Image description: a bald human is cringing in pain and effort with their hands at their temples, presumably rubbing them. A forcefield radiates out in rings from their forehead. The caption reads: Me trying to remember what I heard or said just moments ago.

Cw: ADHD management and healthcare story/rant

So today was the 4th time within 3 weeks that I’ve fucked up in bigger ways because of ADHD brain. Here’s the storyline, and then I’ll get into specific issues with healthcare:

It all started 3 weeks ago when, after basically fighting with my PCP, I had the opportunity to drug test for controlled substances so that I could start my ADHD treatment early (I’m seeing an actual psychiatrist at the end of this month). Because I had the immediate opportunity to jumpstart treatment, I accidentally bypassed the appointment I had that day for my TMD treatment. I realized 5 minutes too late to make it, had to call in all embarrassed, and reschedule. All was fine, but it’s just really frustrating and ironic that I was getting screened for ADHD medication while missing an appointment because of my ADHD (in two ways). 

That rescheduled appointment was then scheduled for a time I forgot I was going to be out of town during, and had to again reschedule that last minute as well.  

Then later in the week, I almost missed my re-rescheduled appointment, EVEN THOUGH I KNEW IT WAS IN MY CALENDAR, because I was out from other obligations and thought in the moment that it would be convenient to go grocery shopping since I was near the store. Half way through filling my cart I realized I had to be at the other appointment, rushed to put everything back, and made it out to where I needed to be with no time to spare. FINALLY I made it to my appointment that I’ve been waiting for, for almost a month. 

Cool, some fumbling around and embarrassment, but nothing major (which, I’ve definitely missed major things in the past) because all turned out fine. 

Then today, after weeks of planning with my mom for me to watch her dog while she’s away, I realized that I have a very important psych appointment Tuesday this week (for ADHD treatment). I’m supposed to watch Bella (the dog) down near the Finger Lakes, which is an hour and half away from where I live. Mom and I arranged for me to stay there all week, which would have meant that I’d need to leave Bella in her crate for several hours Tuesday. Thankfully Mom isn’t leaving until Tuesday morning anyway, so she can stay with Bella back home (not at the lake). Now I can stay home until my appointment and then take Bella after. But Mom went out of her way to make sure she borrowed a car to take the dog to the lake today, and she was counting on me to also water the flowers. Once again I leave people at a disadvantage because my brain can’t even keep its shit together for a day.

“You need a system, Jae.”

Yes Mom, that’s why we’re even having this conversation right now, because I have a system and it caught my mistake TODAY instead of DAY OF. But I can’t be hypervigilant and take in my schedule for the whole month every day. I can barely make it happen for a week at a time. That’s so much anxiety. That’s so much juggling of too many things, even though it’s all written down, when my processing and capacity are already at a low. I often can’t get shit done if I’m stuck in a mode other than “one day at a time”. 

“I need you to be here at 10AM”, demands Mom. “You know I have an appointment to be at! Let me make sure I can do that,” I answer. “You already told me what time it’s at!” she barks back. “Yes! And I don’t remember!” This is seriously how my brain is nearly 100% of the time. I can’t remember things that I just uttered 2 seconds ago much of the time. It’s a stressful existence, to say the least.

Who the fuck cares, right? I’m privileged that this hasn’t had a huge impact on my life, as a lot of this is “first world problems” kind of stuff. But shit adds up. My healthcare was almost jeopardized several times, and I’ve caused people I love a lot of stress and undue inconvenience. This is why I need ADHD treatment, not just to aid me in getting my shit together for my own life (career and self-care wise), but to make sure I inconvenience others less with my mistakes. 

Mental health wise, I don’t think people realize how much ADHD can wreak havoc. There is more than memory dysfunction. Not only does it make my relationships difficult to maintain through fuck ups like this, but there’s no relationship degradation either. So when I don’t see or talk to people for months, much of the time I feel like we should just pick up where we left off because to me, nothing’s changed. But to them, that time period of not interacting with each other means they’re no longer important to me. Thankfully most of my people now are also neurodivergent (ND) and know what this is like, so we don’t hold each other to neurotypical (NT) standards, but it still sucks. Even then, the fear of that degradation happening is there. 

Rejection Sensitive Dysphoria (RSD) is also a thing for many ADHD folk. RSD makes it so perceived AND actual rejection takes a genuine attack on the psyche, where often it catastrophizes into “everyone hates me” and “I’m only a fuck up” kind of thinking. Can you imagine having that on loop in your head almost every day? It’s really hard to rise above that and feel like a competent human being who is worthy of love and other good things. It’s intrusive, a compulsion: you have to constantly redirect your focus, which takes a lot of energy–energy that you are not infinitely made up of, especially in the face of many daily adversities.

