I’ve been dancing around this topic for some time, having mentioned it in more than one place already but always knowing it deserves a place of its own, with a suitably no-frills title. This subject which, to anyone who has dug deeply into the topics of autism or ADHD, as so many self-sleuthing people (especially females?) are now forced to do to get to their own answers, is a topic they will surely have brushed against. Then again, when I first came across it, it was a bolt from the blue and one of those mega-lightbulb moments, far too important to skip over in this blog. Who knows, you may suffer from it yet never have heard of it and, as ever, coming to recognise your own traits is a giant step towards working with them instead of stumbling around blindly.
And though I’m not currently in the throes of its most horrible effects, as ever (as explained in my last post) when I comb back through the hard-won experiences of my life like this, it feels somewhat like harvesting the fruits of so many years of pain to revisit and make sense, perhaps helping others to gain clarity along the way. An apt metaphor, and perhaps a reason I sit down and do so much writing, at this time of the year.
There are a growing number of articles and descriptions of rejection sensitive dysphoria (RSD) to be found on the internet these days though, I would say, those written from a neurotypical viewpoint are not the best resources since they lack real comprehension of how all-encompassing it feels to be inside an episode, plus they tend to contain some inevitable bias, making the trait sound pathological or neurotic compared to the actual flesh-and-blood experience of it. So I’m going to pick a couple of reasonably well worded and, in my opinion, accurate descriptions and quote from those to set the scene here and there and then add some of my own experiences of it.
(This from ADDitude magazine, various articles below) RSD “is one manifestation of emotional dysregulation” that often coincides with ADHD and autism that causes individuals “to feel “unbearable” pain [dysphoria from Greek = “difficult to bear”] as a result of perceived or actual rejection, teasing, or criticism that is not alleviated with cognitive or dialectical behaviour therapy”.
This latter point is such an important one to try and grasp: the person with it has no control over it at all thus it cannot simply be alleviated by talk or other therapies, even medications (there are a couple of drugs that have been used but, being treatments for high blood pressure, these come with associated risks and side effects and are not suitable for all), because it swoops in and takes the person over as an all-encompassing invasion of all their thoughts and entire nervous system. Nobody likes to feel rejected or criticised but to someone with RSD its on a whole other level, whereby the feelings are both restricting and impairing and can get firmly stuck in the body’s systems, amplified and reverberating like a gunshot in an echo chamber.
The effect is to overwhelm both mental and sensory processes simultaneously, experienced as agonising, self-eroding and highly repetitious thoughts plus (often) accompanying visceral pain and systemic breakdown throughout the body as jammed-up, escalating emotions trigger unsavoury sensory experiences on perpetual cascade while the episode lasts. For instance, when I experience it, it always almost always coincides with or triggers a major flare-up of one or more of my conditions including fibromyalgia, CFS, IBS, MCAS, POTs and CSS or at the very least a migraine and can thus take days or even weeks to recover from, as though from a forest fire running through my system laying everything to ash. This makes RSD a precarious co-occurring condition to have alongside chronic pain or other conditions of the nervous system since the effects are never short-lived and have multiple repercussions exacerbating those other health conditions (so please don’t trigger someone prone to RSD through a careless word or behaviour; the effects can be devastating, like dropping a match in dry wood).
There’s also good evidence to suggest that the experience of RSD is worse for girls and women, partly because women with ADHD and autism (both of which are prone to being much under-diagnosed in females) have often “experienced chronic negative feedback in their childhoods, with countless episodes of harsh punishment, bullying, exclusion, and humiliation from family, peers, and teachers” because of traits they have little or no control over (ADDitude Magazine). These experiences can chip away at their resilience from a young age, altering their brain chemistry by increasing adrenalin and cortisol and hardwiring a fight or flight reaction into their nervous system.
