So I dipped my toe into Reddit for the first time in a while. (Relapses are always difficult things to deal with.)

On r/Psychiatry thereā€™s a discussion running about Rejection Sensitive Dysphoria and thereā€™s a really interesting spread of opinions. That sub is supposed to be exclusively for qualified psychiatrists, although itā€™s not very well moderated in that regard. Opinions ranged from being in favour, to fairly neutral, to extremely critical of the idea (and of ADHD itself [!!]).

This is what has prompted me to post this State of The Union Disorder Address today.

One thing that barely got any mention in the thread in question is the origins of the concept of, and I think even the term itself, Rejection Sensitive Dysphoria (donā€™t quote me on that part - I could be misremembering). My introduction to the concept of RSD was through scrambling to get myself up to speed on ADHD and absorbing information from Dr Russel Barkley in particular and also Dr William Dodson, two of the leading experts in ADHD (although both of them are kinda old, with Dr Barkley being in retirement by this point). In older talks from both of them, they each outline the emotional dimension of ADHD that get overlooked by the diagnostic criteria and, tbh, the term ADHD itself which doesnā€™t recognise the emotional aspect. I think one day, eventually, we are going to see the label itself shift to recognise that itā€™s a disorder characterised by executive dysfunction and emotional dysregulation rather than hyperactivity (which is sometimes present but often not and sometimes wholly absent, especially as a person matures) and attention deficit (same as above - sometimes absent, sometimes present). Both of these parts of ADHD are, imo, manifestations of poor executive function and Iā€™d argue that itā€™s a dysregulation of executive function moreso than anything - itā€™s extremely common for ADHDers to report experiencing hyperfocus but the problem is in the difficulty in regulation of that focus. This is not necessarily an example of executive dysfunction in the way that itā€™s commonly understood, although the ability to regulate oneā€™s attention ā€œappropriatelyā€ (however you want to define that exactly) does fit into the true definition of the term but I digress.

From memory, Dr Dodson referred to RSD by a different term. It seemed pretty obvious that he was working towards the same conclusion independently that Dr Barkley had also been working towards, and the concept didnā€™t even have a conventionally-accepted label at this point.

As ADHD, and especially adult ADHD, has come into more mainstream acceptance and awareness, there has been a huge amount of peer knowledge and support filling what is honestly a pretty wide chasm of knowledge and understanding of the condition. (I realise Iā€™m part of that phenomenon.) In an ideal world this wouldnā€™t exist, but alas. This has led to what I think is some fundamental misconceptions about ADHD on both sides of the professional/lay person divide, and these definitely emerged in the discussion on the thread.

With regards to professionals, in my opinion, some major misconceptions are:

  • That ADHD is overdiagnosed

  • That it doesnā€™t exist (ugh)

  • That it is just the result of trauma (lookinā€™ at you Gabor MatĆ©)

  • That itā€™s some trendy diagnosis or that itā€™s something that is used as a diversion from people averse to the diagnosis of BPD especially (this definitely came up in the thread)

  • That the emotional dysregulation dimension of ADHD doesnā€™t exist or that itā€™s is simply indicative of a co-occuring mental health condition

  • That RSD is just some tiktok trend that popped into existence out of nowhere

  • That RSD is just social anxiety or a trauma response, or something along these lines

On the other side, some of the misconceptions from lay people are:

  • The glamorising/quirkification of ADHD (no, staring out of the window at work or in class when youā€™re bored is not the same thing as ADHD and nor is impulse buying shit online)

  • That ADHD is just about dopamine/itā€™s just about a lack of dopamine (both are untrue)

  • That ADHD can be ā€œcuredā€

  • That ADHD meds make you a zombie or that everyone responds to stimulants with better attention and so stimulants are just a crutch used by people who lack willpower or discipline

Thereā€™s probably a lot of other misconceptions on behalf of lay people but Iā€™m not going to bore you with all of them - youā€™re probably aware of most of them already anyway.

One thing that stands out to me about all this is that ADHD, ironically, suffers from success - stimulant meds are the absolute envy of the rest of the psychopharmacological industry. (If an antidepressant had the rate of success that stimulant meds do for ADHD, it would be a defining moment in history akin to the advent of lithium in the treatment of bipolar.) What this means is that, for a long time, ADHD was diagnosed in mostly boys, and mostly the ones who exhibited a lot of hyperactivity, and the solution was to throw stimulants at the kid and move on because this would largely be seen to resolve the problem or the external and more disruptive aspects of it. Because of this, thereā€™s a big gap in research into adult ADHD, the underdiagnosis of afabs, and examining what exists beneath the superficial, external observations of ADHD.

Hence where we find ourselves today and why Iā€™m writing this post.

So where does this leave us?

Well, firstly I think thereā€™s a lot of misunderstandings about RSD and incomplete understanding of RSD. (Itā€™s gonna get a whole lot more anecdotal and extrapolation-y from here, so he warned.)

