• Is it me that finds it weird signing off her own tweets with her name, when her username is literally right there?

    It’s just a shame the (presumably US-based) healthcare system is a clusterfuck, because that bit of expensive paper with a diagnosis on it would likely open up a whole host of avenues for exploration of the condition.

    • In germany its free but you just dont get a place anywhere. Diagnosis maybe after a year, therapy never.

      And you get a blood test to see you dont use Cannabis etc, because 1+1=2

      Both have “a risk for phsychosis or shizophrenia”, so combining will obviously lead to crazy dangers. Thats the state of science they are at.

    • It’s just a shame the (presumably US-based) healthcare system is a clusterfuck,

      Laughs in disembowelled NHS…

      When the government controlling the public health service doesn’t give a shit about the actual public, especially those who it sees as “burdens”, you get more or less the same shit as if it didn’t exist at all.

      I was on a waiting list for 2 years to get an autism diagnosis, and the only way around this is to go private and pay an absolute fortune (this is of course by design - deprive the NHS of its specialists in favour of for profit private clinics).

      Want therapy? Wait at least 8 months. Honest about being suicidal? No need to wait that long, here are some cops to come and take you away…

      My point is the op is correct no matter where you are in the world, and people who insist that self diagnosis isn’t valid seriously need to check their privilege.

  • I’m so tired of this dumb trope. No, your self-diagnosis is not helpful. And yes, you can get diagnosed if you’re poor. There are many ways to do so, you dont have to go through a fancy psychiatrist, and the US public Healthcare system will actually pay for it.

  • Man, even knowing how fucked 'murica is it still keeps surprising you with more fucked stuff. It just never crossed my mind that getting a diagnosis could cost money for someone.

  • it’s even funnier when you might have any given variety of mental disorders.

    Could be ADHD, could be autism, hell might be both or neither! Could be SzPD, could be a variant of that, could be any other generic personality disorder. Hell maybe i’m just shitposting and i’m perfectly normal!

    So now that balloons to the period of about 5 years, 20 tests, and many thousands of dollars, both spent and lost.

    OH and how could i forget. It does precisely, almost nothing. Because disability is super fucked. And any other services that do exist are probably also a nightmare, so what’s even the fucking point of having them!

    •  whoisearth   ( @whoisearth@lemmy.ca ) 
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      Self-diagnosis doesn’t help with relationships IMHO either and I mean that both from a personal and professional perspective.

      Why you might ask?

      YMMV but for me, I am an open book. Having the diagnosis meant I could talk to bosses when trying a new med, or explain to them when struggling. Knowing the diagnosis means you immediately diffuse an aspect of a challenge. For me, that has been immensely valuable.

      Edit - wanted to add a common counterpoint is don’t let work know because you can’t predict people who will use your honesty against you. I will argue assholes are assholes and you can’t live your life at the possibility someone will be a dick. Most people are good people. Trust on that.

      • Unofficial/self diagnosis helped me in my personal relationships.

        I mentioned to my partner that a doctor friend thought I had ADHD, and it really helped them not take some of my most annoying traits personally.

        I get where you’re coming from with needing an official diagnosis for work accommodations, but none of your friends are really going to demand to see a doctor’s note, so why would personal relationships depend on an official diagnosis?

        • I get where you’re coming from with needing an official diagnosis for work accommodations, but none of your friends are really going to demand to see a doctor’s note, so why would personal relationships depend on an official diagnosis?

          The same reasons as from a professional experience. Yes they aren’t going to pull the doctor’s note but neither is work IMHO. What it does is provide more weight behind your words of “hey I’m not just googling this shit. I’m not just an insufferable asshole looking to validate that I am. I’m actually working with a psychologist.”

          Friends, just like coworkers, etc. care less of the diagnosis. They want to know you’re working on you because I’d argue writ large people want to see you succeed. A self-diagnosis can help but it doesn’t give you access to all the tools you may need to succeed so from the outside I would argue that official diagnosis matters. It means you now have someone else on your “team” be it a GP or a psychologist or whatever helping you navigate things.

  • Self-diagnosis is not valid. By definition. Not even a psychiatrist can diagnose themselves. What you’re talking about is either 1) advocating for your own diagnosis or 2) self-treatment.

    Both of these things are valid.

    Advocate for yourself for a diagnosis from a health professional if it will unlock new treatment options. But also just look into how others with similar problems have successfully managed their problems. Consider how you could implement similar things. That’s what’s at the heart of therapy for ADHD anyway.

    But diagnosis itself is only useful as a tool for describing symptoms and informing treatment. If a collection of symptoms speaks to your experience, then the only point in putting a diagnostic label on it is to say “Maybe these things that helped others with similar symptoms will also help you.” But in order to do that effectively, there also needs to be a differential diagnosis to ascertain what it is not. This is why healthcare providers need to be involved in the process. Two different things can look very similar but have very different etiologies and different treatments.

