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BOOK STUFF | The Effects of Systems (Patreon)

Published:
2023-04-28 18:59:05
Edited:
2023-04-28 19:36:11
Imported:
2026-06
Tags:

Content

Hello Brains!

I'm in the final-final crunch for what I can add to the book! And I need help with your stories one more time!

It's about systemic issues, and what often gets in our way and thus makes our ADHD life even harder.

For context, here is the paragraph just before where we're going to add quotes:

Systemic issues are a lot of what was getting in my way, and they continued to get in my way. They were the reason why I even needed half the tools I was using…and I was not alone.

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What I'm asking of you...

What systemic issues are you running into that make you even need your ADHD tools?

What systemic issues do you run into when you're trying to ACCESS or USE your ADHD tools?

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PLEASE REMEMBER TO INCLUDE THE FOLLOWING...

- Do we have your consent to use this?

- Do we have your consent to edit the quote for size?

- We quote using name, age, and location; what name, age, and location would you like us to use? (You can choose a different name and age if you'd like to protect your privacy! And location you can make it as broad as your country, or as narrow as your state/province, if you're comfortable sharing at all. If you aren't comfortable there, no worries!)

-----------------------------------------------------------------------------------------If you have any questions let us know!

Thank you so much everyone!! Your stories have been incredible to read through all of this. ♥

(Here are some examples!: Trying to get a refill of your meds, so you have to use a lot of reminders to try and stay on top of it, and <insert tools to help with making phone calls>. Is one where a system required tools to use.

Then work bureaucracy around accommodations could be an example of when systemic problems got in the way of you getting support or tools.

But it can be for any system. Work. School. Government systems, even.

Like in school... we have to find tools to be able to sit still instead of being allowed to just wander around the room while the teacher talks, and writing notes on our phone.

Systems is left intentionally bored, however, to cover various levels of systems and systemic issues.)

Comments

John Gnassi & Deb Sutliff

I struggle a lot with time blindness. One of the biggest issues I have struggled with is vague references to time. "Get back to me soon." "Get it to me as soon as possible." We all say these things, but I have learned the hard way that references to time mean different things to different people. Does give it to me Monday mean Monday morning, Monday lunch (before or after), Monday end of the business day, or Monday when I stay till 2:00 a.m. on Tuesday to get it done because it took longer than I expected? Timelines, deadlines, bottlenecks, and dependences are critical skills of executive function that I struggle with. I have plenty of tools to use but I find it exhausting to feel like every little project I do really could use a Gantt chart with dependencies and responsibilities along with timelines and deadlines if I want to succeed on the timeline that I said I would meet, that somebody told me to use, or that I need to meet. Deborah Sutliff Family of 3 ADHDers Fulltime RVer (Anywhere & Everywhere USA) Full permission to use and edit as necessary.

Eric Hyro Weatherhead

Personal info: Hyro, 34, Canada Consent granted, including consent to edit for size! Systemic issues: - #1 issue? A disorder that impacts attention often requires precision and consistency to manage effectively. Take meds, daily, the same time every day. Eat small snacks and take breaks, at regular and consistent intervals. Don't forget to go to bed in good time! Otherwise it will be *even harder* to remember and have attention ready to use the *next* time sensitive tool/resource/coping technique... - Doctor appointments to get the "help brain work" medicine require a lot of brain work! Make sure to plan ahead for booking your next doctor's appointment so you don't run out of the meds that help you plan ahead. (note: your doctor may need to regularly reschedule and could be running behind, and likely requires you to commute to their location in person for the 5 minute conversation, but don't accidentally forget your appointment or there's a $$$ fee and 2-5 week rescheduling delay). - When self management feels like: "Remember to expect that you might forget something or lose track of time, so try to remember you should give extra time and create extra reminders (but don't forget what all the reminders are for)."

Selphis

My main problem is expectations of productivity. Simply put, people expect me to work 8 hours a day but I can't focus for that long unless it's a massive deadline and I won't be able to focus for days after if I do. I'll have periods of high productivity where I'll get stuff done 10x as fast as my neurotypucal colleagues, and then go back into not getting anything done for days. But you can't sit in an office watching YouTube videos all day... Koen, 33, Belgium, consent given to use and to edit.

