The Telltale Typo: Managing RSD with and without Medication

First off, thanks to anunusualkindofperfect life for making the first comment on my blog! I’m going to reply as a full blog post, since that covers at least one “what do I write about today?” moment. She asked:

I can certainly relate to the RSD. Have you found anything yet helpful for treatment for it?

I’m going to answer her question about how I manage my Rejection Sensitive Dysphoria in two ways. First, I’ll answer from my current post-diagnosis perspective, and second I’ll speak for the prior thirty-odd years of my life! I realize I may have made it sound like I was diagnosed during school in my first post. I was trying to keep some potentially identifying details obscured, but if I say I’m an early-thirty-something female, I think it’s okay to admit I wasn’t diagnosed until my late twenties. The 1990s K-12 system was so ill-prepared to identify girls with ADHD that my story seems to be more the rule than the exception.

RSD isn’t a universally established medical term in ADHD, but it’s unofficially endorsed by enough patients and practitioners who specialize in ADHD – though they may call it emotional dysregulation or emotional distress syndrome – that I feel okay at least talking about it. That helped a lot – just knowing there were names for my experiences that validated my reality – as did knowing that RSD is physiologically based. We really do experience emotions differently in our ADHD brains, and knowing that is half the battle with RSD. However, the other element of my current pharmaceutical treatment is not common in the literature. I stumbled onto it because I also have PTSD. William Dodson, whom people with ADHD seem to either love or hate, recommends the same thing, but I stumbled into a pharmacological treatment that works for me by chance. Stimulants have been a godsend for my career. However, they do nothing for RSD. I was also offered clonidine at one point for PTSD nightmares, and, while it did nothing for the nightmares, I realized clonidine does tamp down the physical pain of RSD for me. I am not a doctor. I’m always hesitant about going off script into alternative treatments, but, for me at least, a PTSD treatment also helps my RSD.

I’m not necessarily that shocked – people like James Ochoa, Terry Matlen and Sari Solden talk about RSD self-treatment very much like therapists talk about the co-occurring PTSD. This makes a lot of sense to me, as someone with both RSD and PTSD. The two don’t feel markedly different to me somatically. Also, how can someone bare as much shame and disparagement as the typical woman with ADHD does throughout her life and, coupled with the hypersensitive ADHD nervous system, not respond a little like she has trauma? Who’s to say a lifetime with undiagnosed ADHD isn’t trauma, and, taking it a step further, why do we not assume that, since women with ADHD are more likely to develop PTSD-like symptoms, anxiety and depression as a result of negative experiences than their neurotypical peers, that RSD isn’t biologically related to the body’s global trauma response, even for those who don’t have co-occurring traditional trauma histories?

Even before my ADHD or PTSD diagnoses, the only things that ever helped me manage RSD were very grounded in the body. RSD is a painful, intense physical sensation. Things that do help, both pre- and post-diagnoses, basically disconnect my body and mind long enough to break the feedback loop between the two. Traditional CBT asks me to challenge my negative thoughts, but my brain doesn’t have much say while my nervous system is screaming at me. It’s also hard to call it catastrophizing when I’m verbatim replaying scenarios in my mind that I’ve heard in the real world for years each time I make a mistake. When I make a mistake, ADHD-induced or not, it isn’t typical catastrophizing to expect it might lower someone’s opinion of me, or have other job or life consequences. I’ve been there before, and that’s my lived experience. Denying my own reality and saying I can’t accurately judge what the potential consequences of my own actions are only makes me feel more stupid, invalidated, and unable to trust my judgement. So, instead, I try to first distract my mind and body with another equally intense stimulus long enough to just let my body spin itself out. Afterwards, I can more rationally think about responding to the trigger itself, or the damage caused by any hasty words or tears I let fly while experiencing the pain of RSD.

At home, equally intense stimuli for me are things like the following:

1) Watching/reading something either completely escapist, or completely terrifying (but not related to my personal history or even necessarily to the real world). For escapism, I go with guilty pleasures such as urban fantasy with ass-kicking heroines. (I’m reading the Kitty Norville series currently) and/or horror movies or crime dramas (Criminal Minds, for instance.)

2) Holding a bag of ice to my forehead as long as I can stand it, or alternating between sticking my hand in ice water and breathing in the hot steam when I open the dishwasher during its dry cycle.

3) Sitting in a bath, or taking a shower, that is just shy of scalding. If I go with a full bath, I usually do so while listening to podcasts.