The experience “can be distinguished by its extreme, unbearable intensity, which sets it apart from normal emotional responses familiar to people who are neurotypical” (ADDitude Magazine). So having that neurotypical (NT) friend, however well-meaning, telling you to get over it, remonstrating with you to gain some perspective, is not going to help and may dig you even deeper into the sense of your angle not being seen and of being criticised or belittled for your responses to a “minor” or even so-called “imaginary” experience.
The reality is that no one can really know how it feels for the person having the experience so is impossible to presume they are making too much of it. “Rejection sensitivity is hard to tease apart. Often, people can’t find the words to describe its pain. They say it’s intense, awful, terrible, overwhelming. It is always triggered by the perceived or real loss of approval, love, or respect” (ADDitude Magazine). I suspect a part of it is that the ND body seems to hold onto visceral memories for far longer than average. I can stills recall feelings of being shredded, blasted with acid, my stomach dropped through the floor at times I was even mildly criticised at work and the same going all the way back to schooldays, which was why I worked so tirelessly to keep out of trouble. The worst occasions were when I was unfairly accused of something I hadn’t done or implicated by proximity to a teacher or manager who didn’t know me properly and who therefore believed the worst; it was as though my world would turn black and stop spinning and my entire nervous system would take such a hit.
If you are prone to getting things out of proportion (though who is to say where the benchmark of proportion should lie for a ND person) then you really can’t help it as the experience is as primal and existential as it gets, as far as your nervous system is concerned. This article on the topic of how does it feels begins with the hard-hitting quote “The initial feeling of RSD is as if you’ve been punched in the head and are struggling to regain consciousness. You then deny that it is affecting you, but your brain goes blank, your body paralyzes and, as if by the force of a volcanic eruption, you plunge into an abyss of infernal pain and fear. That is only the beginning. Nothing derails the power of RSD” (ADDitude Magazine). I would say that is at least somewhat in the right direction of how it feels on the inside.
Any real or perceived sense of rejection can trigger it and, as discussed in my last post, this is such familiar territory to anyone on the spectrum for a variety of reasons to do with “not fitting in” or not having the same processing and communication style as NTs. In effect, you live at cross-purposes to those around you and anything can set off a situation to which you are instinctively hyper-sensitive, being the one at perpetual odds thus in need of constantly monitoring the situation; although the other person is likely to be happily oblivious to your sensitivity from all the confidence of their social normalcy. Therefore, a slight that might not be noticed by anyone else can be sufficient to set RSD in motion as we become hyper tuned-in to other people’s behaviours as a means of directing our own behaviours to “fit in” and not offend, which takes being highly sensitised to the most subtle changes in the environment, including the mood and tone of other people (if RSD is indeed genetic then you can’t help thinking it was evolved by NDs in the name of increasing their survival odds as a minority group).
Combine this with the reality that NTs, in their own instinctive way, discern that NDs are different and often exclude them on this basis and there is a perfect storm in the making. This, in turn, can lead to an avoidance of social settings (more on that below), social anxiety, fear of putting yourself or your work into a public forum, low self-esteem, approval-seeking and masking behaviours, anxiety and PTSD.
I mention the latter because, when you have had a long history of real-life rejections, littered with countless perceived ones, the pattern of this becomes ingrained, making every future rejection, however minor, into a likely trigger for an episode of repeated trauma. Bullying can be the back-story of ever more severe RSD, even though the cause is likely genetic (RSD can run in families) and the current situation milder than anything the individual has been through before; yet the reminder of previous trauma is enough to reignite.
In my case, many years of being in a relationship with someone who clearly perceived my RSD (before I did!) and then played on it ruthlessly has only added to the stockpile of trauma built upon experiences of bullying and rejection at school plus another “friendship” in early adulthood that was, in hindsight, all about them playing with my RSD red button for their own entertainment. NDs, by the way, are very often targets for such behaviours. That long term partner I mentioned would systematically take apart and criticise, to the very worst degree of callousness, everything I had done or said after every social event, knowing full well he could decimate my confidence by doing so, the result of which was that I became ever-more dependent on him as my attachment person, more and more eager to please and even less likely to leave; at least, until I did. There is no doubt the trait of RSD attracts a narcissist looking to entertain themselves whilst being assured of a compliant partner!