Sylfie Tabai

One of the systemic issues that I think is hardest for me to accept is the idea that we all need to stay employed at all times to have access to basic essentials. In the US, the cost of healthcare alone is enough to feel like working is mandatory unless you're old enough for retirement / social security benefits. If we're lucky enough to work in a field where we have options, we can at least move to a job we like better... but the involuntary nature of labor in our society, combined with how alienated many of us are from our work, feels like indirect slavery sometimes. This inequity is difficult for everyone, but it seems like people with ADHD have a much harder time coping with being forced to do something they're not engaged in. We all need time to pursue the things that are self-actualizing for us, but I think that need is far more crucial for ADHD brains. Otherwise, it feels a little bit like telling Leonardo da Vinci he has to pick art or science so that he can be employable, rather than allowing people to pursue meaning in everywhere that we feel called to act. (please feel free to quote me, Shawn Tabai, 39, San Jose, California)

Eric Hyro Weatherhead

Personal info: Hyro, 34, Canada Consent granted, including consent to edit for size! Systemic issue: The fact that meetings and appointments need to start and end on "round times" (if not exactly on the hour). I'm ready at 10:52, now I need to fill the next 8 minutes...while being careful I don't accidentally try to finish something (or forget to constantly check my clock) and end up realizing it's suddenly 11:04.

Ash W

(I consent to using my quote and editing it! I'm Ash, 27 this year, living in London/Singapore) 1) What systemic issues are you running into that make you even need your ADHD tools? I moved overseas 7 months ago but I've been living with my partner for the last 6 weeks and the difference in my quality of life is ridiculous. I struggle to feed myself and keep my tiny dorm clean, on top of keeping up with my academic deadlines and the general academic rigor of my master's degree. It's taking me all of my medication and every last spoon in my metaphorical kitchen to keep myself functional. But living with someone who's less neurodivergent than me has made a world of difference. They cook, I clean. We buy groceries together, and we take out the trash together. There's so much less worrying because I'm living with someone who always has my back. 2) What systemic issues do you run into when you're trying to ACCESS or USE your ADHD tools? The biggest systemic problem I'm facing is the inaccessibility of medication, especially since I've recently moved overseas. It's largely because of a fear of drug-seeking behaviour and how we fear and detest drug addiction because we think it's a problem of personal responsibility and moral culpability rather than a public health problem (and so on). And it's especially ridiculous because everything else was super accessible too. I had a medical diagnosis and letters from my psychiatrist, so I received academic accommodations within a month of applying. The GP saw me within a month of me arriving here, but somewhere in between the aforementioned fear and the UK's strikes and the T*ries defunding the NHS for the last 12 years, it's taken me 7 months and counting to finally receive an appointment with someone able to prescribe me my medication.

Tanya Keenan

I was 20 years old before ADHD was even in the DSM (1987), and at that time, they were diagnosing mostly boys. So, systemically speaking, not even being *seen* has been a real issue. I was not seen because I am female and I have not been seen as an adult with ADHD (please see my example below). Shame is a huge part of ADHD-related executive dysfunction. The executive dysfunction leads to shame, which inhibits ExFx, and so on. And shaming seems to be in the neurotypical toolbox when dealing with us. A shame spiral can lead to a debilitating panic attack (ask me how I know) that can not only make someone late to an appointment or late finishing a task but can keep them from doing either of these things at all. These two things - invisibility and shame - play a large part in the systemic need for tools. And they also cause a block to getting/using those tools. One of the biggest systemic issues I've encountered to access tools is that the people offering tools are too often neurotypical. So, they're trying to make me behave like them, and it doesn't work. My brain is just different. For example, a friend came across a planner (a physical book planner that I naturally have since lost) that was called an ADHD Planner. First, it was geared toward students (so it didn't apply to me as an adult woman in her 50s, but maybe it would be helpful for some of my clients). But it also used such shaming language in the introduction, saying that people with ADHD won't be successful without being able to squeeze into this normalcy box. I would never tell a client of mine that. The shaming language overshadowed any helpful part that planner may have provided. Second, it's a physical book and I've already lost it. Third, and this is one that I find throughout executive function tools, it asks us to estimate how much time it takes to complete a task. How should I know? I have time blindness and can barely get to work at a somewhat consistent time. I can't tell the difference between 5 minutes and 30 minutes. How am I supposed to figure out how much time it takes to complete a task I've never done before? Or a task that I avoid doing because I don't know how long it takes? Or a task that seems to take forever because I get distracted halfway through? The planner I mentioned above was obviously not user-designed. We need tools that WE, as a community of neurodivergent folks, design, produce, and market. Tanya Keenan, MA AAC Mental Health Clinician Age 55 Edmonds, WA You have my permission to use this quote and edit it as needed, because I know I'm verbose. Edited to add: I have an amazing therapist, but even he didn't believe me at first about my suspicions about ADHD (I figured it out because I have so many clients with ADHD and their symptom profile was...oddly familiar). But all he could do was give me a brief screening for adults (he took one look and laughed and said, "Yeah, give this to whoever does your eval."). But he refused to evaluate me himself (because insurance companies will often interfere and challenge diagnoses and a colleague of his was sued over this, despite being a neuropsychologist). So, I had to go in search of a good provider to evaluate me. I went through insurance, and tried two different people who were recommended to me. No response from either (to this day, a year later!), so I just went through the regular channels with insurance to get a general referral. I've been quite lucky. My evaluator/prescriber has been excellent and she has supported me quite a bit. I am also blessed to have a job where I don't have super set times to be there or to leave (although my boss really struggles with me staying too late.) Other systemic issues: the Adderall shortage. I've just gotten a text that says my medication that allows me to function is delayed. Someone else talked a lot about masking and I just have to say...after 55 years of masking, it's really hard to figure out how to act now. Do I embrace the chaos? How do I clean my house? I worked full time and was in school/internship and now my house is a disaster and I don't know how to get the spoons to clean it. People say, "Do one corner at a time" but that corner - every corner - is a Wall of Awful.

