind of abuse of the disabled that can be perpetrated by this point. The 9th Circle of Hell would win any “abuse of the disabled” bingo game you could write. Their specific diagnoses never saved any of the victims. Healthy, neurotypical and all-around societally “normative” abusers will hurt anyone who doesn’t fit their definition of “normal.” The vast majority of my audience and of the audience of pretty much any blog about neurodiversity of any type wouldn’t fit that definition. In the abusive environments I’ve dealt with, everyone has suffered the same. Why, then, do we try to deflect that suffering disproportionately onto each other in futile attempts to win the loyalty of asshats who were never going to afford it to any of us? We will all hang together or we will all hang separately.
So, to that author and to anyone else advocating for their own situation by selling out other groups that don’t fit the norm: it doesn’t work. To anyone writing words that make it easier to deny basic care, autonomy, dignity, choice and right of inclusion to any group with any diagnosis under the broader umbrella of disability, may I remind you of a poem:
Read that poem. Then read it again, re-written with “borderline personality disorder,” “Lyme disease,” “chronic fatigue syndrome,” “ADHD,” “schizophrenia” or whatever other diagnoses you were considering claiming weren’t worthy of equal concern and decency as your own situation. Go watch the travesties that Netflix has been putting out lately, including Afflicted and Take Your Pills, then go read the moving posts written by those who were lied to and falsely portrayed during the making of those travesties. Read the news articles about the upticks in discrimination resulting from the singling out of those labeled by such docu-dramas, whose “made-up” diagnoses render them undeserving of compassion. Remember my trauma history and that poem you just re-wrote above. Then, finally, remember to include your own diagnosis – whatever it may be – as the last line in that re-written poem.
If you don’t speak out for all spoonies when others marginalize them, then remember that when the abusers get around to you, there will be no one left to speak out for you. The abusers certainly won’t speak for you. Put your pen down before you write another post that further marginalizes other already marginalized groups, and allow within-community stigmatizing to go to the final rest that it has been so long denied.
Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.
9 thoughts on “Déjà Voodoo”
I agree. There’s not a hierarchy of diagnosis, and it shouldn’t be a competition. We’re far better off uniting to fight the stigma inherent in things like Take Your Pills. The more divided we are within the neurodiverse/mental illness community, the worse off we all are.
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Wow, well done! Firstly, I think you’re right with the whole subconscious thing and how underneath we can still ruminate and need to deal with it. Secondly, that writer serious said it was an ‘accessory’ and the whole ‘nullified’ by treatment thing too? Godsmacking really…!! x
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Yes!! What a thoughtless post. I’m sorry this happened. Being invalidated hurts profoundly and is infuriating. I’m relieved others understand my struggles from their own lives and dx. It’s probably the most significant source of comfort and support I’ve found. Not sharing the same labels is icing on the cake because I also learn so much in sharing and surviving among people who are also marginalized by our sociopathic society.
I love our community. I don’t think I could do it in isolation from others who honestly get it. I tend to think of all neurodiverse, ill, and disabled people (etc.) as my tribe because I can communicate with them more easily. We’re more likely to engage with one another than the abled, who are often too impatient and unwilling. Thank goodness, or I’d be incredibly lonely.
I have little tolerance for those who choose not to see past the end of their nose, though. Their choice is incompatible on a planet with 7 billion other noses. I hope the universe teaches the cruel blogger about compassion. And Google. 💜💜🙃
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Thank you so much for this wonderfully worded piece. Struggling with many different disorders and Illnesses myself , i have found that because I don’t always require a wheelchair or that I can have a good hour or two per week and that’s when they will see me.. invisible illnesses are so real and valid , and are as « invisible » as any disease that we have the tools to diagnose, and PTSD/ADHD/DEpression do show up on brain scans from MRIs so there’s is medical concrete proof just like blood levels in a diabetic, it’s still commonly seen as « in our heads ».
Also, I think a good term for what you explained is the oppression olympics. People who always have to have it worse and will try to one up you on illnesses or negative situations , when the reality is having either chronic disability is life altering.
