• Crys Raffa

RSD Really just says IDGAF


I am Autistic and ADHD. One of the facets of this is a condition called RSD: Rejection Sensitive Dysphoria. It is a very real a serious factor in the lives of neurodivergent people and is so highly mistaken as a built in feature of anxiety that personally, I was misdiagnosed as having anxiety and nothing else for literal years because of it. I was diagnosed with Bipolar and depression as well. The umbrella wasn't diagnosed (ASD) but all of the things that constitute facets of it, were tagged.


In an article from psychologytoday.com


RSD, an emotional dysregulation symptom of ADHD, is common; however, you won't find it in the DSM. RSD is defined as "a triggered, wordless emotional pain that occurs after an actual or perceived loss of approval, love, or respect."

In an interview, the ADHD specialist who coined the term, William Dodson, MD, explained:

The pain is so primitive and overwhelming that people struggle to find any words to describe it....In reaction, these individuals often either become people pleasers or withdraw and abandon their own goals out of fear of failure. The other most common way of protecting oneself from the extreme pain of RSD is to give up trying anything new unless one is assured of quick and complete success. The notion of trying and failing or being turned down is just too painful to risk. They don't go on dates. They don't apply for jobs. They don't speak in meetings or make their ideas and needs known to anyone.

It is crippling in ways we can't get our own heads around, let alone put into words for others to understand. All we know is the pain and that we are in NO WAY allowed to show others how hurt we feel. This presents a lot of problems, because we are told to express ourselves and voice it when things bother us; yet not make our issues another person's burden. We should control our emotions and self regulate, but RSD gives zeros Fs about that and like all anxiety, panic, or depression responses is wholly disproportionate to the cause.


In childhood it leads to acting out and labels being applied. Vivid are my own memories of being assertively told how wrong and bad I was. I hear my mother calling me names ranging from "bitch" to "egghead" and worse. It was normal to be put in front of the "firing squad" for punishments where she and my dad would each sit in a recliner to take turns yelling at me for some crime or another. If I had the gaul to start crying visibly it made her yell that much more and worse. If, having been confined to my room for the next installment of grounding (80% or more of my childhood was defined this way) it was possible to hear me expressing sadness or anger, the duration of my sentence was extended.


Masking is not a condition wholly unique to neurodivergents, but it is a survival response if you ask me. We do it as a reflex the way others take on a mannerism or accent due to environment from childhood. When we internalize that we are never going to understand the "why" of a situation or the "how" to be of a social environment, our masks develop in basic forms. Mine began in very early childhood as the direct result of my mother and her abusive ways. Being constantly told I was a waste of life, my birth was a mistake, I was a regret and a reminder of her mistakes, being told I was how she faced living with her sins and that the result was; having brought me into this world, she was well within her rights to "take me right the fuck back out of it" whenever she felt like it.


So I learned to never be seen or heard. I learned to not have a voice or opinion. I learned to not matter and if I was noticed, be helpful or at least NOT be an issue. I had to be a servant if anything and if I can't serve, I simply can't be. (Yeah, Luisa from Encanto hit me square in the head...) It was the constant message that I was in no way ever going to be enough, let alone good or good enough. It was always clear that my birth and that I was KEPT...which became a key word when I learned my sister had *not been*...were factors in my mother's balance book and nothing more. So that message was internalized as well. My value is only what she has given it in her ledger. I am the value of labour she gets her husband to do for her. I am the value of money she gets her mother to send "for me" so bills are paid. Anything I was ever gifted (checks, sellable items, etc) were taken by her and for her to further prove my value was what her bank book could hold.


When I was 16, she died after a lifetime of smoking and previous suicide attempts. The most serious of these *during my lifetime* was when she was in ICU when I was 12 I believe.


She had a DNR, Do Not Resuscitate order meaning no life saving measures should be taken. No vents or CPR, no organs *given to her* but she herself was an organ donor for others. I came home from school every day while my dad was still at work. His video store job was until 11pm and I always envied how long he spent out of the house every day. (I was also aware of how by design it was. It felt, thanks to RSD like it was me being avoided as much as her.) So, I get home and my mom is clearly in distress. She is on 24hr oxygen and this is all so old hat to me that I grab the cordless phone, call 911 and go thru it all yet again while wondering what I'm making myself for supper. I tell myself "at least I can watch tv for once since nobody is home. That's a change."


