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BOOK STUFF | The Effects of Systems (Patreon)

Published:
2023-04-28 18:59:05
Imported:
2023-05

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!)

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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

Anonymous

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.

Anonymous

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.

Anonymous

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.

Anonymous

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”.

Anonymous

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.

Anonymous

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.

Anonymous

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.