Hey Dysautonomia International: My anxiety is only “all in my head” because that’s where my brain is!

I had a dream last night that I was in high school again. That’s never a great start to any day, so I’ll blame that for the fact that I woke up on the wrong side of the bed this morning. I’ll blame that, work, and all the usual hassles of my diagnoses, but I’ll write this semi-ranting post anyway because I also partly blame Dysautonomia International.

In my dream, one of my friends in high school was trying to convince me to partake in her stash of alcohol. I wasn’t a huge party girl in high school, but I did occasionally drink at her parties. In my dream, I tried to explain to her that going to the party had used up all my spoons for the day. Drinking wasn’t an option. She replied that depression, which is all I was diagnosed with at that point, didn’t count for Spoon Theory. It wasn’t a chronic illness: chronic illness only includes the physical! Then I woke up.

I got on Facebook to see what that friend was up to now. Her attitude in my dream was purely the bully-in-my-brain’s invention. She is still – as far as I can tell – a bit of a high-lifer. She is/was also a lovely person. While on Facebook, I saw another friend posting about her difficulties completing day-to-day tasks during a bout of depression. She referenced Spoon Theory, and someone in the comments stated that she has the physical capability to leave the house and, thus, shouldn’t appropriate Spoon Theory. It sucks that her mind wouldn’t let her leave the house, but she could leave if there was a fire. My more-aware-of-social-concepts partner explained to me that appearing to show concern for someone on the Internet – but putting someone down in the process – is called concern trolling.

When I first learned about Spoon Theory, as I mentioned, I was only diagnosed with depression. I didn’t even know yet that I had ADHD! I thought I knew, though, that Spoon Theory fit what I now know to be the ADHD/PTSD/anxiety experience.

Looking back, I probably have had some form of autonomic nervous system dysfunction much longer than it has made me faint regularly. I remember going to the urgent care for acute sickness as a teen and being asked if I was anxious because my heart rate was very high. (I only get panicked at doctors’ offices if it looks like someone won’t believe me. Regular illness is apparent, and I have always been quite calm during routine care.) I remember having to give up being a volunteer at the annual NAMI Walks because the climate was changing. It had regularly become so hot in October that people thought I was going to pass out under the tent! I remember looking at engagement rings with a friend to give her now-husband ideas and wondering why my fingers would swell up and markedly change my ring size on different days, while hers was nice and stable.

Maybe I had less severe autonomic dysfunction back in my twenties, but that didn’t explain why I felt Spoon Theory applied to me. It was simply because ADHD, PTSD, depression, anxiety and other developmental disorders and/or mental illness are exhausting all by themselves! They cost spoons, all on their own. Each diagnosis I have received has progressively decreased my average daily spoon count, and there has been no distinction between the “physical” ones and the “mental” ones. I wanted to join an online forum (am I showing my age here?) for chronic illness when I first learned about Spoon Theory.

Unfortunately, around 2010, the front page of that forum included the note that it was only for chronic physical illnesses. The logic was the same as that Facebook comment, “a person with mental illness could function if they needed to, while we can’t.” I remember feeling truly ashamed of myself at that point. Who was I to deserve to use Spoon Theory, when I could function if I just wanted it enough?

Although people still need to counter stigma about mental illness in the wider spoonie community in 2017, I think the idea of mental illness as a biologically based disease is more widely accepted by the spoonie community? Should I assume that my dream means I am a) psychically linked to my friend on Facebook or b) wrong about how pervasive the myth that those with mental illness aren’t spoonies remains?

Neither, I think. I think my dream was the bully-in-my-brain’s self-disparaging response to a much subtler form of the same old false dichotomy. I have been seeing this new version a lot online this month. October is Dysautonomia Awareness Month. I’ve been reading a lot of messaging making people aware that dysautonomia sucks. It does suck. I identify with these personal stories of how much it sucks.

What I don’t identify with is how Dysautonomia International – and thus too many of the dysautonomia sufferers who look to them for proper awareness messaging – are justifying dysautonomia by putting down anxiety. They seem to think that they can best advocate for dysautonomia by continuously reminding folks that, “research has shown that POTS patients are similarly or even less likely to suffer from anxiety or panic disorder than the general public.” Or, even better, “POTS patients are often misdiagnosed as having anxiety or panic disorder, but their symptoms are real [emphasis my own] and can severely limit a person’s ability to function.” (That quote is from the same link as the last one, further down the page.) This version has appeared on multiple memes, and we all know memes only further reinforce the implicit stereotype that anxiety isn’t real.

I know enough about how the public interprets statistics to know that, for most people, even the official, cited, line in regular use in Dysautonomia International’s messaging is too often the equivalent of the meme. I am cynical enough – I work in public health and see how marketing shapes statistics – to wonder if Dysautonomia International knows how their statement is likely be interpreted by the public. Are they okay with building their awareness campaign on still-pervasive stereotypes about mental illness? I hope not, but I do wonder. The anxiety statistic may have research support, but why is that the way we must advocate for dysautonomia? Isn’t it enough to state that research has proven repeatedly that dysautonomia is real and requires diagnosis and treatment? Do we really need to constantly elevate ourselves above lesser spoonies who merely have anxiety? Isn’t that implying that we’re not messed up like they are because dysautonomia isn’t all in our heads?

Can I even use we in solidarity with Dysautonomia International? After all, I’m one of those dysautonomia patients who does have anxiety! Is my dysautonomia clubhouse pass revoked?

I recognize in my own symptoms that there is no correlation between my anxiety and my dysautonomia. In the same way my heart usually races while I’m calm, I can also sometimes have an emotional flashback and my misbehaving nervous system will be off on its own meandering through bradycardia. Why? Because Dysautonomia International is correct that anxiety and dysautonomia are not caused by the same biological processes. However, I have both, and I feel unwelcome when the major advocacy group for one of my illnesses makes me feel like I don’t belong because of another.