Though I am many years beyond that relationship and now in a completely different one, those scars will always remain and have, I know, added to what (for so many people on the spectrum) seems to be an increased propensity towards RSD episodes as I mature because, rather than growing out of it like some childish trait pushed aside, as I have seen some suggestions it ought to be, life has the habit or reaffirming your worse fears the more experience you gather as a ND person, thus adding to the likelihood of more emotional dysregulation with the passing of time.
I mention the fear of putting yourself out there when you are prone to RSD. People with it can go one of two ways, as in, they avoid situations that put them at risk or they become high-achievers, striving to be above and beyond reproach and extreme perfectionists but at great cost to their health. If a person with RSD does dare to get out into a public forum it can be utterly nail biting, even at the lowest level of self-exposure such as using social media or writing a blog for a niche audience. Anywhere you feel exposed, you fear rejection to a degree that is on a whole other level to someone without RSD because the stakes are far higher than average, given the adverse effects and their repercussions on health.
As per my last post, writing is my one big outlet yet I have come to dread that anyone I know in my personal life, except a trusted core friend or two, might come across it and read it as it is not meant for those I prefer to keep my guard up with. This is because I lay myself wide open here, making my experiences raw for all the reasons I recently shared in that post and so I need this outlet as one place I can be authentic and unguarded. Additionally, when you have RSD, its just as easy to be triggered by the feeling of being ignored (in fact, one of the most triggering things!) so when you pour heart and soul into a blog only for it to receive no attention at all can be the worst of things. It makes me so thankful for my loyal readership and the wonderful comments people make in response to my material as I do tend to lay myself wide-open in this space; in fact continuing to write is almost my act of defiance in the face of the highly debilitating condition that RSD is.
However, when it comes to something like blogging (or anything by means of which you lay yourself open to scrutiny; being an artist is another of mine) the RSD risk is one of attracting criticism, rejection or other negative repercussions and the odds are that will happen at some point. When that day finally came to me, instead of being delivered by a complete stranger, it arrived from the most hurtful and dreaded quarter it could possibly have come from, being a long-time extremely valued friend with whom I had been through years of meaningful relationship (or so I thought) who wantonly misconstrued one of my posts. She read something I said about a person vaguely alluded to in one of my posts, which was clearly not her as none of the jigsaw pieces fit, yet against all logic still jumped to the conclusion that I was alluding to her (I am left wondering if she also has RSD). She consequently blasted me with such extreme vitriol in an email telling me she never wanted to hear from me again that, although I was left reeling in such intense RSD pain it plunged me straight into a very severe health flare-up, and though I did all I could to rectify the misunderstanding (an explanation she said she accepted), the relationship never recovered and she stopped contacting me from that time.
Thus I lost the good friendship and was left wondering if it had meant very little to her after all, given she was so quick to think the worse that it was unrecoverable in spite of my efforts to repair it. I still find myself dwelling on this situation and all its inherent hurt, pretty often. Its difficult not to follow the trend of such occurrences and draw the conclusion “it must be me” and thus the RSD path is often one littered with instances of self-blame or perceived failure to meet self-imposed high standards.
The memory of that situation, four years on, still feels red-hot and raw when I recollect it; partly because of all my worst fears of loss and dread come true, realised in a moment of abject horror when I opened that email, and also the deepest hurt from being so badly misconstrued, then not given the chance to have my part properly heard and accepted, to which the breakdown of the friendship felt like the final smack in the face. This is exactly the sort of thing that adds to the stockpile of experience that feeds RSD. Lacking social confidence to start with, we NDs have just our few areas where we dare to venture forth to express ourselves openly and when even those deliver the food of our worst nightmares, is it any wonder we become traumatised over the course of a lifetime?
