WHP Newsletter 002 – Advocacy, Accountability and ADHD

Hello friends, it’s been a hot minute since I wrote a blog or had the chance to create a newsletter. I have had a few things happen in my personal life, then festive holidays, some interesting online interactions regarding asking for citations, some bullying and stalking that went along with it and also my cat was very sick. It’s been wild!

I wanted to use this space to clear up a few things as I am still de-esculating upset peers from a comment I made on one persons Instagram account. The question itself was asking for citations. What for you ask? RSD. The new buzz word in our online communities.

I’ve written a lot about my personal experiences with rejection sensitivity, what I think it all means, even started to make comics about it thinking hey! this is a thing I can talk about and help my peers with as I have plenty of lived experience being rejected. But I learned very quickly a few key points which I want to share today, and hopefully also clear the air of a lot of misunderstanding, which unfortunately lead to people bullying me.
(I will not be talking about the details on this event, but just clarifying my side of reasoning behind the misconstrued and misrepresented comment).

What is RSD. RSD is short for rejection sensitivity dysphoria. It is “a fear of being rejected”.
I first came across this term in online support groups for ADHD across Facebook. Every source points to one Additude magazine article written by a psychologist named Dr. Dodson. (literally every other website has taken information directly from here, psychologytoday, mayoclinic, most of your Dr. Google websites). In this article Dodson states things like 99% of ADHDers experience Rejection Sensitivity Dysphoria. Additude even provide a BuzzFeed like quiz to score yourself whether or not you have RSD.

As much as this might be very validating to many of us, including myself, this information was a revelation at the time – But I learned it also isn’t something you can be diagnosed with or treated for specifically with medication. The article recommends some medication (medication that cannot be said actually treats this or is available in most countries outside of USA) but in general, it’s more something “you just gotta live with” and try methods like CBT to help you with the symptoms and basically tells you to stop being so sensitive…

As an online advocacy account with many thousands of followers, I recognize, I hold a lot of power and influence when it comes to information. I also know I have ethical responsibilities in my advocacy. You will see, I never fact drop, I only talk from my lived experience (the nature of peer support) because I highly value the boundary and sanctuary of another persons mental health. So it greatly goes against my moral, ethical and legal boundaries to say anything I share is science without citations, and I definitely recognize the importance of this as there is so much stigma and misunderstanding with ADHD already. I do not want to contribute nor negatively impact my peers mental health with information that isn’t necessarily true.

And here is where the bullying began. This account, unfortunately blocked all my attempts to discuss this comment with them, but instead went on a campaign in their story feed to say I said that RSD is not real. I want to make it clear that these feelings you experience that you are calling RSD (which is perfectly fine to call it btw, it is not for me to say how you self identify) are real. They are very real and important feelings and experiences. What they are actually, however, needs to be investigated.

I say this because the symptoms of RSD greatly overlap trauma, OCD, CPTSD, BPD, anxiety disorders and some other medical conditions. I wanted to investigate with the person who posted this, where they got their information from. In all my attempts to find correlating peer reviewed science specifically about ADHD and RSD was for naught. There is none. The only source of this information is from Dr. Dodson’s website and this one Additude Magazine link. Which carry no citations to any studies (the website and article only cites itself). There is however a lot of studies about rejection sensitivity for other psychiatric conditions and is even well noted in the DSM-V.

So not only did I think it was perfectly fair to ask for citations from a REPUTABLE source, I thought it was deeply irresponsible to personally keep promoting this information and was hoping to also help others who was making this same mistake in advocacy as I was. Unfortunately there was a misunderstanding and I have been the victim of an online bullying campaign saying that I said RSD isn’t real. I definitely never said that specifically, I said it was dangerous to claim something was fact without citations. So again, I am saying it now in hopes that my peers know that it is important to investigate with a qualified medical professional just in case it is something like trauma (what people think is trauma also needs to be investigated). Which should never be taken lightly as one could accidentally contribute to exacerbating this trauma, the ultimate consequence is that it could seriously hurt someone.