I can talk about my dysautonomia without thinking about my ADHD, PTSD or anxiety. I can be aware of multiple diagnoses without comparing them. Why can’t Dysautonomia International? Why do they have to mention anxiety in the same breath as “but their symptoms are real?” Didn’t they get the memo that anxiety is only “all in our heads” because that’s where our brains are, too!?

Please don’t concern troll one of my illnesses, Dysautonomia International, to gain me empathy for another. That $h17 just becomes yet another way to stigmatize and degrade my fellow spoonies who have mental illness alone – which is plenty!

I have felt and experienced indescribable relief when doctors finally believed me. After all, I diagnosed myself with dysautonomia before any of my doctors. Self-diagnosis and self-advocacy were the only reason I obtained my tilt table test and an official diagnosis within nine months of when I first sought medical help. I have no doubt that if I hadn’t demanded the initial Active Stand Test that ultimately led to no-less-than-four-doctors independently confirming my diagnosis, that I’d have been one of those waiting six years for what ended up being a fifteen-minute diagnosis.

I apologize, though, if in the process of expressing my relief at being taken seriously by doctors for my chronic illness I have ever unintentionally suggested to my readers that I think I only deserve to use the spoonie label because I also have a chronic physical illness. I doubt my right to use the spoonie label just as much post-diagnosis as pre-diagnosis. Remember that comment on my friend’s page about how one criterion for using Spoon Theory is the ability to walk out of the house if it is on fire? Well, that makes me wonder if my dysautonomia is severe enough to belong in the community, too. So far, I can still maintain my job, and (most days) I could flee a fire without my partner dragging me. (I might not because I have hyperfocused through disaster alarms, but that’s another thing entirely!)  I also wonder if my migraines are severe enough, my PTSD is severe enough, my anxiety is severe enough, etc.**

I don’t doubt whether depression and anxiety are real, or whether they deserve to be included under the umbrella of Spoon Theory. I only doubt whether I, myself, deserve to be included. I wish Dysautonomia International wouldn’t give the bully-in-my-brain further reason to doubt myself in my dreams. As long as they do, though, they can deal with my anger when I wake up on the wrong side of the bed because of it!

Update: I later wrote them a strongly worded letter after my blog post didn’t make me any less upset. I asked them to please remove offensive language like “but their symptoms are real” comparing dysautonomia to anxiety, and I asked them to please apologize for perpetuating unfair stigmas by having included it in the first place. I said that I’d update this blog post again if they ever responded. They never responded.

(**I didn’t say I doubt my ADHD because I am not doubting it lately! Lately, if I ever doubt whether my ADHD is severe enough, I need only check in with my boss for ten minutes! He continues to gift me with reassurance regularly! Sigh.)

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.

11 thoughts on “Hey Dysautonomia International: My anxiety is only “all in my head” because that’s where my brain is!

  1. I don’t really understand people trying to regulate the spoon theory so it only applies to some illnesses. Yeh, don’t use it if you are able bodied/healthy, but I feel it is the perfect analogy for people with mental illnesses.

    So this is how I understand Dysautonomia International’s statement: a lot of people with dysautonomia and other chronic illnesses are often diagnosed with “health anxiety”, which essentially means an undue focus on your health makes you imagine you have symptoms which actually are not there. So what DI are trying to say is that you aren’t just unnecessarily obsessed with your health or imagining things, you actually do have physical symptoms that are very real. That’s how I interpret it anyway.

    Liked by 2 people

    1. I hope that’s how they mean it, but it still unnecessarily links an already heavily stigmatized condition with something made up. I hope they listen to my email and change the wording so it is doesn’t leave any doubt. I know too many people even among my relatives I could never send that link to, because in the process of trying to convince them dysautonomia is real, I know them well enough to know they’d read it as anxiety isn’t. I’ve spent enough time around people like that that, unfortunately, I see it too. Here’s hoping my sincere expression that that language really hurt me as a dysautonomia patient with mental illness will be a step towards positive change. I’m trying to be the change I want to see in the world!

      Liked by 1 person

  2. I’m going to say something I’m probably going to regret but I’m exhausted and too tired to keep my thoughts to myself.😬 Since the Spoonie terminology is an explanation of energy output available to ANY given person how could anyone have the audacity to hyper-analyze it to say something that ludicrous? I can walk out of my house, fire or not, and I’m also out of spoons in a very short period of time. The two literally don’t relate. Okay rant over. 🙊 sometimes I’m just baffled by people’s inability to be kind to one another. With that I must get to sleep 🤞🏻 … my crabby is showing😁

    Liked by 1 person

    1. In my house, we actually use “spell slots” as our made up equivalent. It’s from D&D, which we both played earlier in our life (did I mention we’re geeks?) Wizards get only so many spell slots per day, but, unlike spoons, not all slots are equal. You need a higher level slot to cast a higher-level spell. You can also have to waste a higher-level slot to cast a lower level spell if you are out of anything else, but need to do something. Thus, you have days where you might be able to take a shower, but not do something as complicated as driving or going to work (you have only first level spell slots left, and work takes a fifth level.) You also have days where you tried to do too much little stuff, and you are stuck deciding if you want to waste a high-level slot to do something silly like shower, if you got a weird allotment of spoons that day. I think we made that analogy up, but it helps explain to others why some tasks take multiple times the number of spoons as other things. Otherwise, I’ve found those with higher numbers of 🥄 don’t get how you can end up with tradeoffs like “I can maybe make myself food tonight, but I can’t even remotely edit this report. I only have 1st-level slots left, and that would take a 5th-level!”


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