Sarah Pillari

Astriid (Not gunna use my real name), age 34, lived in Chicago, IL - Ft. Lauderdale, FL - Boulder, CO and soon moving to Yorktown, VA (edit-- you may edit/condense this down if need be) While I do not know how things will be in VA, I can say for a fact that the only place I've ever felt 'safe' to be myself has been Boulder. Most of my trauma happened when I was in the Chicago area, the majority of it relating to the systems of the USA (medical/government/school). Ft. Lauderdale was a nightmare of its own but I don't think it was about me having ADHD at that point. That was something else entirely. In regards to what I experienced in Chicago, it was in the suburban areas that are very well off. It was also heavily influenced by religious culture. I never got my official diagnosis until end of summer, 2020, when I had just turned 32. Before that, I had been stapled with the assumption that I simply had depression. This is because when I was growing up in the public school systems, girls typically did not have ADHD. Only extremely rare circumstances would they get that diagnosis. So, no one knew what was "wrong" with me, except that was I was an obnoxious freak no one wanted to deal with. Girls were meant to sit still, be pretty and be quiet. In fourth grade, our school had to take one of those tests that would "help" the kid determine what kind of career path would be suited for them. I wanted to be a vet at the time because I loved animals. Where most other girls in my class got things like "Teacher", "Vet" or "Nurse", I was told the best thing I could do was be a home maker. Being told "At least you're pretty. Maybe a guy will marry you and you can just live at home and have kids." Ouch. Not having the support from any figures of authority, even my own parents, to understand what was different about me warped my very identity. It warped my understanding of expectations in life. It set me back so much in so many ways. Medication after medication for depression, the majority of which simply made me feel numb. But I was always exhausted, I was always fog brained, I had quickly accepted the labels of "black sheep", "unwanted", "lazy", "rude", "inconsiderate", and "stupid." My dad still tried to push me to give college a try, and I did it as a weird mix of "maybe I can make this work" (it was an art school) and "I'm doing this for him." College wasn't a whole lot different. None of the therapists I had been in touch with nor any of the medications I had been on helped a whole lot. At this point, I was just mimicking motions and actions, trying to blend in and do what everyone else was doing - go to school, get a degree and get a job. I had my fair share of working in retail at this point as well and unfortunately the crap I had to put up with there was very easy to let slide because I had assumed all the bad things that happened to me, including being assaulted, were my fault and I deserved it. If I had just done something differently, I could have prevented it, but no. The world had taught me that it was completely my fault when these things happened, therefore, I deserved it. I didn't complete college. I got hooked into video games and moved in with my mentally ill mother. I dropped out to keep working at that crappy part-time job, still confused why I could never get anything right, why bad things kept happening to me and it felt like there was nothing I could do about it. I've since come to learn that these are all things that get taught to many girls/women across the country, ADHD or not. So it wasn't just hidden ADHD that no one wanted to deal with, it was trauma, and it was my gender. It was simply being different. The system the USA uses is unforgivingly ridged. It feels like being trapped in an abusive relationship. The constant gaslighting from our culture that tells us that if we fell through the cracks, became sick and homeless, then it is our fault. We just didn't try hard enough. I have come to discover that ADHD is not a curse like I originally thought. It simply means I am born different. I am born with a brain and nervous system that absorbs all information around me in HD 4K and it is difficult, if not outright impossible, to filter out. Yet our system expects humans be work like programmed cogs in a machine. Linear, obedient and compliant. Because I absorb more information faster than others, at a higher definition, I am easily overwhelmed. I am very quick to burn out. But that doesn't matter to the system here. Be it school or work, we are demanded to constantly 'GoGoGo'. Rest is for the weak. I am not allowed to rest when I need to rest. I am not allowed to work or take care of myself in a way that works best for me because it is inconvenient for the rest of the world. I am not allowed to be me. I never was allowed to be me. I was never human in the eyes of this country. The sad truth is, ADHD or not, humans are a resource first and foremost. Many suffer from far deeper oppressions than I have because that's a feature, not a bug. No one is allowed to be human.