And then you have the very real impact of big fuck ups, like missing an important appointment. Not only can you be penalized by the entity that you were supposed to meet with, but the shame that comes with that kind of fuck up HURTS. It is actually physically painful a lot of the time (because of how I’m wired). And it only reminds you of all the other times you’ve repeated the same behavior that you also physically can’t prevent. I can, and do, set multiple alarms, have multiple lists, have multiple calendar events (often set at least 15 min before the actual start of the event)—all to keep me on track, and these mistakes JUST KEEP HAPPENING. 

I genuinely don’t think NT people or maybe OCD/high anxiety ND types can grasp this kind of lived experience, and it’s super frustrating to feel added judgment because of that. This is not a “woe is me” post. This is a call for awareness that a lot of us try so freaking hard and still fall short. This is to ask people to stop judging others because they’re consistently inconsistent. As hard as I try to fit into the systems that be, I simply DO NOT FIT. So many of us ND folk live in this kind of existence, day in, day out. It’s exhausting. It can be incredibly debilitating. 

“Jae is a wonderful student, they just need to work on consistency.”

– A college professor of mine.

I’ve been working on being consistent my whole fucking life. Gods how I WISH I could just gain and keep those skills, after all this time “working” on it. 

And to end, a rant on medical care:

I had to argue and prove my medical history to my PCP for him to take me seriously about ADHD treatment. First off, he doesn’t even believe adults can have ADHD. Like, what happens to children with ADHD who grow up? Their neurology just changes at the age of 18, like a flip of a switch? You can’t be “cured” out of it, it’s a friggin neurotype! Which, it doesn’t even need curing, it needs specific accommodations, just like any other neurotype. So not only did I have to feel invalidated and judged for needing medical treatment for something my doctor doesn’t even believe in, but he kept pushing medication (that I hadn’t remembered at the time that I’d already tried which put me in the hospital). He kept pushing Strattera because it’s not a “controlled substance”, when Adderall literally was the only thing that worked for me before, even though I was on too high/frequent a dose (and it also almost put me in the hospital). I am a firm believer that I can make my life better, more consistent, if I have control of my ADHD treatment. If I get to decide how much and when I need to take a stimulant, then I may be better suited to managing the days of capitalist, ableist society.   

I finally got to take a drug test, after confirming that having THC (weed, or better, cannibis) in my system would not fail me (though I only got verbal confirmation, and I wish I had gotten it in writing). And after all the to-do about not wanting to fail for having THC in my system, the test comes back negative for everything including THC. It was surprising and we ordered another test which I took the following week. Finally THC shows positive, but then my doctor goes out of town without sending my script in for Adderall. The “fill-in” doctor tells me that he can’t do anything because he needs to defer to my PCP’s judgment about the THC, making me wait yet another week for treatment. So now, instead of going into my psych appointment with a few weeks of treatment under my belt, I won’t even have a few days which defeats the whole purpose of going through this entire process with my PCP to begin with. This whole time I’ve felt like I’m being trapped into something that reflects poorly on me. I have a lot of medical trauma and misjudgments in my chart, and I feel like this whole experience is just adding to that. Either way, receiving proper treatment for ADHD as an adult apparently isn’t as easy as folk make it out to be, and it’s incredibly frustrating. It’s probable that if I had been able to start treatment when I was supposed to have started, I wouldn’t even be writing this post right now about all the fuck ups of the last few weeks.  

Update: literally as I’m writing this, I got a text from my pharmacy that my script is now filled. For the wrong mg. Well, at least I get a day to try it out I guess? Ugh.

Anyway, something-something our healthcare sucks, stigma sucks, ADHD sucks (often, but not always). And I’m Tired™. End rant.

What are the solutions though? How do we find ourselves better healthcare professionals who believe patients when they talk about their lived experience? How do we break down stigma and treat each other with dignity and respect? The best I’ve come up with so far is to speak out, and loudly, about our experiences. If you’d like to join in on the conversation, I’d love to hear about your experience too! And I encourage you to post and share in your own social groups of the same. We only have so much reach when we solely speak to each other, to people who already understand our similar plights. Much love to you! 💜🌈


Need to rant about this stuff too? I’m your guy! You can schedule with me here (read package information and scroll to the bottom to fill out a Calendly appointment time slot). Looking forward to supporting you!

Hi friends! I hope to get back to writing regular articles soon, but in the meantime I have some events coming up that you might be interested in!