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I’ve been thinking about it, and I think I also react so strongly to any ranking of negative experiences because I still too often play the “oppression Olympics” in my own mind about all the terrible things that have happened within my family. I have a trauma history, and I have multiple chronic physical and mental illnesses. But, I also wrote a post once about how I’m just the “lab rat” in all ways for my sibling, who has experienced *worse* trauma, *more severe* physical expressions of the same chronic illnesses I have, and then is non-verbal on top of that. In the face of just about everything horrible that can *ever* happen seeming to happen to him – and my continuing guilt that I am not a better “protector,” even though I have no idea what anyone could do when systemic abuse runs that deep – I spent most of my life blocking out that *anything* was non-neurotypical, or physically painful, or traumatic, about my own life. I was (am?) a master at blocking things that would justify that my experiences are real and warrant being talked about because, after all, how could I dare claim a right to talk about my experiences when someone else had it so much worse? (Oh, and I probably failed to protect him, and thus am the reason he did. Survivor’s shame is pervasive.)
I denied myself the right to acknowledge my own character arc in the global tragedy that is the 9th Circle of Hell for most of my life, so as I start to try to own my own story I vacillate between absolute fury if it seems like someone else with my same diagnoses is being marginalized – because I know just how debilitating those diagnoses *are* – but then simultaneously still hating myself for seeking care for my own diagnoses because the medical profession so often refuses that same care to someone who has it worse.
Your comment reminded me also that we shouldn’t use the “oppression Olympics” against *ourselves* any more than we should against *anyone else*. It’s totally not cool to justify that our experiences deserve *more* attention because they were worse than someone else’s. And, it’s *equally not okay* to continuously tell ourselves that they deserve *less* by compassion.
I suspect there is someone out there reading this blog post and using it as self-justification that they can’t say *anything* about their experiences because they are taking the idea of “all trauma” and “all pain” is valid as true – for everyone *but* them. We are so often our own worst enemies that way.
So, just in case anyone needs to also explicitly hear the counter to that argument: it’s okay to say you *are* suffering, even if in your mental “oppression Olympics” your situation doesn’t seem that bad. The whole point of not creating hierarchies is so that *everyone* has a voice and nobody is ever silenced – especially that nobody ever silences *themselves.* 🙂
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For the first time, I actually have some good news to report about countering stigma! When I wrote to Dysautonomia International and told them that language like “POTS patients are often misdiagnosed as having anxiety or panic disorder, *but their symptoms are real*” was offensive, I received no reply. I have been seeing that meme about “PTSD isn’t a mental illness” spreading across the blogosphere and morphing into additional, related versions on Pinterest. They keep popping up on my feed faster than I can click the “don’t show me this” button.
But, for this ADHD particular post, there is a happier resolution. The author of the post contacted me on my blog email and said that she had re-read her post and could see in hindsight why it was so hurtful and triggering. She apologized and said she had taken the post down and would be thoughtful in the future about avoiding internal stigma.
As my Partner says, abusers *never* apologize. So, when someone does, I’m willing to accept it. People make mistakes, and it takes strength to learn from them. I will probably eventually say something unintentionally upsetting on this blog in the future, too. (I have ADHD, after all, and we’re known for Foot in Mouth Disease!) I hope the fact that I’ll also apologize if (when?) I do will hopefully be what shows my character. Thus, I’ll take it as a sign of that other author’s character that she apologized as well.
Plus, my subconscious wants me to actually make a change in the world, and that means not just staying angry for angry’s sake but actually reaching out a hand to anyone willing to take it. The bully-in-my-brain tells me that a lifetime of “failure” means I never will make any true changes – especially not in the 9th Circle of Hell – so it’s nice to be able to go tell it to take a long walk off a short pier for once. Something I wrote *did* lead to positive change. That is nice to know given how many times this summer the weight of all the trauma in this country and in my life right now has just been too much to know how to have the will to keep fighting what so often feels like a losing battle.