BeanMcKnee

When I was still a programmer, we had way too many (online) meetings imo. During no single meeting was I ever able to sit in my chair and listen and pay attention. Most of the contents did not even concern my work. So I had to mute my mic and fidget with sth, usually my pen or a Rubik's Cube. Finding a therapist was tedious too. Especially since I was insisting of someone where the chemistry fits. It took me almost a year worth of phone calls, excel sheet edits to document the progress (or lack thereof) and procrastinating since I dreaded everything so much and have always had poor executive functioning. But I finally got on the waiting list with the one therapist I was 100% convinces of since I introduced myself so I quit calling around, put everything on one card and I finally got the slot. Also, why do I need to see a doctor every time I need my meds refilled? Why can't there be a central database with all my patient data from all doctors with all meds so I just need to go to the pharmacy, they look it up, hand me my meds, I pay, I leave? That would be one less step. One thing less to forget or climb the Wall of Awful™ for. Paperwork in general is an obstacle for me. The more of it I have to do, the more likely it becomes that I don't do any of it unless I really have to (like e.g. my taxes, gotta do those *sometime*). Thankfully I have a functioning Last Minute Turbo in my brain so I just do the taxes one day before the deadline. Marcel, 42, Bremen, Germany You may use and edit it :)

Alanna Risse

Alanna, 52, Portland Oregon Yes you have consent to edit! My 12 year old daughter started having serious issues at school this year. Her teachers said she had trouble knowing what she was supposed to be doing and when things were due, was inattentive during class, and was disruptive or distracted. I’d suspected she had ADHD since elementary school so I started looking for places to have her diagnosed. It felt impossible! Most places either were no longer accepting new patients (even for their waitlists!) and other places didn’t take our insurance. During this time I realized I had been struggling with ADHD my whole life and was never diagnosed! I did a ton of research and found an ADHD specialist for me but couldn’t find anyone in person for my daughter. I wound up going through ADHDonline.com and paid for an assessment for her. It’s a very long form that you fill out and a psychiatrist gives you a formal report that you can take to a doctor for treatment plans. Now we’re running into problems with a shortage of meds on the market. We have to choose meds based more on their availability than on their effectiveness.

Francesca Kuehlers

In theory, the German system is kind of better than the American. I was able to have my ADHD recognized as a disability on the scale of official disabilities. But.... they need you to fill out forms and submit them. In order to show you.... have a disability that makes it nigh impossible to fill out forms and submit them. Once I had them in with help from a body double, the people in the offices were all really nice. Helped me actually fill out the following rounds of forms. Told me exactly which types of pages were missing. Offered to make an appointment so I could come in and fill the forms out *with* them. (Took those offers) I'm now waiting to see if I can find some kind of helper.... assistance.... person to support me. Have been waiting to hear back for 4 months, not knowing if I even had the forms right, and suddenly they're all "I found someone, can you come to my office and see if she's a good fit next week?" Luckily, the office in question is literally across the street! Let's see how this works out. Francesca, 37, Berlin (from the US)

Kae(NWPA)

It was always hard for me to read and remember. I either had to re-read it before moving forward or write it down and read my notes a few times.

Kae(NWPA)

I absolutely hate to fill out forms! I dread when I have to do it but usually don't like to ask for help unless desparate!

Ben

I do have something to say on this but I can't write it right now so I will write it tomorrow. I hope that is OK. :-)

Todd Holdsworth

44 from Brisbane, Queensland, Australia Use what you want and condense as needed 👌 So I've spent 12 years getting diet, exercise, sleep and stress all managed and at good levels, and have fully accepted my diagnosis and am no longer beating myself up mentally for not being the most productive person every single minute of the day. So coping well. Then work comes along wanting to increase my output, even though it's been OK and I've been doing a good job based on feedback. Love my job and everyone I work with and under, but this kind of thing has the potential to really upset the balance I've tried so hard to achieve just to maintain a 'typical' lifestyle without it being full of ADHD stress/tax. How do you say 'Why change things when it's all working' without sounding like you might no longer be fit for the job you're doing? It's just typical management strategy to see how much more efficient things can be made, which I get. But it's the whole thing of having a much bigger workload and barely coping, or burning out enough that you have less to give your partner and family, and that doesn't seem fair.