TONIGHT we have our Polyamory Panel Series session on Disability and Polyamory. This will be a fishbowl discussion to explore the dynamics of living a polyamorous life as a disabled person. From Covid, to boundaries and needs outside of the pandemic, to marriage equality, this topic is sure to have a lot of meat to chew on! Tonight, Monday April 18th at 7-8:30pm EST. Zoom link here! *this will be recorded and livestreamed*

Sunday April 24th at 2-5pm EST we have Queer^ Grief: Honoring the Beauty of Letting Go, Jam & Open Mic!

made with inShot and FlyerMaker apps

Queer^ grief is the grief we hold for having to live in a world that does not always accept, respect, or celebrate us for who we are as members of the LGBTQIA+ community. The caret (^) is for those who are additionally queer because of any other marginalized identity that is at odds with normative culture (race/ethnicity, neurodivergence, ability status, etc.).

This is a two-part event. The first 45 min will be a brave space for us to name the pain we have been carrying and find solace in one another as we share in breakout rooms. After a 15 minute break, we will be welcomed back to the space with a grounding exercise. An open format for sharing art and creative expression will follow. People will be able to share whatever form of expression their grief has produced, or that has helped them process their grief (painting/drawing, music, poetry, short story, even comedy, etc.). In this way, not only will we be able to connect over grief and set resilience down, but also be able to connect over the beauty that is free expression, that comes from that pain. More details and registration here!

*this event is free with a suggested donation of $5-35 for either segment, or $10-50 for both; registration required*

Looking forward to being in community with you!

Hi friends! I know I haven’t written much lately, but at least it’s for a good reason—I’ve been super busy networking and getting things running! I’ve updated my events tab, but here’s a flyer for this week’s events. I hope to see you there!

Transcription:

This week at Queer Cult: Tuesday, Feb. 8th @ 5:30pm EST is Talks with the Neurodivergent Rebel! This will be on identity-first language, functioning labels, pathology, and grief.

Also on Tuesday, Feb. 8th @ 7:15pm EST is Intersections of the Naked Space. This will be on spirituality and the Magical Playground of the Inner Child. Both events on this Tuesday will be livestreamed to Facebook @thequeercult

On Saturday, Feb. 12th @ 1:30pm EST I have an interview with Aucademy, based in the UK. I will be sharing my autistic and queer self-discovery journey and its intersections of religion, relationships, and grief. This will be livestreamed to Facebook @aucademy.

I’ve never identified with the binary, not even as a young kid. It just didn’t make any sense.

– Me, from my post Nonbinary and Me

I’ve written a few times about my nonbinary gender and what it means to me. And I feel like I’ve done a pretty good job at expressing myself. Except it’s still felt a bit inconclusive, like something is perpetually lacking. Then I recently found autigender:

Neurodiverse Tumblr users first coined autigender in 2014, defining it as a gender which can only be understood in the context of being autistic. This definition suggests that some people’s gender experience and knowledge is influenced by or attached to their being autistic. 

– Katie Munday on AIM for the Rainbow

While autigender can be used as a standalone gender, it’s also used as a qualifier (much like nonbinary). When I say I am autigender nonbinary, I mean I cannot see the world without my autism’s influence, including perceiving and understanding how I am nonbinary. Using “autigender” does not make a person trans, though transness can of course co-occur (as it does with me). Autigender, as I use it, actually expands my understanding of my own transness. It just makes it make more sense.

I’ve never understood gender. Not once. I’ve only played the part and respected others’ expression. Intellectually I understand gender is a spectrum, but it’s hard for me to conceptualize that spectrum in any real meaningful way. It’s not tangible. I just know what feels right and what doesn’t. What some understand boy to be vs. girl does not land with me because we’re all just human. I have said before that I often wish I could just say my gender is “human” and call it a day.

Growing up, I didn’t want to be a boy, nor did I want to not be a girl. I just wanted to be me.

In looking back, it’s fair to say I wanted the social gender of “boy.” I didn’t care about genitalia, but I knew I wanted shorter hair (because long hair for me is sensory hell) and to be treated like “one of the guys.” And then puberty hit. My “weirdness”—I was still learning how to mask my autism effectively—already threatened me with ostracization. Therefore, it became abundantly clear that if I wanted to fit in at all, I needed to commit to the greatest acting challenge I’d ever have to take on: the role of “girl.” I participated in traditionally feminine rituals like doing make-up, wearing heels, or “gossiping,” because I desperately wanted to be included. All of it made me incredibly uncomfortable.