4) Getting in my car, closing the door, and screaming along with the most angsty teenage alternative rock I can think of.

5) Asking someone I trust (for me, my partner) to use a plastic massage ball to press as hard as possible on the ever-present knots in my back in a mini Thai-style massage. (If you have the money and are comfortable with strangers touching you, actual professional deep tissue massage would probably be even better when your RSD is really at its worst.)

6) Sitting for an hour with a loving kitty on my lap. After all, petting an animal has been shown to lower cortisol and blood pressure.

7) Going for a run until I’m physically exhausted.

It is harder to generate intense somatic experiences at work, since I can’t be loud (or naked, or bring my cat!) However, my suggestions for distracting the mind while discharging tension in the body at work include the following:

1) If you can’t do stereotypical meditation, where you empty your mind, because the ADHD mind is never still, or calm enough, go with active, word-repetition-based meditation. Even though I am no longer practicing any religion, I find Catholic rosary prayer helpful on tough days at work. The rosary is a tactile fidget toy, and, since just saying the prayers by rote isn’t sufficiently mentally challenging, I try and make myself say the prayers in other languages silently in my head. I’m not fluent in any second language, so it’s a daunting working memory task. If artifacts of religion are upsetting, your favorite tactile fidget + counting numbers backwards by threes in your head or trying to recite favorite poems from memory would work just as well.

2) If RSD is about to make you cry in public, try grabbing the fleshy bit between thumb and forefinger discreetly and pinching hard, or wearing an elastic bracelet or ponytail holder and discreetly snapping your wrist.

3) If you are afforded some privacy in your office, twist in your seat until your head is below your waist and stay there until the blood rushing to your head makes you light-headed. (If you know of an empty restroom, you might be able to do this in a stall if you are trapped in an open office.)

4) If you don’t have an office to pace in, offer to make a coffee run for the team. Getting out, moving, and having some time away from the trigger, plus warm liquid caffeine goodness, could be just enough of a break to calm you down. If it’s winter, try leaving your coat off while you walk to the coffee place and losing yourself in the chill.

5) If you know you only internalize your RSD, and never lash out at others, you can try reading political commentary by someone on the opposite side of the political spectrum, or otherwise read something on the Internet that gets your blood boiling. This only works for people who cry and shrink in shame when experiencing RSD. For those who externalize RSD as anger, this could backfire. (Also, remember to only browse the Internet for incendiary comments on your smartphone with your door closed, or in that previously mentioned empty bathroom. Don’t let IT catch you “off task” at work with their browser tracking.)

Finally, I try to remember that if RSD is truly biologically related to trauma or phobias – which I have the personal experience, though not the professional training to suggest – then the exposure therapy I’m doing here should help somatically as much as mentally. My original first step towards trying to treat my RSD (not just trying to hide it) was just admitting a memory that caused me shame verbally to my partner. You must have someone you trust to do this safely: a therapist, a partner, etc. So, it may not be possible right away for all my readers. I was in my mid-twenties, still undiagnosed, before I trusted my partner enough to voluntarily tell a story that triggered my RSD. I’ve been slowly building up ways to safely show vulnerability, to more people in more ways, since that first breakthrough. Ironically, some of the shame stories I shared with my partner ultimately helped him recognize that I might have ADHD and push me to be formally diagnosed.

RSD never fully goes away. I think it’s something we’re just stuck with until the next generation of the DSM and pharmaceuticals do for it what Adderall did for our ability to make it to appointments on time. Case in point: I found a typo in my first blog post. I had proofread that post multiple times. I could have sworn it was perfect. Nope – I have ADHD. Typos and other inattentive mistakes are core features of the diagnosis. I still experienced symptoms of RSD seeing that infuriating mistake. I am extremely embarrassed, but I’m going to attempt to take my own advice and re-frame my narrative as an example of rejection therapy. Of course, I’ll keep proofreading my posts; however, if a typo sneaks through to publication despite my diligence, I have decided I’m leaving it in. Difficulty with these types of details isn’t a sign of my inherent stupidity. It’s a diagnostic sign of a brain-based disorder. It’s part of how I and my readers know I really do have ADHD. So, I’ll go practice what I preached above to close this response. I’ll draw upon my tricks to tamp down my body’s visceral response to seeing that telltale typo after I finish this post. Then, in a day or two when I’m ready, I’ll go back and look at the typo and repeat to myself “this is not a sign of stupidity, just ADHD.” It might even help!

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

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