Madalayne Rockarts

Madalayne, 23, Canada (consent to use and condense) I never realized how much work is required to find a therapist that is a good fit, until a couple years ago when I was in a really bad headspace, and the only energy I had for months was put into just that. The process of looking for, meeting with, and finding a therapist that can understand my ADHD brain was a lot more not ADHD-friendly than it should have been. The phone calls, the notes I had to keep track of, the reading of the bios, the compiling of questions to ask, the scripting… I went into this process with some tools I always use to help me stay organized, (planning a system of organization in advance, writing everything down) and I tried to use them in my hunt for a therapist. I never really referred to my notes but they kept me mentally organized amidst a sea of therapists. I went into the process just hoping to find someone competent in ADHD and life transitions, and I burnt myself out so hard doing this. It took me about a month of consultations and meeting with over 30 therapists that weren’t quite right, only to land on one because I was burnt out and desperate. It made me realize that I am a perfectionist (as many of us are) and I’d turned looking for a therapist into this big task that I could ONLY do if it was the ONLY thing I did with my time - the difficulties I ran into made me worried for those ADHD brains who don’t have as much time and energy to find a therapist as I put into it. What then? After I stopped seeing that therapist, I didn’t look for another one (despite my need) until a year after, because I knew and felt like it was this monumental task that required so many moving parts. I just let my mental health decline instead. Mental health issues are extremely prevalent, on top of the ADHD struggles we may face, and finding a therapist should and can be way more accessible than it currently is. Especially for those with executive dysfunction. Facing barriers to tasks like this, means a LOT of people not getting needed support, thus perpetuating poor mental health - it’s a positive feedback loop in a system not designed for people like us.

