Messages in a Bottle #13: Placebo Effects

lol - so true of periodic paralysis I Could Use A Standing Ovation, Could You? The Journey of An Anxious Girl: that's a pain in my ass
<Image Text>: Doctor says to patient, “You have an extremely rare, hard-to-treat disease. Are you trying to make me look bad?”

I bought pink Himalayan salt pills today instead of my usual generic salt capsales. I know some people think the “highest amount of trace minerals of any salt” are independently useful, but my default assumption is still that salt is salt. I have a scientific image to maintain at all costs, after all. My conception of myself as intelligent largely depends upon carefully managing my own treatment in line with medical guidelines gleaned from published peer-reviewed sources with a preponderance of evidence, etc. etc. etc.

I’ve been called stupid plenty of times in my pre-ADHD-diagnosis days, so even though I have an excellent track record of identifying what is going on with me and my sibling – even when the medical establishment itself is befuddled – I have only ever learned to (mostly) trust myself because I can always cite my sources. It isn’t just me claiming something is true, it’s “the literature.” The bully-in-my-brain is far harsher than any true academic peer review I’ve ever received. I can’t point to a pile of studies that suggest that one type of salt is better for dysautonomia regulation than another, so thus it isn’t. It could be the greatest thing, since, well, normal salt, and I would remain a skeptic until there’s been at least one meta-analysis.

I’m not buying the pink stuff because I think it will work better; I’m buying the pink stuff because I’m hoping it will taste better. I have heard from numerous qualitative narrative sources with “lived experience” (aka Facebook groups) that it tastes better, or, at least, that it comes with a better pill coating that makes it taste less like anything. Even after two years of taking salt pills, I still gag a little three times daily when I take my prescribed grams of salt daily for dysautonomia. I know there are white salt pills out there that are so well-designed that they truly do taste like nothing. In a world where science can design “burpless” non-odorous fish oil tablets, simply masking the taste of pure salt isn’t an intractable user-design challenge. But, those resulting fancy “sports performance” salt pills are almost twice the cost of simple salt pills. Since I take half a dozen of them daily, that cost differential adds up.
Today, though, Amazon had a sale that reduced the cost of pink salt pills with an external pill coating to the same as the uncoated white salt pills that I normally buy. I jumped on it. Even for a month, it would be nice not to have to choke down the taste of pure salt in the morning. (If you don’t have dysautonomia, grab your salt shaker and shake it into your mouth immediately upon waking up. That should give you a sense of why taking my morning uncoated pure salt pills remains so unappealing even years later!)

I readily admit that this sale could set a dangerous precendent as – after a month of potentially not gagging a little three times daily – I might not have the willpower to return to the cheaper stuff. I still suspect that even if I do end up shelling out more regularly for pink Himalayan salt tabs, it will still be because of my taste preference, not because some salt is better than other salt. I have that self image to maintain, after all.

I could be wrong though. I have an excellent track record of identifying my own symptoms once they rise to the level of being so intrusive I can’t ignore them anymore. I can be fairly oblivious to sub-threshold issues. This morning’s purchase reminded me of one of those times when I convinced myself I was falling for the placebo effect, but I had accidentally stumbled onto a real medical issue that benefitted me to treat but would probably never have risen to the surface if not for my own ADHD inattentiveness.

This week’s Message in a Bottle is the story of how I accidentally empirically detemined that I was deficient in zinc simply because I failed to plan ahead. I wrote up the experience in a post that I originally intended for my nascent blog in 2017, but by the time I actually got the zinc test that confirmed I was deficient, I had forgotten about it. Any memory that I had ever written that post remained lost to the far corners of my brain – though I do take zinc and get my levels checked every six months – until this morning. It’s a bit of a mistake to claim that there is no filing system within the ADHD brain. If there wasn’t, I’d never have been able to retrieve the memory in response to any reminder at all. It’s more like…there’s a poorly designed filing system based on quixotic semantic associations that change every few months.

I couldn’t retrieve the appropriate filing index for “I once wrote a blog post about wondering if I had zinc deficiency” when I was tested for zinc deficiency. That would be too simple. I could retrieve that post after buying pink Himalayan salt pills this morning because the index was actually tied to the semantic category of “all the things in the world that might cause placebo effects.”

