Déjà Voodoo

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.)

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Eye Rate

Ehlers-Danlos is a systemic disorder. That clearly means it can affect any part of our body that either has collagen or relies on collagen. This is rather unfortunate, given that about 30% of the raw protein content in our bodies is made up of collagen. Collagen is in everything: our stomachs, our skin, our ligaments, our muscles, our blood vessels, and even in our hair. While I don’t think this quite means we can literally say our hair hurts, it does seem to mean we can literally tear our hair out over it. I somehow manage to both grow ridiculously thick hair and lose so much of it that my Partner claims he could build another me from what gets stuck in our drain catcher. Others lose as much as I do, but without the thickness to begin with. They get to deal with visible hair loss as a result.

Another place that collagen is found is in the eyes. My family’s genetically atrocious vision and need for prism in our glasses are quite likely manifestations of EDS. I learned this the hard way this week.

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Data Minding

I first intended to post about the fact that statistical algorithms can pick out individuals with various mental health diagnoses from the type of language they use on social media last November, but I lost my hyperfocus on the topic almost immediately after I read the original media blurb about a new study. I also forgot to ever read the study itself, which was sad because it should have been right up my alley. (In my defense, I was probably exhausted at the time. I usually am.)

I suppose in hindsight there was nothing stopping me from writing the post after November – when I finally remembered it existed – but I’d have felt like a failure as a blogger. I mean, aren’t bloggers supposed to produce semi-current content for their readers? I’d also hate to disappoint any of my readers who might be statistical outliers, but apparently statistical algorithms can also pick that out.  At least online, I’m not the only one with the attention span of a gnat. Articles over a month old are ancient in the blogosphere. Got to play to my audience and pretend I’m aware of the passing of time.

I truly thought my chance had come and gone. I could have cried with relief when another article came out this month referencing similar research about the language used by individuals with mental health diagnoses on social media. Sometimes I do get a second chance to make a first impression. (I will confess my own self-regulation of my own science ideals vs. science practice hasn’t improved since November. I haven’t read the original research cited in this new article, either.)

I managed to get a timely post up, and I know that – this time- I won’t disappoint my readers. I posted extremely relevant content and I intentionally set myself up to succeed…

…by failing forward. I mean, after all, I did just manage to write the most statistically obnoxious – I mean “optimal” – example ever of a social media post by someone with ADHD above. It should trigger as many automated flags as possible during data mining that I truly have the diagnosis that I know I have. I was, however, only diagnosed in adulthood.

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Messages in a Bottle #1: Ghosts of Christmas Past

Journaling just for myself has never felt like self-care. The bully-in-my-brain sees it as indulgent and self-justifying, and it has never felt satisfying to write anything creative that only my eyes would see. Plus, I find ways to hate anything creative that I write. I’m a much harsher critic than the Internet. I gave up officially journaling for therapy after my first-ever 12-week course of CBT. Student Mental Health Services shoved me into standard short-term CBT way back during my PhD because it was easier for them than their therapists digging deeper to discover that my classic anxiety and depression were side effects of less-common ADHD and C-PTSD.

I gave up CBT after that first generic catch-all course in favor of more somatic-based therapies, which I researched for myself. However, because I really did have ADHD even when undiagnosed, I initially threw myself into CBT with hyperfocus intensity for those original twelve weeks. I didn’t often share my answers fully with my therapist, but I at least answered them honestly for myself. My immersion included buying an expensive, leather-bound journal to use to fill out the homework. I filled out about half of the two-hundred-page journal between homework and attempts at personal journaling. I never knew what to do with that journal, because it contained personal thoughts that, for a while, brought me shame. I couldn’t throw it out, and I couldn’t figure out what else I could write in it that could go thematically with answers to therapy questions about my past that I never even showed that CBT student therapist. I just kept it with me.

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Membership BADDges: Identifying ADHD in Girls with Co-morbid Anxiety

It’s rough being an intelligent girl with ADHD. If such a girl is halfway successful, multiple doctors’ 15-minute default assumptions that she merely has anxiety/depression will too often have been the reason she spent most of her twenties ineffectually medicated with SSRIs – and labeled treatment resistant – instead of receiving the medications that will eventually change her life.

Such a girl has probably railed against the gatekeepers that barred her from having a shot at becoming truly successful – not just halfway – for so many irreplaceable years. She probably has become lost in an RSD spiral at least once after scoring off the charts on her ADHD self-assessment and being shot down anyway because she “did okay in high school.”

Such a girl may even have spent the first year after her formal ADHD diagnosis doubting it. She never forgot the doctor who said her difficulties were due to a lack of skills, not a neurological condition. She may have heard the bully-in-her-brain aping that doctor – telling her that she chose a job she “wasn’t good at” – for quite some time before she learned to trust her lifetime of ADHD experience over an ignorant GP.

If she has learned to trust in diagnostic criteria over doubt, she may become incandescent with rage when she sees other smart girls in Facebook groups and on WordPress being treated the way she once was treated. She may start to write an angry blog post after thinking back on what it was like to be told that she “didn’t need ADHD medications to solve her problems” – she just needed to choose a job within her “realistic personal capabilities.” She may instead realize that diagnostic criteria and angry rants wouldn’t necessarily have helped her in her own diagnosis journey. They wouldn’t necessarily have penetrated the fog of self-flagellation at the time.