They take her to the local hospital and admit her. I call my dad at work with what information they give me and he says, sounding as bored of life with her as I am "ok, we will swing by there tomorrow assuming they don't call. Tomorrow is what? Saturday? Ok, I close, so we can go before work." He and I have a quiet morning of avoidance. He tells me if she isn't there I can not be grounded that weekend since he will be at work anyway. We go to the hospital and find out she is on a vent in the ICU. They have given her "hearts milk" for critical patients and kept her on a nicotine patch when they could have started detoxing her, but whatever. It takes 4 days for her to wakeup enough, but she remains on the vent another week. I visit her after school each day cuz I only know how to obey and my dad is at work. She shouldn't be alone I tell myself. It is also "my job" to remind them she has a DNR on file and they are disregarding her wishes technically.


Only one doctor acknowledged me saying this and even then he summed it up as "that may be but since you're only 12, amazingly well spoken tho you are, we can't legally recognize you as being a person. As far as the hospital is concerned, you don't matter on her behalf. If your dad made an issue of it or a family lawyer maybe..." (I respect them for the honesty at least.) The same day this doctor had the moment to dane my existence as being real, my mother woke up enough to have minor interactions. Still on a vent and only able to point or nod, I decided to make her a board with the alphabet and the words YES and NO. She was a hyper vocal person. No way to communicate would drive her insane and then she'd take it out on me later for not being more helpful I reasoned.


She recognized me when I came in. I started telling her what had been going on and years of being forced to read facial cues and react to subtle things to avoid bigger things meant I could answer her face when she couldn't speak. Plain as day were the anger, confusion, distrust of it all. I showed her the cardboard and the marker and how I was making a board for her to use to give simple messages. I actually saw gratitude for a moment....shows how desperate she was right then. My RSD goes quiet when people behave with genuine appreciation or thanks. It seems impossible to tell if it is honest or not, but I will take it since the pain and anguish of the RSD assumptions go quiet at all.


I had been using the board with her for maybe a half hour when my dad came in. He had been at some appointment and met me. I showed him the board I'd made and he seemed to find it useful as well. My RSD took another shot of STFU and I was glad. But like all good things, my dad then asked her the question I can never forget and the answer I can't erase from my brain...not because of what her answer was, but because I had to explain her answer to my dad and the **PROFOUND JOY** on her face which confirmed I was right in what I had said.


Dad was frustrated with the whole situation and asked her what she wanted or what could he do for her. The "wanted" question got her focus and she reached out to point at her new letter board to indicate H O M E before resting her arm. Dad of course made the logical guess she meant the apartment and her chair, her cat, her normal stuff and such. Basics were what he assumed she wanted. The look on her face made it obscenely clear to me that this was 100% not remotely the case. Vivid is the sound of my voice responding; clipped and angry. I was annoyed he didn't know her well enough to know what she meant. "She doesn't mean the apartment you nitwit. She means heaven. Home means dead. She's saying she wants to go home to heaven; she should be dead right now.!!"


Dad looked vaguely startled as if that can't possibly be right, but as soon as I looked at my mother's face...I had every confidence it was the most correct I may ever be. Such pure relief, such gratitude and such expressive understanding. It was a time when you tell yourself two souls have shared a moment. For my mother, she finally felt heard; someone was actually listening to what she wanted most. For me, I was giving voice to the deepest fear I had always held based on how my mother had always treated me...and had it confirmed without hesitation.


She would rather die than live life as my mother.


Not everyone has experiences like this and I will be first to admit many have suffered things so much worse that I can hardly begin to imagine them. Yet this is one of the things that FOR ME makes my own RSD so much worse. I am now a mom of 2 kids who are also ASD like myself. Everyday I see more and more of myself in them and when they have those outbursts that all kids have, like this morning was, I flashback to this as often as not. Having such pain from hearing my kids tell me how rude they find me or calling me names; hearing whatever creative rudeness they express or acts of aggression they take out on me (punches etc), doing my absolute darndest to not flip the hell out and scream all the time from my own emotional dysregulation....


The state of my marriage and RSD are a whole other post as well as how it impacts my parenting and my kids. Yet that core memory makes me stop every day and question if my kids could ever ask on any level if anything about me is anything other than 100% about their happiness and safety. My kids having a fever makes me panic. When my younger had to get stitches at age 4 on her forehead I spent a week in full panic mode afterward. A month later I was in the same ER for a varicose vein letting go in front of my kids on my leg when I just scratched an itch. It happened in front of my younger again 2 months ago, same way, same leg and caused by stress again.


RSD is one of those conditions that simply says IDGAF about the rest of the conditions of your life. At any point and for any reason I will make clear to you that you are scum and whenever there is reason to make you feel it 1000x worse, I WILL! So you can not judge fairly any other person's reaction to something. You would have never looked at me and known what I faced at home. Even now, no outsider would ever know what my days have been like the past decade.


If you see someone taking something quite hard and don't understand why, try asking them what makes it so hard hitting instead of telling them how bad it isn't. It isn't bad to *you* perhaps...but you aren't me anymore than I am you.


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