Also, for anyone wondering, yes, there have been a few published studies suggesting that zinc can mitigate some ADHD symptoms in those with measurable deficiencies. But, its effectiveness seems to be limited to symptoms of hyperactivity and impulsiveness. Thus, zinc itself is probably not ever going to help me remember whether or not I have written any posts about zinc deficiences. However, paradoxically, having my rather “unique” mental filing system and network of semantic associations has actually been one of the most beneficial aspects of having ADHD for me as a scientist. While everyone else is thinking “B” when “A” is mentioned, I’m usually the one activating “X, Y, Z” and going “but, umm, what if it was actually this…” (Also the one going “I need to zinc think about this for a moment” because once I realize what they might be missing, I also realize what I might be missing, too!)

Continue reading “Messages in a Bottle #13: Placebo Effects”

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Messages in a Bottle #8: The Right to Say “I’m Sorry”

animals_misunderstood
Image: Lyrics from The Animals “Don’t Let Me Be Misunderstood.” Full song playable on Youtube here.

On three separate occasions recently, I have found myself writing about apologies. I wrote about how my Partner always apologizes for hurting me in an argument – even when we have both said hurtful things – because he knows that wasn’t something I ever heard growing up. Then I wrote in another post how abusers never truly apologize. (Saying “I’m sorry you took it that way” doesn’t count!) Never receiving a true apology – even when I begged for anyone to understand just how badly I was hurting – is part of my personal abuse history. Heck, it’s part of my abuse present. I haven’t yet met an official from the 9th Circle of Hell who gives a damn about the hurt that has been done to my sibling and to those of us who have to deal with the guilt of not having been able to stop it. I’ve only met abusers, bullies, and officials who wanted to sweep the issue under the rug as quickly as possible.

But, there’s another side to talking about apologies that I haven’t written about until now. I haven’t written about how I was never allowed to truly apologize. I made mistakes as a kid – of course, I was a lonely, neurodiverse, traumatized kid – and I learned early on to respond to others using all my weak spots against me by trying to do the same to them before they could hurt me first. If someone had shown they’d go for my jugular, I tried to go for theirs first. (Spoiler alert: it’s actually virtually impossible to truly hurt those who are willing to do that to you, so it never did much good.) I’ve also said stupid, impulsive things just because I have ADHD, I’m hyperactive, and rejection sensitivity hurts like Hell. I’ve responded to my Partner like he was part of my past because arguing itself made me forget my present.

My current therapist would say that I didn’t really need to blame myself for the hurtful things I said to people who had a history of saying hurtful things to me, especially when there were rather large age differences and power dynamic differences. But, when I truly decided I did not want to recapitulate my own family dynamics in another generation, it felt like I had to at least try to reach out my hands. It felt like maybe the first one to show vulnerability could make the change. We were a family broken by The System, and, thus, maybe – since we hurt each other because outsiders had hurt us first – we could find our way to healing once we understood trauma dynamics.

Another spoiler alert: showing vulnerability just made going for my jugular easier. It just opened me up to another long list of all the ways I’d screwed up over the years – dating back to age 6 at least – and how all of my failings justified anything that “might” ever have happened to me. Maybe vulnerability might have worked with one family member who is no longer with us (or maybe not) – I’ll never know – but it didn’t work with one with whom I tried it.

I’ve never received a genuine apology while growing up, but I also was never given the chance to offer one, either. I wrote in a previous post about how I was upset and triggered by some things another blogger wrote about ADHD. It hit me in a lot of the “it’s okay to hurt you because you should be normal but aren’t and it’s your choice” abuse buttons. That blogger apologized. She broke the cycle. She saw that I was upset, and she cared enough to write. That really was enough for me.

I also know the legacy of my past is that – even if I try to no longer allow others to hold past mistakes for which I’ve attempted to make amends over me – I’ll hold mistakes over myself forever anyway.

I’ve written a lot about fighting internal stigma within the chronic physical, mental, or developmental illness communities, but I initially forgot to include the most important caveat when we do so:

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. 