Ken Mc

Ken M., 52, Wisconsin. Consent given to use and edit for length. ADHD, sigh, people talk about hurdles, but I liken it more to a steeplechase. The barriers are more than a mere hurdle and sometimes there is pool of confusion even after the hurdle is seemingly conquered. Later-life diagnosis can come with a unique set of system challenges. The two most notable, for me, are; navigating a life built with the broken tools of unmanaged ADHD, and therapy/self-education. To the former, I was diagnosed in my mid-40s after a life which, on paper sounds really interesting. I lived many adventures from my late teens through my early 40s, I am reasonably successful in my career, I am in a stable relationship, live in an upper-middleclass suburban neighborhood and have a wife who is passively interested in what goes on in my life. What is not mentioned in between is the chaos. I did not build the life you see today. My wife did. I just live in it. That may sound cold, but after the train wreck of a life I had lived up until I married her, and even a few years after, I knew I couldn't live on my own. I was a font of unlimited potential with no focus and very little control trapped in a mortal body. My wife provided a more "normal" template for me to direct that energy, but until I was medicated, that was barely contained. It was going to be 15 more yrs. before I got diagnosed and medicated, and 7 yrs. after that that I found, what I think is, the correct dosage. So, all that lived experience and the "systems" I cobbled together to try and be "normal" or at least useful, are a collective trauma "system" I live in now. On the surface my life seems normal and stable. In many ways it is. But it is not a life I created. It is a life I have acquiesced to. I tried to shut down the trauma system by applying the second part, therapy and education. Many people have touched on the difficulty of getting therapy so I won't delve into that except for one item. How on earth does a therapist expect a person to crack the chest open on their life trauma and address their ADHD in a 45 min session and then just walk out into their life like everything is ok until a week later?! It like sending an addict back to to live in their crack house between counseling. I felt very alone. Even when I told people, it was more like, "Sure. Whatever. Hey, we need to go grocery shopping. We need you to help with this or that. This problem need your attention. Why isn't this project done?" Life continues like your diagnosis isn't real or important. No one wants to deal with your diagnosis as adults. Everyone has their own "stuff" to deal with. So, after diagnosis, I floundered for a few years. Meds helped, but were always lacking. My PCP would ask if they are helping and my response, even after increases over the years, were, "Yes, but I don't know if this is as good as it gets. All I have to compare it to is what life was like before meds." I was better, but not good. Then I started to research my diagnosis. I started on Reddit. I learned a lot. I listened to stories. I commiserated with my new found "tribe." I was chastised by the "otherside" of the ADHD Community for expressing the term "neurodiversity." Yep, there are sides in ADHD. I found YouTube channels. Then I stumbled into TikTok. The online expression of the ADHD "crack." I was taking in so much information I was starting to lose context. My mind exploded with information. My hyperfocus went nuts. My tenacity as a computer diagnostic technician to find the source of my memory leaks, bad code, crashes and occasional BSOD led me into the alphabet soup of comorbidities, off-lable medication theories, and bleeding edge research. I thought I had everything, ADHD, OCD, ODD, Autism, BPD, and any number of non-official sub-conditions. Then I learned about masking. O…M…G… masking hit me like a ton of bricks. I always new it was there. Now I new its name. And knowing a demons true name gives you power over that demon, but not the instruction manual on what to do with it. I could visualize my mask for most of my life. It existed as a thing in my mind that hung in front of me. It was this mashup personalities I needed to project depending on who I was with or where I was. It was bits of colored patches, chicken wire, duct tape, and glue with two eye holes and a weird grin. I spent 2 yrs. reading and trying to understand what I was thinking and what life traumas led me to this point. I tried to take the mask off and realized that there was barely a person left behind the mask. I had been masking for so long the "true" person behind the mask never fully developed as a person. I wasn't in therapy at the time. I was out in the wild questioning every shred of my identity while under a mountain of external life stressors. I was a wreck and I was losing my tenuous grasp of what little self-identity I have. The mask was my system. Flawed, scarred, broken and repaired with a butter knife and a hot glue gun that were my life experiences, underperforming meds, and good, but inconsistent therapy, up to about age 50. The mask was coming off whether I liked it or not. I knew it's name. I started online therapy. It was that or the "alternative." I was coming off 5 years of family upheaval, aging family members needing to be relocated, cared for, dying, more family members needing my help, more work than any one person should have to deal with and starting to come unglued from my mask. It was a stutter step entry into online therapy. 1st go wasn't so good, but the therapist called me out on some stuff that I needed to address. Maybe not the best way to handle it, but t got me to snap focus back into a more rational framework. 2nd therapist has been a better fit, though, they probably don't challenge me enough. I upped my ADHD meds a few months ago. This new dose is about as reformational as when I first started taking them. I have much more control than I ever did. I may not be done on this trajectory. All of this is simply due to a lack of education about my diagnosis. Someone might tell you what the diagnostic criteria is in the DSM-V and give you a thumbs up or down on having the condition, but no one I have come across in therapy has been able to walk through my life and show me why I am the way I am today. Every therapist is like an IT person. They all have their own way they were taught or learned. They all have their silo of knowledge. They all have their preferred methods and proclivities in practice. And they are, almost, all overworked by a system that only sees their value when things break. The "powers that be" blame them for stuff breaking but never want to fund them properly. We, the broken Biological Computers, BCs, are simply left to our own bad code. We might get patched once in a while with therapy or meds, but at our core, the code is always flawed. If someone notice the flaw early and can apply the right fixes, the BC might run pretty well for the remainder of its life. An older system, built with severely outdated code (social engineering) is heck trying to reprogram. A lot of older BC programing was belted on and verbally soldered to our processors. Not to mention, the people that built us and the users that are familial with our way of operating tend to get upset when their BC suddenly becomes more unstable while attempting to reprogram. The BCs builders really don't like being asked why they programmed us like this. Don't even get me started about the other BCs that were built around the same time and their reaction to "one of their own" attempting a reprogramming. That can easily lead to an existence in a network of one or worse. The thetapist/IT is only focused on what is broken now, and how to make it work going forward. Seldom are they allowed to fully examine the architecture and assembly for the flaws that caused the fault or are given the resources to address that bad coding. For their part, the BC in question, especially and older one, is the least able participant to execute the reprogramming given the networks we are usually connected to. You'd almost need shut down, disconnect from your network entirely, reconnect to a network of similarly flawed BCs for a few weeks or months, to begin to address a lifetime of corrupted programming. How I wish for an adult ADHD summer camp, where each person would have a dedicated therapist for 3 hrs. each day, two weeks of deconstruction combined with shared experiences in virtual and in person groups, and three weeks of life hack learning and practice. A paid agent will replace you irl so home, kids and work won't be an issue. Oh, and internet access for one hr. 3x/ day at 7am, 12:30 pm, and 7 pm. When I win the billion dollar lottery, I will make that happen.

