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 days ago

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

  • bestboyfriendintheworld@sh.itjust.works
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    1 day 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.

  • Suck_on_my_Presence@lemmy.world
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    2 days 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.

  • tehmics@lemmy.world
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    2 days 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.

  • auraithx@lemmy.dbzer0.com
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    1 day 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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      1 day 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.

      • Maalus@lemmy.world
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        1 day ago

        Adhd meds here are controlled substances too. It makes it so the prescription lasts only a month. But how many packs of meds you have on this prescription, is only set by your doctor. So I get 4 months refills and have to buy it within one month.

        And yeah, med shortage over here is an issue too.

        • earphone843@sh.itjust.works
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          1 day ago

          Yeah, the DEA wouldn’t allow that. Where I’m at in the US you can only get one month at a time, and most people have to go to the doctors office in person to pick up a physical prescription.

          You only have a 3-4 day window before your pills run out to do this, too, so if your pharmacy is out, you’re fucked because most pharmacies won’t just fill a control if you don’t have other prescriptions with them (if they’re accepting new controls at all). All because they’re afraid of the DEA.

          I’ve often day dreamed about starting a class action lawsuit against the DEA for discriminating against the disabled.

          • immutable@lemm.ee
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            1 day ago

            Anyone that might be thinking this is an exaggeration, it is not.

            My wife has adhd and takes vyvanse for it, a strictly controlled substance. I have to be extremely vigilant about making sure her prescription gets to the pharmacy and that the pharmacy fills it correctly.

            We recently moved across country. Here’s a fun puzzle to work on.

            1. You can not get more than a 30 day supply of the drug
            2. Due to lack of providers, you can not get an in state prescription for more than 30 days
            3. while it is perfectly legal to fill the out of state prescription, every large pharmacy that can get vyvanse has a corporate policy against filling out of state prescriptions for it
            4. smaller pharmacies are willing to fill the prescription, but can’t stock the medicine.

            The amount of times I had to explain this to people and just exasperatedly go “so should I just prepare my wife to go through withdrawal of this medication she has been prescribed and taking for nearly a half a decade? Is that ok with you, is that an ok patient outcome? Is that what you’d let happen to your wife”

            Luckily shes married to an angry, persistent, yet very polite man who will shame the shit out of people until he gets it fixed. But I have no idea how she was supposed to navigate this alone, while facing the terror of withdrawal.

    • atrielienz@lemmy.world
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      1 day 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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      1 day 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.

  • Infynis@midwest.social
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    2 days 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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      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.

  • Shou@lemmy.world
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    1 day ago

    Shoutout to ADHDcentral. They tried to make the process as clear and accessible as possible. With automated reminders.

  • xmunk@sh.itjust.works
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    2 days 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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      1 day 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.

  • cheers_queers@lemm.ee
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    23 hours 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.

  • cabinet_sanchez@midwest.social
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    2 days ago

    I’ve never seen a psychiatrist - I was diagnosed by a psychologist and prescribed by my general practitioner doctor. My doctor doesn’t make me come into the office regularly, I can generally just message him for a refill. I realize I am extremely lucky (not that lucky - I can’t seem to tolerate stimulants), but I encourage people to try a different route.

    • CreateProblems@corndog.social
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      1 day 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@lemmy.blahaj.zone
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      2 days 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@lemmy.blahaj.zone
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          2 days 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@lemmy.blahaj.zone
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            1 day 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.

  • peteyestee@feddit.org
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    2 days 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.

  • vonbaronhans@midwest.social
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    2 days ago

    I’m extremely happy with the process I’ve had, but I understand it’s very likely not representative of the rest of us here.

    By and large, you’re right though. My wife has gone through similar struggles and hasn’t been medicated for over a year because of it.