I also recognize that diagnosis and access to mental health support and therapy of any kind is a privilege. Hence why I also think it is very important that the information people are using for self diagnosis and treatment is correct. Or at least cited so people looking at this information can look further into it. But I have never said outright that it was not real.

This has been one of many incidents in real life and online that is part of being a mental health advocate as the stigma for ADHD is serious and it’s bad, even amongst medical professionals, who won’t even entertain the idea that ADHD for Adults is real. And you can see how much I care about this and take it as a responsibility and to be accountable that what information I do provide doesn’t further hurt our community or the neurodiversity movement in general.

I honestly take no problem in people identifying with this term but I would like those people to also consider the language and deeper meaning behind this term. As much as I am a science minded person. I am also very socially minded when it comes to representation, autonomy and agency. There is not much of that in this term except a feeling to identify with but also an acronym that more or less says “it’s in your head”.

Whether perceived or a real rejection, the feeling is real. When you are living with a severely misunderstood neurotype, those feelings over your life are exacerbated to a point where it definitely may be difficult to navigate interactions in and outside of our personal lives, and it can feel like rejection. We are rejected for our big feelings, being sensitive and sometimes inability to be objective about our experiences. All common symptoms of being ADHD and/or living with undiagnosed and untreated ADHD for a long time (especially in those diagnosed as Adults). We are rejected for our ADHDness and often misunderstood and misinterpreted even in our best intentions. Many people do not understand how disabling ADHD can be and impairs our ability to communicate (especially if you have other co-occurring neurotypes like Autism). For some of us it can make life really difficult and we can be the victims of much rejection, just for being ourselves.

A big part of why I became an advocate is because I want to fight this. Yes, we are accountable for our actual behaviours (ADHD is not a behavourial problem it is a neurological brain disorder) and the consequences of them, but in our day to day lives, it is a lot to ask from an ADHDer when you are really struggling with some of the more harder traits. What I hope in my advocacy is to allow more autonomy with understanding, to normalize our experiences as real. But a dysphoria, I feel in a blanket way, saying 99% of ADHDers have this, is incredibly dismissive regarding the trauma and the gas lighting of our neurotype we face each day. No wonder people relate to this term when it can feel like that. Personally, I feel we already meet neurotypical expectations all the way, it is very exhausting to do so. It’s the reason we leave jobs, why relationships fall apart, why some of us end up in respite from depression and burn out.

I feel the term RSD shifts the blame on to us, when in many many circumstances we are the victims of ableism in our society. We are constantly having to hide our ADHD in order to fit in and many of these traits aren’t even problematic to anyone else. Again accountability for behaviour is important, but not all the things we are judged on relate to behaviour, it is literally how our brains are. Something we cannot change! No medication or therapy will change the fact we are ADHD. I hope now, you can see my train of thought.

Are you experiencing RSD or is it something more? Is it really something you have done or are you being gas lit? Why is it so bad to feel big, think big? Why do we allow people to value productivity over mental health?

To close this newsletter, I kindly request, please stop bullying me about this. All I want is for my peers to be understood and get the help they deserve. I want you to have autonomy, to be unapologetically yourself. We all need to live in a society that values these things are important and how detrimental it is to someones mental health & well-being when we do not.

And to my advocate peers – please consider that what you do impacts others, that there is a real person on the other side of the screen, reading what you say. Often vulnerable people who are hurt and looking for support and answers. You have a ethical responsibility if you claim to be an advocate to do this, learn, grow, cite.

Thanks for reading and I will see you all in my next blog post.

If you would like to read more about what other advocates are saying regarding this and neurodiversity check out these amazing reads:

How Psychiatry Victim-Blames Trauma Survivors and Denies Them Treatment
by Queer Vengeance

Is It Rejection Sensitive Dysphoria or Complex Trauma?
by Jesse Meadows

Neurodiversity: Some basic terms & definitions
by Dr. Nick Walker

Published by Jenn has ADHD

Jennifer Parker, New Zealand. ADHD Advocate and Peer. jennhasadhd.com

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