She might then wonder what would have helped her feel more confident that she really did have a neurological condition back in her undiagnosed twenties. One thing that would have helped would have been to know that the “ADHD” versus “anxiety/depression” dichotomy is a false one. If a smart girl has ADHD, she most likely has anxiety and/or depression, too. It would have further helped her to have learned how to recognize her ADHD lurking behind her anxiety. It would have helped her to recognize her shibboleths: little traits of hers that stem from the diagnostic criteria for ADHD and aren’t as easily confused with other diagnoses as a non-specific criterion like feeling overwhelmed.  It would have helped to have some way to laugh about just how ADHD she was, not internalize the issues.

The following are some of those shibboleths that one such girl, known as Lavender, shared with another smart girl still in the process of being diagnosed. (She has added a few since that original exchange!) They have no formal diagnostic validity as an ADHD screener, but they probably have a fairly high specificity (though maybe not sensitivity!) To use the guide, assign the female subject +1 points for each item as described below. There is no clear-cut diagnostic threshold for ADHD. As in Improv, everything is made up and the points don’t matter. However, if the girl happens to self-identify with a few of these traits, she is more than welcome to an unofficial Membership BADDge, at least in this girl’s book.

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Wheres’s Whoopsie #3/Improv #2: The Empty Canvas is Already Whoopsied

I have an approach/avoidance relationship to mindfulness. Creating an intentionally mindful state is a battle, but hyperfocus, which comes naturally, has trance-like qualities.

The more upsetting recent events have been, the more I have hyperfocused on my labyrinthine coloring book. Can I call it mindful meditation that I completed two posts worth of Where’s Whoopsies in one weekend? Does it help that it was actually soothing?

Or does it no longer count since I derive no comfort from the meditation mantras themselves, just from their repetitive motions? I have only heard one suggested meditation mantra among many that I partially identified with.

“The glass is already broken…”

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Improv #1: Levity is a Ladder

Dealing with people is not easy for girls with the hyperactive flavor of ADHD. We miss social cues, we talk over people, we fidget, we can’t modulate the volume of our voice, we interrupt. We see the complete picture of how to bring a project together, but can’t explain why you should believe us. We do all of these and more in an RSD spiral.

I’ve had some varient of “needs to stop clipping people’s sentence with her own reply” written on every performance evaluation I’ve ever gotten. This was true before dysautonomia, but trying to talk coherently when your blood pressure is 80-something over 50-something during your review doesn’t help. Thank heavens for planned out replies. I had a reasonable review, even though the new diagnosis amped up the challenge rating.

Dysautonomia alone shouldn’t further deteriorate social skills. My history of corporate ridiculousness practically guaranteed it would. My boss set my review for 8am, the earliest possible slot of the whole team. Between dysautonomia and ADHD, mornings are not my most clear-headed. Mornings after a night out “bonding” didn’t help. (We were on retreat at a hotel with corporate meeting rooms.) The others drank. I didn’t, and I left at a sensible time. However, even those few extra hours of socializing apparently were too much for dysautonomia. ADHD is socially awkward, but dysautonomia is just asocial.

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POTSies Against Nazis

I have a colorful new diagnosis. (I also have gastritis, probably as a result of being allergic to everything.)

I’m not inflammatory (IBD), but I’m pretty salty. Postural Orthostatic Tachycardia Syndrome (POTS) is a type of dysautonomia officially characterized by a heart rate increase of at least thirty bpm upon standing. This tachycardia is often associated with a drop in blood pressure (orthostatic hypotension), though clinically OH warrants its own additional dysautonomia diagnosis. There are multiple types of dysautonomia. I seem to be able to catch ’em all.

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Entrepreneurial Hyperfocus’s Mirror Image

Silicon Valley seems to have a bizarre love/hate relationship with ADHD. On the one hand, it celebrates many of the ADHD quirks. I’ve been to more meetings inspired by Ted Talks, Malcolm Gladwell or some other Silicon Valley golden child in my own organization in the past two years than I can count. Seeing pipe cleaner art, crayons, and even fidget toys at team meetings has become commonplace. I love that aspect of MBA-speak. I also shrug my shoulders and wonder what Silicon Valley thinks ADHD is, exactly. Open offices, for example, are not something I, as one of those “creative geniuses” with ADHD, can understand. I’m guessing the person who invented open offices does not have ADHD. If I ever find the person who invented open offices, I will force them to endure a death metal concert held on an airline tarmac. That is the only way I can think of to describe what an open office feels like to someone with actual ADHD, and its associated sensory overstimulation.

Silicon Valley’s love of the idea of ADHD seems to be inspired largely by the so-called ADHD superpower: hyperfocus. Before I got the idea to start this blog, I wrote a very long, frenetic email about why hyperfocus can actually suck that I almost sent to a friend when she showed me an article about how entrepreneurs have ADHD-like traits.

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