Making friends in the moment isn’t always hard, but keeping them has been a life-long challenge. So I played the part, and failed a lot. Instead of being true to myself, I put on mask after mask, to hide my quirks and to show up in the world as others expected me to be. I lost sight of who I was; even though I was performing gender the “right” way for the most part, I still didn’t succeed at keeping those friends. I have now learned that the more I am authentically me, and loud about it, the more the right people come into my life and stay.

I was forced into this box of femininity that did NOT serve me. I never saw myself like I saw the other girls, and never felt like I belonged. The only time I’ve felt like I’ve belonged was when I got attention from men in college. It was not an intrinsic sense of belonging, but a contentment that came from seeing how I was being treated just like the other girls (hello trauma).

– Me, again from the post Nonbinary and Me

It’s difficult to explain how I didn’t see myself like I saw other girls. It might be more accurate to say that I didn’t see myself as I projected how other girls saw themselves. And it didn’t help that my body didn’t develop in the same ways either (short stature, small chest, more of a square but pudgy middle, thick thighs). It was hard to ever feel beautiful, especially as I never felt like my outer appearance reflected my inner self, though I didn’t know why. No feminine expression ever really felt right. The most beautiful I ever felt was in a messy bun and sweats. In fact, that was when I got complimented the most. I theorize it’s because I was comfortable, and therefore more able to be authentic. It never crossed my mind that I could be something other than a girl, not even when I encountered trans people for the first time and started to learn about how I fit into the LGBTQIA+ community in sexuality (probably because nonbinary wasn’t a part of that world yet in the way that it is now). Every instance of “failure” I experienced at performing my gender directly affected my intrinsic sense of self-worth. Instead of “failing at being a girl” it felt like I was just failing at being human, at being me. And I really couldn’t understand why that was.

A lot of trans people have said and will continue to say, “Oh I’ve always know I wasn’t my AGAB.” These folx usually have stories to tell of how they defied gender stereotypes for that explicit purpose/understanding. For me, I’ve always known I was different neurologically (maybe not in those terms, but I knew I was different and that I couldn’t change). Gender, however, was never questioned because I was never presented another option. There are girls, and boys—that’s it. My version of “girl” growing up was “tomboy.” And after a certain point, “tomboy” was no longer acceptable.

And so, there was a complete disconnect inside of me, and not because I wanted a different gender’s body. I wanted a different body alright, but a different “girl” body so that I could pass as a girl better. All I wanted was to be a perfect daughter and someone a man would find worthy enough to marry. These were the virtues I was taught took precedence, even over my intellect. I could go to school and get a good job, but it really didn’t mean much unless I got married and had kids (as is the plight for women under the outdated rules of patriarchy, especially those who are consumed by the Christian Church as I was then).

In my brain, I’m just human–without qualifiers. I’m just ME.

I’ve said in the past that I feel like all the genders at once, or none at all, or I’ll slide fluidly between many. But that was only an attempt to describe how much gender just doesn’t work in my brain. Those were the words I knew to use to convey how things work for me, as best I could. Nonbinary has worked, but it’s been like wearing a shoe that’s just barely too tight. You can get away with wearing it fine for a while, but after a whole day of walking around, you’re sore and worse for wear. It’s a bit stifling. Suffocating. It’s still a box, even when there is no right or wrong way to be nonbinary (it’s paradoxical because there’s no right or wrong way to be any kind of gender). For this reason I sometimes prefer genderqueer to nonbinary (it conveys more room to move around in for me). I’d rather just not be a part of the system at all though. I’d rather be a constellation of what makes up ME, where I choose the things I do and do not like and exist as a human on this earth without being forced into labels or skewed understanding. Adding “autigender” to my nonbinary label, then, allows me that liberation from the whole spectrum even as I operate within it.

I do believe my neurology has played the biggest role in not only trapping me into “womanhood” for so long, but also in my liberation from it. I was a girl for so long because my environment told me I was. Many autists are very literal people, myself included. I just accepted I was a girl, and a poor one at that. I couldn’t truly grasp gender before, but now looking through the lens of my autism, everything just makes sense. I needed new information and a safe space to try other identities on, and I’m so grateful that’s what I found myself in just a few years ago, and continue to find. Give me the space and tools to be creative, and I will create! And man did I ever create a masterpiece, one that is wholly reflective of who I am and not who I was projected to be.


Exploring gender, sexuality, or neurodiversity? Remember, everything is at your own pace. And I can help! If you’d like to talk with someone about what you’re going through, I offer consulting services on a sliding scale. Please don’t hesitate to reach out through the contact tab on the main menu. 🥰

And soon I will be offering life coaching! Stay tuned!