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.

  • cheers_queers@lemm.ee
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    1 hour 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.

  • OmgItBurns@discuss.online
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    34 minutes ago

    Healthcare shouldn’t be political currency. Healthcare care is an inherently political issue, as each government has to determine the best strategy for them, but like many things in the US politicians see it as just another talking point and something that actually impacts people. This leads to policy being made by people who aren’t knowledgeable about healthcare for people who have strong about healthcare but often aren’t impacted by these policies and don’t have a strong understanding of the topic.

    While it would still be a horrible thing to have happen, I’m starting to think that having a bunch of LLMs run/control the government wouldn’t necessarily be worse than what we have now (at least in the US).

  • bestboyfriendintheworld@sh.itjust.works
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    3 hours 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.

  • Shou@lemmy.world
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    9 hours ago

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

    • renegadespork@lemmy.jelliefrontier.netOP
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      4 hours ago

      Sorry you got downvoted so much, because you’re not 100% wrong. Meditation can actually help with some ADHD symptoms, however

      1. Meditation can be especially difficult for those with ADHD, because it requires doing the exact thing their brain has trouble doing. If you are able to overcome that hurdle, it can be very helpful—exercising a part of your brain that is underdeveloped. But “just meditate” is useless advice for many people.
      2. This comes across as dismissive to the original post, which is about healthcare systems not just lacking accommodation, but full of extra challenges for the most vulnerable. There is much more to ADHD treatment than medication. For example, many people, especially those who went undiagnosed, have years of trauma to unravel, and therapy comes with all these same challenges.
      • patchrobe@lemm.ee
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        1 hour ago

        I have ADHD. I was diagnosed 32 years ago. In all that time, nothing has helped me but meditation. Of course it’s difficult. That’s not an excuse to not help yourself and treat the symptoms instead of the disease. People are so quick to accept a diagnosis and believe there is something wrong with them that can’t be fixed and use that perspective as a basis to over medicate themselves. It’s completely unnecessary. Regular meditation physically restructures the brain and can repair the abnormalities that cause ADHD. I know this for a fact. I guarantee not a single person downvoting me has tried meditation in any serious capacity, or done any research on its effectiveness. Imagine if people actually put effort into helping themselves instead of doping themselves with amphetamines!

        • OmgItBurns@discuss.online
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          47 minutes ago

          So you’re partially right, what you say about meditation helping and restructuring the brain is true and it can help. However, it isn’t an end all be all cure for everyone.

          When talking about ADHD, I usually make sure we agree on the definition. Here when I reference ADHD I’m not just talking about the symptoms (inattentiveness, hyperactivity, executive functioning, impuls control, etc), I also mean that these symptoms exist in a person in such a way that it makes their life significantly harder. So, things like struggling or being unable to hold down a job, maintain friendships, and/or live independently.

          ADHD does present differently in different people (often broadly categorized into Predominantly Inattentive Type, Predominantly Hyperactive-Impulsive Type, and Combined Type) as well as affecting people with different intensities. This, to the best of my understanding, also means that different strategies for coping with ADHD have differing levels of effectiveness. While some may benefit immensely from meditation, others will need to make other lifestyle changes or will absolutely need medication to handle their symptoms. Usually a combination of different techniques are required to be able to effectively function with ADHD. What techniques work may change over time as well, as our bodies change.

          The reason why stimulants or other medications prescribed so often is that they are consistently and broadly effective with helping people manage their ADHD symptoms. It’s best to treat meds as a starting point, something that can keep you going while you determine if non-medication base solutions work for you and start to implement them in your life (if they exist, for some they don’t). Unfortunately, many people don’t have access to proper therapy to get that far. They might be able to get a diagnosis and prescription, but don’t have the ability to continue to get the help they need in further exploring solutions.

          While I’m glad meditation works for you, it is a wonderful tool, ADHD (and mental health in general) is complex and cannot be ‘fixed’ for everyone in a reliable, repeatable way.

    • melpomenesclevage@lemmy.dbzer0.com
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      4 hours ago

      yeah and getting it is hell. either you go for the pharma version, and there are so many hoops to jump through that you basically can’t if you have ADHD, or you try to go with the street version, which is really hard to synthesize and you end up wasting a day on ego death if you dose too high.

  • auraithx@lemmy.dbzer0.com
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    12 hours 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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      7 hours 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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        5 hours 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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          3 hours 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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            2 hours 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.

            • OmgItBurns@discuss.online
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              44 minutes ago

              How did you manage that? I’ve been worried about moving out of state for this reason (not that I have immediate plans, but I’ve thought about it).

    • atrielienz@lemmy.world
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      6 hours 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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      7 hours 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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        5 hours 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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            1 hour 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.

  • Suck_on_my_Presence@lemmy.world
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    15 hours 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.

  • RoyaltyInTraining@lemmy.world
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    21 hours ago

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

  • Infynis@midwest.social
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    20 hours 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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      3 hours 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.

  • tehmics@lemmy.world
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    21 hours 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.

  • xmunk@sh.itjust.works
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    21 hours 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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      7 hours 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.

  • peteyestee@feddit.org
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    16 hours 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.