One of the traits of RSD is to be prone to angry outbursts when a rejection scenario is perceived. These are not my forte, not being a person that is good at expressing anger or even talking through the hurt in a reasonable manner (too much dread of further criticism or rejection…) and yet the effect of this can be worst, as in, to internalise the hurt to become the festering wound that grows, on the inside. Then, you can be sure, the next time a RSD moment comes along that wound is ready and waiting to attach to the new hurt, only to become the super-sized pain that no-doubt feeds into the system of more RSD moments in the future. So yes, ingrained habit (not just yours but the habits of others that misunderstand you, treat you carelessly or without sensitivity) plus trauma certainly play a part in RSD, as far as I am concerned, though I have read opinions to the contrary. In short, it’s not all genetic nor is it all just “in your head”!
ADDitude describes RSD as “extreme emotional sensitivity and pain triggered by the perception that a person has been rejected or criticised by important people in their life”. I want to add the caveat that the person does not have to be an “important” person to generate this effect, in fact that is one of the pitfalls of RSD as the hurt can come from anywhere. I have experienced extreme RSD in situations where I perceive either rejection or criticism from complete strangers in the street or in some situation that never has to be repeated, many many times (far too many to count) and such episodes can utterly destroy my day. In fact the slightest spat in a supermarket can be enough to do it and, afterwards, it’s as though the pain refuses to switch off, clanging on endless repeat inside my head, torturing my by-now highly oversensitised nervous system which will no doubt have amped-up in sympathy like an all-body migraine turning every light, sound or other exposure into an additional source of agony. I’ve even experienced it empathically, as in, I witness a scene in the street where one person loudly or violently rejects or criticises another in my hearing and its as though it has just happened to me, but then, I know too-well that my mirror neurones are very highly activated and am convinced this is part of the neurodiverse profile for some people.
When it comes to family members (now I am in a good relationship) I am pretty sound but there are occasions when my partner’s mood can hit me hard as though there is a crisis unfolding, long silences cutting me like knives when, really, he is just in temporary shutdown and needs to take some time inside his own thoughts. When it happens, as I have heard others with RSD describe, you can feel as though some major catastrophe is unfolding or the world is coming to an end and no amount of rationale can overcome the feelings in the body.
So yes, when that person is important, such as the friend I described or a family member, the resultant pain and distress of RSD can be multiplied several-fold. In fact, when that person is someone you are close to the rejection can be all the more acute for the fact the experience of being rejected is instinctual…as in you can feeeeel that person and are so on their frequency that you just know it with every fibre of your being, unspoken though it may be (I want to add here, the very morning I got the email from the friend, I had just had a dream about her and sensed she had contacted me right before I looked). Psychologist Michael Jawer writes some interesting material on the cross-over topics of neurodiversity, intense emotions and paranormal experiences and I can well believe we are capable of experiencing outside the realms of what is deemed normal at times we are so invested, with such intensity, in an emotional experience that feels like do or die.
For instance, I have a long running RSD over one of my brothers who, without a word having being said, feels like he has an issue with me over who-knows-what, born out by extremely awkward communication between us for the past couple or so years, as much as I have tried to break the ice. The result is I am now so caught-up in rejection dysphoric mode about the situation that I have quite a phobia about any social situations where I have to be where he is or need to make contact with him and it is only getting worse. Whether he has an actual issue with me or not, he probably has no idea how much of a trigger this has now become to me, affecting my health because of the extreme anxiety it generates when I so much as think about it. So yes, being close to me, and though not a “serious” situation, this one has got right under my wire!
