Disclaimer: I’m referring the the US medical system, but I imagine people in other countries may encounter similar things.

I cannot be the only one who has had this experience, but all my dealings with the medical industry feel like they were refined by a group of psychologists to exploit the weaknesses of those with ADHD.

The volume of calls, appointments, and paperwork I had to full out to get a diagnosis and prescription for treatment is completely unreasonable to expect someone with poor working memory and attention issues to navigate.

Then, to stay on medication, you need to schedule and make appointments with a psychiatrist every month, for the rest of your life, and if you miss a single one, you will run out of meds (and likely charged a fine), which will make it even harder to remember to make the next one. If you miss too many, that psychiatrist will refuse to see you again and you have to go back to your PCP to get a new referral.

Look, I understand that their time is valuable, but this system couldn’t be designed any other way to be more accommodating to people who clinically forget things?!

It’s like designing a wheelchair ramp that’s actually just stairs that are 3x as steep as the regular stairs. Also, if you fall to the bottom, someone takes your wheelchair until you can climb back up.

  • RoyaltyInTraining@lemmy.world
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    2 months ago

    My anxiety, depression, and executive dysfunction prevent me from talking to a therapist and getting a diagnosis. I am so sick of this…

  • tehmics@lemmy.world
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    2 months ago

    100%

    It took me years to realize I had it, even more years to get a diagnosis (I was told I had “severe ADHD” btw") and even now, I’m out of medication more often than I have any due to logistical and financial barriers.

  • Infynis@midwest.social
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    2 months ago

    It’s designed that way, because it has the same effect on everyone. People with ADHD are just starting with a lower capacity for it. The goal is to get as many people as possible to give up on getting what should be theirs in order to “save money”. It’s the same thing you’ll see in certain software when you try to do something they don’t like, for example, opening a link in an external browser, or contacting an actual support representative. Suddenly, this app is really poorly designed! It’s not a bug, it’s a feature

    • earphone843@sh.itjust.works
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      2 months ago

      No, it’s entirely a DEA thing. They have such a stick up their ass that must doctors and pharmacies are terrified of writing/filling too many controls because the DEA can fuck them in the ass for actually providing the meds people need.

  • xmunk@sh.itjust.works
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    2 months ago

    My biggest fear living in the US was falling off meds and being unable to get back on them. If your life situation allows you should absolutely rely on friends or family for help. You don’t need to do this alone, ADHD is a disability and you’re allowed to need assistance.

    • Whats_your_reasoning@lemmy.world
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      2 months ago

      you should absolutely rely on friends or family for help.

      Aw, I wish. There are two types of people in my family. The first type is people who also have ADHD (unmedicated, at that) and/or autism. The second type is people who believe the first type are jUsT bEiNg LaZy.

      There is no in-between.

  • Suck_on_my_Presence@lemmy.world
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    2 months ago

    As someone with unmedicated ADHD and a severe heart condition, I feel this rant deep, deep in my soul but more for my heart stuff.

    You mean I have to call for follow ups every three months and also remember to fill my multiple medications every month or else I am sent on a death spiral? And you also mean to tell me that I can’t take any of the typical ADHD drugs because it might hurt my heart?

    Win win.

  • bestboyfriendintheworld@sh.itjust.works
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    2 months ago

    Germany here. It’s kind of similar here. The system is rigged against us.

    My strategy is to use medication to enable me to build a support structure and learn techniques that help with dealing with symptoms. E. g. meditation, physical exercises that help mind-body connection, CBT, routines, etc. So that when I’m without meds, I can fall back on skills I acquired and trained.

    What I also do is hoard medication. Ask for a higher dose or more pills, than I actually need. That way I can miss an appointment and still have enough for the next month or so. I even hide pills in different places around my apartment.

    • PotatoesFall@discuss.tchncs.de
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      2 months ago

      Also in Germany, undiagnosed.