Grace

Grace, 31, New Zealand. Permission to edit and use granted! I struggle to prioritise things and this affects how I spend my time. I am often late because I need to clear the kitchen bench, put clothes away or do Just This One Last Thing That Must Be Done before I can leave the house. I use deadline pressure of going out to stay on top of chores/self-care tasks. Self-care in this case means the burdensome things that help me to feel less stressed later, indulging in luxuries is a different thing. I am not going to take a bath 30 mins before I need to meet a friend, but I might try and finish my tax return!

Jabberwocky (Jan H. H.)

I'm blessed with a good insurance however living as an expat I ran into the issue that my insurance asks an estimate of costs to even only get a testing day. Two providers did not do this. One refused, the other seems to play on time. I'm currently thinking if I should go and look for another provider or get tested in Germany, where an estimate of costs is common procedure. I'm not desperate to test using medication, but I'd like to see what it could do for me. So far I only got a diagnosis from a psychologist, that is not enough in the Netherlands to have ADHD medication prescribed. You can use this story, my first name and edit in case you'd like to use it.

SpinachRules

Editing okay, use name/details: Dana L., 61, Canada. —Requesting workplace accommodations in a large public service bureaucracy, requires me to “pathologize” myself with my employer on all the forms I have to complete, and with family doctor. Pathologizing (à la DSM), requires me to focus (pun intended) on all the negatives - what I struggle with, what I cannot do the same or as well as what is expected of neurotypicals, having limitations, impairment, disability. And I have to censor what I do share, so that I don’t risk giving management reasons to doubt my ability to do my job—especially since societal stigma and stereotypes are still rampant. All this runs counter to my efforts to embrace and use the language of paradigms of neurodivergency, and as I so much desire and strive to live my authentic self instead of masking (which I did unconsciously all the years before I figured it out and was diagnosed), it now seems that if I want to receive accommodations at work, I have to don a mask to hide myself in order to “play the game”.

Fiona Olldashi

Fiona, 30, Maryland USA, and permission to edit. One of the main systemic problem I have experienced is having trouble remembering and doing chores around the house. My fiancé created an app that we both access and is very easy to use because I used to complain that most to do apps out there makes you to jump through many hoops to get stuff done and mark down what we need, so he was like im creating this and we both have access, and we both mark down what we have done and what it needs to be done. He also made a tab on the app that says if I need help or I can take care of it myself. Has been very useful and helpful.

Sarah E Meagher

Sarah, 46 Virginia USA permission to edit, consent to use. Three ADHD people, one family. Oh, there are so many. I will probably come back and post again. Home-following through on simple cleaning tasks (putting things in the dishwasher, clearing off counters, sweeping, dusting, vacuuming. We don't do them. My husband and I discuss how to do them again and again. But we never consistently follow through. We try to use apps, but again it still doesn't happen. We both are old enough that we don't use electronics that much. Inadequate insurance and I don't work enough to get good insurance. The meds that work for me are not covered. We have a high deductible (who doesn't get one these days), and most of my visits for my mental health and my daughter's mental health are not covered; it's a good amount of money per month; things are expensive enough that I push back, my eye appointments and dental visits as much as I can so I don't have to pay extra. School systems: Standardized Testing! ARGH, My daughter has had 3 different ones this year, but I think those are simply for school knowledge to see how much she has learned this year. She has her state-wide ones for the first time this year; all we have focused on for homework (technically only once a week) since February is practice tests. Sometimes she has to answer 30 questions. The tests measure nothing for her but how well her teachers are doing. Not only do I not like testing children this way. I find it entirely unfair for test teachers this way. My daughter would get so stressed out she would fly through the test to get it done. But now she is stressed out and feels she must do well to reflect on her teachers. (This part may be a random rant). Communication expectorations with schools. My daughter has 504. It wasn't until we met to renew the 504 this year the school told us that her bringing a stuffed animal to school was an issue and wouldn't be allowed for the standardized tests two months after the meeting. She had been bringing the stuffed animal since the beginning of the school year. No one told me they didn't want it at school; from what I have picked up I was just supposed to know it wasn't technically allowed, and it was an issue. I admit I knew it wasn't allowed, but when no one said anything to me specifically, I assumed she was keeping it in her bag or desk, and it stayed there. It wasn't the case. I felt blindsided by the issues. I am working from home or doing paperwork. I work in early childhood intervention. I don't even have an office. I see my colleagues maybe once a month in person if I am lucky. Seeing my coworkers helps me keep on track and be more enthusiastic about my work. So not having an office stinks. All the paperwork stinks, as I can't keep up with it. I have not every contact with people, if things are canceled etc. All of which I know is important, but to remember it, I have to write it down so I can do it later, then I have to find the time, then get into the program, and it goes on and on. Not sure where this one would fall. But try to write me a to-do list on paper, and sometimes my computer (this is an issue in itself) keeps track of my to-do list. I also take notes for work. When I don't remember something from work that goes on my to-do list, I struggle with where to put it—remembering to recertify as a teacher. I don't teach in a school, and my company doesn't keep track of my teaching license. I have to keep track of my credits and classes all on my own and know when to reapply. This has gotten me in trouble in the past. I pretty sure this is more personal complaint then much about systematic issues but I am going post now and come back to edited later.