Have I stressed enough, the effects of RSD can be quite severe. “When this emotional response is internalised (and it often is for people with RSD), it can imitate a full, major mood disorder complete with suicidal ideation. The sudden change from feeling perfectly fine to feeling intensely sad that results from RSD is often misdiagnosed as rapid cycling mood disorder” (ADDitude Magazine). Borderline Personality Disorder is another common misdiagnosis (three times more women than men are diagnosed with this) when, really, RSD is a common and well-recognised (if not DSM included…) trait of autism and ADHD in its own right and especially for women. And why wouldn’t its effects be severe and disabling when this is an extrapolation of the heightened sensitivity trait that is so common when it comes to neurodiversity in general. In this case (in addition to or instead of environmental sensitivities or internal body sensitivities) the individual becomes hyper-sensitive to other people’s behaviours and their own sense of failure, whether they deem themselves to be constantly at fault or it could be that they simply feel “hopelessly rejected” and “misfitting” for having been born the way that they were, with all its inherent social and other challenges. Knowing that they can’t change these things about themselves and with a growing track record of pain, in spite of all best efforts to fit in and please others, it’s not hard to see how RSD takes hold and potentially gets worse with age.
Perhaps this is because the experience of RSD is so wearying, being something to add to all those other reasons why a person on the spectrum may have felt they are the one who always has to modify themselves to be accepted in the world (as I discussed last time). Its just one more thing to add to the pile and, I know in my case, it adds to my reluctance to try again in a social sphere, after so many years of chronic illness keeping me tied to home. I recognise all-too-well, in my pre illness self, just how much of my energy was expended in masking behaviours and people-pleasing and RSD only leads to more of the same. It’s true, people with RSD often “scan every person they meet to figure out what that person admires and praises. Then they present that false self to others. Often this becomes such a dominating goal that they forget what they actually wanted from their own lives. They are too busy making sure other people aren’t displeased with them” (ADDitude Magazine). Wanting to reduce the risk of returning to all those behaviours, or the increased likelihood of hurt and rejection if I don’t, I’m hardly filled with great incentive to become more social again. This bears out the opinion of this article that “RSD can make adults with ADHD anticipate rejection — even when it is anything but certain” making them “vigilant about avoiding it, which can be misdiagnosed as social phobia” (ADDitude magazine).
As I already said, RSD is a very particular type of pain, quite indescribable to the uninitiated and it can get stuck in the body. Therefore, though there is no known remedy for it, my personal go-to is to turn to somatic therapies, particularly dance movement. When I recognise I have that particular intensity of pain caught up and on loop in my body, much the same as when I am especially sensitive and overstimulated by environmental triggers, I make time to move my body to music, the more expressive the better. Even at the height of pain, where it feels electrical and as though rods of energy might dart out of my finger tips like lightning bolts (believe me, I can “blow up” electrical equipment when I am full of emotional intensity) or when that energy gets trapped in my head and jaw, when my heart feels weak and fluttery, sometimes bruised with too much emotion held in it, and when my head is full of pressure jammed with thoughts that won’t ever die down, a shrill sound trapped between my ears, making the time and effort to move or sway to music every couple of hours or so can be some sort of relief or at least a start in the right direction.
I save particular types of music for just such occasions, usually music that opens up the heart and encourages love and appreciation of the uniquely sensitive way that I am wired so that I can celebrate feeling just so highly sensory for a few minutes whilst allowing the stuck toxic energy born of a world that sometimes rubs me quite raw to dissipate out of my cells via my instinctive movements. For instance, my current go-to is a cover version of one of my favourite John Lennon songs “Oh My Love”, the lyrics of which fit the bill perfectly and help me to move some of the emotion through and out of my system. Basically, whatever works for you; a rocking chair in a window with a view can also be good for this at times when you need to stop everything and let the body, rather than your mind, process the pain out of you but you have to experiment and be proactive. When in the midst of RSD or indeed any of my oversensitive episodes, just one music track or five minutes in my rocking chair at a time works for me so that I don’t overstimulate during an episode yet, with patience and diligence, I can gently inch some of the intensity out of my body using these methods and I highly recommend it!