      There is an ADHD clinic close to me - They sent me a bunch of forms to fill out. Not form-fillable PDFs. They expected me to go to a print shop, print it, fill it out, scan it, and email it back. About 8 months later I ended up just learning how to write texts into PDFs because I kept forgetting and postponing. Now to wait “up to 24 months” for the first appointment, what a joke.

      • bestboyfriendintheworld@sh.itjust.works
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        2 months ago

        Do it like I did: fail so hard at life that lose your job, lose Bürgergeld welfare, and are in danger of losing your apartment. Have a mental breakdown and go to a psychiatric hospital crisis center.

        Do yourself a favor and buy a used brother laser printer. The toner lasts ages and they support universal PCL printer drivers. I bought one new 16 years ago and never bought new toner for it, only paper. It cost less than 100 € back then. Still prints.

      • AddLemmus@lemmy.ml
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        2 months ago

        There is a private clinic that is more streamlined: GAM Medical. You have to pay out of pocked, but honestly, even without a high paying job, it’s easier to get the money than it is to jump through all those hoops. My insurance (GKV) costs me € 1100 per month, but I still pay a few 100 out of pocket for meeting their psychiatrist once and paying for my meds.

        It’s not perfect, though. They too seem to miss the point that it’s hard for us to keep pushing and prodding for the next step. I wish it were just a series of automatic appointments. It’s slow, you’ll have to keep pushing, mailing, calling them for the next and the next and the next step, but in like 6 months, there’s a good chance you got your diagnosis and your treatment, be it therapy, meds or both.

        I got pretty frustrated with them, but unlike every other option I tried, they delivered - eventually.

        You could, in theory, also use them just to get diagnosed. Then, it would be easier to find a psychiatrist for the prescription, because at that point, that’s a lot of money for very little effort for a doctor. Could even have insurance pay. Extra work, though.

          • AddLemmus@lemmy.ml
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            2 months ago

            Nice! It worked out great in my case, but I had to lower my expectations regarding the timeline and how much I had to keep pushing for the next step. They’ll probably get you evaluated by a psychologist now and take care of the series of appointments, but you probably have to be quite pushy to get the formal diagnostic, either from a licensed psychological psychotherapist or a psychiatrist. Then, push again to get an appointment with the psychiatrist for the prescription. (Or find a local one yourself; it’s good profit for them when you are already diagnosed.) Would seem more efficient to me when the psychiatrist also does the diagnostic.

            Still 100x easier than the “normal” method. It would be a great improvement when they take care of a series of appointments until you hold the prescription in your hands.

  • Ceedoestrees@lemmy.world
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    2 months ago

    Shout out to all my spiritual siblings who skip days to stockpile meds because we live in a nightmare world.

  • cheers_queers@lemm.ee
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    2 months ago

    maybe i got lucky, but my psychiatrist is private practice, and she lets me skip every other month and i just text to remind her to fill my meds. she’s great.

    oh, and offered to see me quarterly because she is encouraging me to find a therapist and i told her my budget is too tight to add another bill.

    …yeah, i think i got lucky.

  • auraithx@lemmy.dbzer0.com
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    2 months ago

    You guys don’t have repeat prescriptions?

    I just order mine on an app when I get a reminder and then pick it up from the chemist a few days later when I get a ping.

    • CreateProblems@corndog.social
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      2 months ago

      Your use of “chemist” makes me think you’re out of the US.

      Most ADHD meds in the US are “controlled substances” and that means our doctors can only prescribe up to three months at a time. After three months we have to have a follow-up appointment, then they can prescribe three more months of meds.

      Plus the federal government decided that too many people were taking medications like Adderall. So their “solution” was to instate a cap on how much Adderall manufacturers can make. Which means there’s now a national shortage of Adderall. And that shortage means folks with ADHD are frequently going without their meds entirely or are forced to call multiple pharmacies in the area to ask who has their meds in stock. (My health insurance through work requires me to use a mail-order pharmacy because it means cost savings for them. But that means I don’t have the luxury of shopping around different stores to see who has my meds in stock - at least, not to fill the prescription through insurance and get the lower price. So if the mail order place is out, then I’m screwed.)