That’s ironic, given that the very earliest journal entry I ever wrote was about the right to be forgiven. It’s likely naive and dangerous to forgive those who hurt us intentionally – they’ll take it as permission to keep doing it – but it’s cruel not to forgive those who hurt us unintentionally. It risks making us into the voice of the bully-in-someone-else’s brain. I wrote in my earliest journal entry how I didn’t want to ever be that again. My subconscious thus thinks that I should post that earliest entry to make sure that I’m always truly keeping myself honest to advocating for calling out stigma in a way that opens arms, not closes fists, since I know too well how easy it is to wield a litany of past mistakes against yourself for years.

The Messages in a Bottle blog post below is the very first homework I ever completed in my leather-bound journal in my very first twelve-week CBT course at student mental health services. It is the earliest Messages in a Bottle I will ever post unless, by some miracle, I find something buried on Dropbox that has survived transfer across literally every external hard drive in every state in which I have ever lived.

The song is by The Animals. There are a couple of their songs that hold personal meaning for me. Maybe I’ll write about the others eventually, but, per my notes, this is the one I was listening to when I wrote this first entry that I have never actually shown anyone until now.

Continue reading “Messages in a Bottle #8: The Right to Say “I’m Sorry””

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.)

Continue reading “Déjà Voodoo”

Fully Reversing My (Claim to) Mental Illness?

Do these two Pinterest pins seem equivalent to you?

I’m going to ignore for a moment the implication by a UK PTSD charity that PTSD is “fully reversible” with CBT and EMDR. I’ve tried both, and I’m still waiting for that reversal. (Of course, given how many unique traumas the 9th Circle of Hell as dumped on my brain, including these past two months, how would I know if one ’bout’ of PTSD had ever cleared up before another re-inserted itself?!)

I want to point out, instead, the claim on the left that “PTSD is NOT a Mental Illness.”

I’d like to claim I’ve been doing something really productive with my not-FMLA. However, all I did Thursday was be kept up all night by nightmares preceding my most recent meeting with 9th Circle of Hell officials, then crash out after it and sleep for 15 hours. Apparently, my body thinks that “self-care” means hours of watching non-triggering reality television (think shows like Naked and Afraid where survivalists pit themselves against the elements or Wicked Tuna, where fishermen pit themselves against fish) and staring robotically at Pinterest at 3am when that reality television has been replaced by infomercials. My body thinks that “self-care” means not sleeping, then sleeping long enough to try and recoup six months of spoons at once after physical distress overwhelms mental distress. Would that spoons worked that way, body…

Pinterest really wants me to pin both images above. They keep showing up in my feed. I don’t have a particular problem with the image on the right. (I did read once that Healthy Place promotes some pseudo-scientific claims alongside their generally sensitive memes, though, so I’m still careful about anything they produce.) I do have a problem with the image on the left. Isn’t PTSD just mental illness resulting from self-protective mechanisms persisting so long after psychological (and physical, emotional, sexual and bullying, too!) abuse until they ultimately become maladaptive?

The definition of mental illness is a set of health conditions involving changes in emotion, thinking or behavior that cause distress and difficulties in functioning for an individual. While dissociation has occasionally been neuroprotective during the worst abuse, I haven’t found that being unable to speak while my boss yells at me as I watch the encounter from outside my body to be anything other than “distressing.” I also have yet to see how nightmares are a viable part of any coping strategy – even a maladaptive one – even during periods of active abuse. Abuse and the covering up of abuse have resulted in most-likely permanent changes to my brain that cause me significant distress and difficulties in functioning. That sounds like mental illness to me.

While I deeply hate that other people caused those changes by being abusive assholes (especially abusive assholes that have, too often, gotten away with it), I don’t see how the fact my brain changes were done to me somehow makes me superior to someone who is distressed and impaired in their functioning by endogenous Generalized Anxiety Disorder or Major Depressive Disorder. I don’t see how the fact that PTSD is, by definition, exogenous spares it from being a mental illness. The fact that advocacy groups would try so hard to suggest it does spare it gives off an unpleasant whiff of mental illness stigma. What is the purpose of going to great artistic lengths to convince others that PTSD isn’t a mental illness other than to distance it from that a thing that is somehow lesser, namely mental illness?

Continue reading “Fully Reversing My (Claim to) Mental Illness?”