From what the good doctors above describe, itā€™s not really necessarily even rooted in rejection. The term RSD creates a fundamental misunderstanding that the experience is about feeling bad when people reject you or provide you with negative feedback whereas he experience itself is rooted in a very immediate, almost visceral emotional response to perceived mistakes and failures which is completely disproportionate to the situation. This can be something that occurs in a social setting, although not necessarily.

I think a good analogy of what itā€™s like to experience RSD is that it is a frequently occurring emotional response to things that are typically smaller and it feels like that one time in school when you suddenly got called to the principalā€™s office and you had no idea why. Thereā€™s this sudden, gut-wrenching emotional response where you feel like youā€™re in huge amounts of trouble for something and you donā€™t have any idea of what it is. (But then it turns out that, idk, they just wanted to congratulate you on winning some scholarship that you had forgotten about or they wanted to ask if you for some basic information.)

The difference between RSD and a trauma response or serious anxiety is that RSD is felt strongly in the body and it is completely disproportionate to the experience. An attack of anxiety typically has a solid basis in reality, and it is generally fairly quick to resolve when the perceived cause is addressed. Obviously for generalised anxiety disorder and more severe anxiety disorders, this is not necessarily the case but thatā€™s its own discussion. Panic attacks often donā€™t have a particular triggering incident, RSD does.

Trauma responses are ones where your previous experience of a traumatic event is brought into your immediate experience due to some similarities or resemblance to it that occurs in the present - a car backfiring or a door slamming are two good examples. With regards to the difference between a trauma trigger and RSD, a trauma trigger is going to bring you right back to a past feeling when you were traumatised and your responses will be based in that past experience. RSD can fire off from something tiny and it isnā€™t something that dredges up an old traumatic experience for you while transporting you back to that moment in time and what you were thinking and how you were feeling back then.

RSD can kick off from really small things, like feeling as if you forgot to lock your front door this morning or maybe mispronouncing a word in conversation or arriving at an appointment at the right time but on the wrong day. A typical person might worry about their front door and go through the steps they took as they left the house this morning to arrive at the certainty that they did actually lock their door and then things feel okay again. A person with social anxiety might feel really nervous at that mispronunciation and it might really rattle them for quite a while or they might even freeze up or burst out into tears. Someone who finds out that theyā€™ve arrived at their appointment on the wrong day might go beet red and feel extremely embarrassed. Iā€™ve honestly done all of these things and experienced these responses before and RSD feels different.

RSD feels like a gut punch, and it often comes completely unexpectedly. I might often worry about forgetting to lock my door when I leave the house but today, inexplicably, today my response is different.

Itā€™s that feeling when you realise you forgot to send the email and you lost the big contract but thereā€™s nothing you can do because itā€™s already too late by this point, that feeling when you realise you left your purse on the bus and everything in it is gone forever, that feeling when you realise that your partner has been cheating on you and youā€™ve only just put all the pieces together.

Except itā€™s just some tiny little slip-up. Or maybe itā€™s not even a mistake at all but it feels like it might have been one.

As someone who has and is diagnosed with PTSD, RSD genuinely hits different. I have trauma triggers. I have trauma triggers for things that Iā€™m not even aware of the historical source of because of extensive childhood trauma. But itā€™s taken me a really long time to realise that thereā€™s this other, separate phenomenon that I experience which feels similar in a lot of ways and, for me, which had blurred into the ā€œitā€™s just PTSDā€ narrative for the longest time, until I finally started developing my understanding that there was something else going on for me.

So anyway I hope that by rambling about the state of psychiatry, about being irritated by some shitty comments on Reddit (the horror!), and about my own experience of RSD along with the historical roots of the concept Iā€™m helping to fill that gap in understanding and to push back against some of the misconceptions that exist surrounding RSD.

  • Budwig_v_1337hoven [he/him]@hexbear.net
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    5 months ago

    I can talk about how I have managed my own experience of RSD, why I am convinced that it exists, and how I have responded to treating it if anyone is interested.

    please do, Iā€™m very interested. When I first heard about RSD, all the lights went on in my head, it explained so much of my social inhibitions, my reluctance to talk to people and just general anxiety when meeting strangers - especially when I found them interesting in some way. Until then, I thought everyone was deathly afraid of these things and everyone else was just way braver than me.

    Understanding some of these connections has already helped me a lot, but Iā€™m sure youā€™ve got some interesting, more in-depth things to say about it all - if you feel like it, please do elaborate

    • the_itsb [she/her, comrade/them]@hexbear.net
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      5 months ago

      Until then, I thought everyone was deathly afraid of these things and everyone else was just way braver than me.

      aaaaaaahhhhhhhh I relate, so hard

      I think Iā€™ve said something very much like that to somebody and didnā€™t believe them when they said it wasnā€™t true šŸ¤¦šŸ˜‚

    • ReadFanon [any, any]@hexbear.netOP
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      5 months ago

      Sure thing.