Sheela Devadas

I grant permission to edit and consent to use my quote; for name my initials SD can be used. Age 27, location Pacific Northwest of USA. The systemic issue I’m running into is at my job as a post-doctoral researcher and lecturer. As a young-ish woman in a male dominated field I am often asked to be LESS of an “absent-minded professor type” than my male peers and than my older male mentors, even if they are neurotypical and I am not. In any group where I am the only woman, the responsibility for scheduling/setting the agenda and planning somehow ends up on my plate. This is regardless of if I’m working with a mentor, my peers, or even with my students or teaching assistants. While I do have a lot of systems in place of my own to deal with my severe absent-mindedness, forgetfulness, chronic lateness and lack of organization, it’s exhausting dealing with everyone else’s as well.

TinyFrenchOwl

Owl, 28, France. You have my consent to use this and to edit the quote. There is an immense lack of awareness of ADHD, and even once I suspected I had it, it was very hard to understand what steps I needed to take to get diagnosed. Even now with a diagnostic, my psychiatrist offered no help to make the various appointments for exams that would clear me for medication use. Even though finding the right medical professionals and booking appointments was made harder by executive disfunction. Similarly, there is very little awareness of how to obtain a "worker with a disability" status, what the accommodations that provides, etc. I only heard about it from a neurodivergent friend. None of the medical professionals I've talked to about my adhd knew anything about it. Getting only 28 days of meds means a careful balance and a lot of scheduling so I don't have to miss a day which doesn't go great with adhd. And even with the best scheduling, well. My psychiatrist didn't have an early enough appointment available this month (or it was too early and that doesn't work either) so I'll have to go 8 days without medication before I can get it renewed. The expectation that as we grow up, we just learn to function (keep our room tidy, hand homework in on time...) without being told how to. Especially with undiagnosed ADHD, I could have done with more explicit guidelines and expectations.

Jennifer Levenbook

Jen, 40, North Carolina, 3rd Trimester Permission granted to use, edit, remix, and make derivative works. Please edit for spelling! Let's talk monitoring for Gestational Diabetes Mellitus because that's where I am in this pregnancy. I have been handed a kit with instructions to prick my fingers four times a day and for three of the pricks to do so exactly one hour after the first bite of a meal. The kit has resources in it to manage: lancets, test strips, and alcohol swabs, all of which steadily decrease in number when used and can only be carried in small quantity in the travel case, anyway. I have ADHD. I have difficulty identifying the exact moment of my first bite of a meal because I graze constantly throughout the day on small amounts of foods. A handful of almonds here, a cheese stick there, and, oh, trail mix. Don't forget the trail mix. But they do not want me to test my blood sugar after snacks; and my diet is nothing but snacks. Healthy to be sure, but all qualifying as snacks. Yet let's pretend that barrier didn't exist where now I need to change the entire way I eat just so I can provide data the obstetrics system can parse. Even then, one hour? Good luck kids, I am time blind. Nothing in my kit is a one hour stopwatch I can click a button on as I pop the first peanut of my trail mix into my mouth to start the count down. That, I have to carry separately which does not fit into the kit case; we cannot point of performance this one. So of course it gets left behind. As does my sharps container because if it can be lost, it will be lost! And then when that elusive hour is complete and the timer rings, I open the kit to find ... Oh no, I am out of lancets/test strips/alcohol wipes because the six of each that fit into the case were used up yesterday and I was just plain out of spoons at the end of the day and fell exhaustedly asleep (because I am both pregnant AND ADHD so two factors making me exhausted) without engaging in Project Restock. So now I cannot test even if I wanted to. And all this looks like noncompliance. But what it really is, is that there are no ADHD medications approved for use in pregnancy so I am given what would be a challenge even for a medicated brain to an unmedicated brain. There has to be a better way.