      Our healthcare system is so fucked.

    • atrielienz@lemmy.world
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      2 months ago

      I have to go in every year to get refills on my epi pens and my migraine meds. I have to have a doctor sign off on those and I don’t really know why. I am not on ADHD meds but I imagine that would be the same.

    • joel_feila@lemmy.world
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      2 months ago

      Usa person, i canget auto refills on meds never tried with adhd meds though. The ones that have auro refill have a final refill date and max refill number.

      • ivanafterall ☑️@lemmy.world
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        2 months ago

        Like the person above said, I’ve only ever had them do that three months at a time, but it’s better than monthly, which is how I started.

          • ivanafterall ☑️@lemmy.world
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            2 months ago

            Believe it!

            On December 19, 2007, a DEA regulation came into effect that allows a prescriber to issue multiple prescriptions authorizing an individual patient to receive a total of up to a 90-day supply of a Schedule II controlled substance.2 However, this is allowable only under the following conditions:

            There are some restrictions, but it’s a thing. It looks like it can depend on state. In my case, I believe they did it every month, but I only had to visit the office once every three months, the two after that were just called in/you could fill out a website form if you had any issue. But that likely counted as “three prescriptions,” rather than “a single 90-day prescription,” to your point. The main thing for me was not having to get away from work and into a doctor’s office every single month only for her to say, “Alright! See you next month!” as she charged me more than the insurance allowed to fund her (literal) new Corvette parked out front.

  • socsa@piefed.social
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    2 months ago

    The shit that pisses me off is the 4 week refill time because over the span of several months the refill date and appointment date get out of sync. Just make it so you can’t fill more than three times in 90 days or whatever and it would accomplish the exact same shit but with way more flexibility.

    • CreateProblems@corndog.social
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      2 months ago

      I think state regulations might vary. Where I am, every three months I HAVE to have an appointment to get a refill prescription for my Adderall. But fortunately my psych is still doing virtual appointments, which is a lot less disruptive to my workday.

    • Zorsith
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      2 months ago

      I’ve heard it makes reliably getting meds a lot easier if they arent stimulants, so maybe youve got that going for you? 😃

        • Zorsith
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          2 months ago

          I meant shortages, i hear its a nightmare (at least in the US). I’ve got a little over a month to go for an appointment for an initial evaluation 😞

          • UnpledgedCatnapTipper
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            2 months ago

            It’s hit or miss. The instant release Adderall has been more reliably available than the extended release version, but they’re both often delayed by a couple of days. The longest delay for me so far was like 2 weeks for the extended release. I’ve been taking it for almost a year now.

  • WxFisch@lemmy.world
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    2 months ago

    This is one of the benefits of being on non-stimulant meds, the hoops to jump through are way less (I still had to fight insurance for a prior auth, which took nearly a month). I use an online Psychiatrist (Talkiatry) and have been really happy with my doctor. I also only need to see him as often as we think is medically necessary since atamoxetine can be refilled. It’s been shown in trials to be as effective as methylphenidate and works well for me so far.

    The diagnostic piece though is indeed hard, but I can sort of understand that. It’s a pathway to drugs with a high probability of abuse, and no sure fire way to diagnose. So from a liability and care viewpoint I get why psychologists do due diligence in evaluating people (especially adults) for ADHD. It still sucks if you need help, but in theory you only have to deal with that process once to get a diagnosis. Also, as many people have pointed out, many PCPs are willing to fill scripts for controlled substances if needed, especially once you are on a stable dose that you know works. Like many things, the start up is the hardest and it gets easier once you hit steady state.

  • peteyestee@feddit.org
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    2 months ago

    I’ve never had a doctor or therapist take me serious. If I had access to the drugs I could self medicated diagnose better.