      So I experienced a lot of childhood trauma and worked through it as best I could. There are things that still get me but Iā€™m pretty aware of those trauma triggers and Iā€™ve noticed that as I work my way through resolving the trauma, the amount that I get triggered definitely lessens. A lot of things that would wreck me for a day might just have me feeling on edge for the day or even just a couple of hours.

      But then there was this other experience that was very similar to this and I developed an awareness of it being separate to my trauma history and it didnā€™t feel the same to me. Working through the beliefs or feelings or circumstances around what set me off wouldnā€™t lessen the experience the next time around and there wasnā€™t a particular process where it would go: man yelling in a booming voice -> brain identifies this as being too close to what I have experienced that was traumatic -> trauma response and bringing up a lot of associated feelings, memories, narratives etc. Instead it would be these random almost shock-like body experiences as a response to when I fucked up somehow, kinda similar to how it feels when you plunge into icy cold water or you get punched in the solar plexus in how it would feel so immediate and visceral, except sometimes it would happen in response to a situation, sometimes it wouldnā€™t, and there was no obvious common denominator. I wouldnā€™t get the historical emotional or psychological context coming in just before or alongside this experience, although I would associate the experience with other times I had it happen to me prior. I noticed that this would happen after the inital response though.

      I just assumed I was crazy or it was PTSD for a very long time.

      What I found, though, is that getting on the right medication for my ADHD which happened to reduce my emotional reactivity (which I essentially lump into the same category as what the psychiatrists consider ā€œimpulsivityā€ and imo which is rooted in the same inability for the ADHD brain to inhibit an impulse), suddenly the RSD response just dropped off almost like magic. My brain still wants to go there but it is feels a bit like going over a speed bump these days - I notice my psychological response sorta escalating but almost as quickly I crest the top of a very limited shift and then return back to my baseline. This is something that happens in the course of only a couple of seconds at most. I went on this medication to manage the side effects of stimulants and not to treat my RSD, which I was only barely developing an awareness of at this point in time.

      Whatā€™s interesting though is that my trauma response is still there when I take that medication. The ceiling on it has been lowered noticeably, which is really nice, but if Iā€™m around a man who is yelling in a booming voice, for example, I still go through the same old PTSD stuff and my mind dredges up all the old associated psychological content from what Iā€™ve been through in my past.

      So what has worked for me personally to effectively eliminate that RSD response in me has been clonidine. Whatā€™s interesting is that clonidine seems to work for that behavioural inhibition and so this is what leads me to believe that RSD is due to a lack of capacity for behavioural inhibition in ADHDers. Clonidine is fairly short acting and I notice when I am late to taking my dose of it by maybe 2 hours or more that Iā€™m capable of getting a higher RSD response than Iā€™m used to. If I forget my dose that night, the next day I can tell because my RSD tendency starts to return to what it was prior to going on to clonidine.

      In all honesty I think that guanfacine, which is very similar to clonidine, is probably a better first option for most people with RSD because of how it works in the brain. If someone has PTSD though, I think clonidine is probably more useful for a couple of reasons. That being said, different people respond differently to meds so if you do happen to try one and it doesnā€™t work or you have side effects then itā€™s worth trying the other.

      If neither are suitable then my (un)educated guess would be to try out beta blockers such as propranolol next, as these work in a similar way to clonidine and guanfacine so I wouldnā€™t be surprised at all if they were a slightly different route to get to the same destination.

      I also suspect that as the usual ADHD stimulants would help with behavioural inhibition and, if my spitballing and use of my own experience as a guinea pig is correct, it could be expected that they would tend to dampen down the RSD response too but my hunch is that they would tend to be less effective overall (which might be perfectly fine for some people who experience RSD - oftentimes more isnā€™t necessary better with psychiatric meds.)

      I hope thatā€™s useful info. Of course this is way off the beaten path for ADHD and this is basically just me experiencing unusual things in response to meds, furiously researching what the hell is going on, trying to come up with a working hypothesis, and then testing things out on myself to see if Iā€™m right or wrong about my assumptions and repeating this until I seem to have arrived at the right conclusion, at least for my own situation. So this comment is not something that should be considered as being based in hard facts, itā€™s really just a case study with some of my own analysis mixed in.

      • Budwig_v_1337hoven [he/him]@hexbear.net
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        5 months ago

        Very useful, thatā€™s an interesting possible link there - Intuitively, Iā€™d have guessed it the other way around, ie. RSD being a symptom of an excess of inhibition. Gonna let this ferment a bit, maybe come back to it. A heartfelt thanks to you for sharing your experience and hypotheses, itā€™s super helpful - and Iā€™m sure not just - to me