    Social media needs to quit putting so much emphasis on diagnosis and more emphasis on treatment. This post should be removed for medical misinfo, but I hope people at least read the comments to see why this person seems to be such a snakeoil influencer.

      • There’s no such thing as self-diagnosis. That’s my point. What you said about coping mechanisms is exactly what I said in my response: that diagnosis informs treatment, so just try different behavioral applications that help you without worrying about the diagnosis.

        Holy shit, I just realized that you’re one of the mods. This is absolutely embarrassing. I can’t believe you’re spreading this garbage. STOP telling people to diagnose themselves! You’re contributing to genuine harm of the TikTok Diagnosis era.

        • “Diagnosing” yourself is a step along the way to finding behavioural applications that help you. I would never have even begun to start pursuing half the things that have helped me if I didn’t see a bunch of people sharing their experience as autistic and go “oh shit, might I be autistic?”.

          What you are referring to as “telling people to diagnose themselves” is actually just encouraging people to look inward and outward, find common themes between themselves and others, and use those findings to inform what they can do to help themselves and those around them.

          If, in fact, you don’t take any issue with that and its instead just the word “diagnosis” that you take issue with, then I have no right to stop you from being that pedantic but there are better hills to die on.

          • actually just encouraging people to look inward and outward, find common themes between themselves and others, and use those findings to inform what they can do to help themselves and those around them.

            That’s actually what I am saying you do. Why would you call that “diagnosis”? Why not call it “pizza-stomping”? Why not call it winning a nobel prize? Words mean something. The fact that so many people cannot understand why this is frustrating is exactly why it is frustrating. I actually like the nobel prize comparison. That’s not too far off from what’s going on here lol.

            What it leads to is communities of people who increasingly have little relation to people who are actually diagnosed with the condition. “hey i like pizza do i have adhd” “yeah man totally! i have adhd and i love pizza” “yeah it’s totally a major symptom” and then when someone comes along saying “uhh that’s not actually diagnostic of adhd” they get told to fuck off

            these words mean something. these conditions mean something. the treatments mean something. we have boards and licenses and ethics surrounding all of this. if you want to go wild wild west at it, im sure you’ll have a lot of fun and make great friends along the way, but all of this contributes to the undermining of our society’s understanding of mental health

            • So to be clear you take issue with the text in the quoted paragraph? Or is the act of doing what’s in the quoted paragraph cool but calling it diagnosis isn’t?

              If the former, what do you propose people should do who don’t have the means to pursue a formal diagnosis, or are on a waiting list and suffering in the interim?

              • A couple things are wrong with the image. To be clear, the image doesn’t actually describe an act of doing anything. The image describes a barrier to diagnosis. It’s a real problem and one worth discussing - but I’m not sure if the conclusion should be “lol just do it yourself.” The image also says you’re just saying someone to “say what you’ve already known” which is a blatant attempt to flatter the reader’s intellect and skips over the most important part of diagnosis, the DDX. Which leads to the biggest issue, the implied conclusion, represented in this post’s title: “Self-diagnosis is valid”.

                As for what to do: I’m just saying that you can make behavioral changes without having to name your behavioral patterns. Or name them whatever you want, call it Fred. For ADHD behavioral interventions alone wont be as effective as it would if combined with medication, but if there’s no other option then by all means. See what others have done to manage ADHD and try it out for yourselves. That doesn’t necessarily mean you have ADHD - but the name doesn’t matter! If you’re forgetting appointments, keeping an appointment book is just a generally good practice. Keeping a schedule, adjusting how your space is organized to cue your attention instead of relying on executive function, and utilizing post-it notes to stay on track - these are all good practices! And so on. You don’t need a diagnosis to do this. Why must we insist on “self-diagnosing”?

                I just want people to shift from this horoscope-esque idea of “diagnosis” and focus more on “treatment”. I think a lot of the emphasis on the name and not the action comes down to a desire to fit in and finding liberation in a lack of agency. Like if we look at a false dichotomy: Would you rather be officially labeled ADHD and not have to work on yourself at all, or would you not get the label but be in charge of making the changes you want in your life? Both sound pretty scary, but the latter sounds far more difficult.

                Thanks for the thoughtful response!

                • I don’t think you understood my reply (or you chose to ignore my question) but I got the answer regardless. I don’t agree with you but the way you’ve approached the conversation here is much less callous than it was initially so I’m happy to accept that we disagree and move on. Have a good one.

  • Are people having that many hurdles for official diagnosis? Genuinely asking. Mine was with my primary care doc, $100 out of pocket for the visit, and whatever the meds cost. There was one questionnaire and total took about 30min from start of visit to prescription. That said, first meds aren’t helping at all so I’ll need to go back and see what other options there are, if any.

    • I live in a country with socialised healthcare.

      I am at the point that I am looking into diagnosis mainly to be able to get meds because just living is hard. I remember being diagnosed as kid, but I might have a mixed up memory with my brother getting diagnosed and the IQ assessment I had.

      I walked into my GP, who is usually very compassionate and even understanding of mental health things telling them that, speaking about what I struggle with and they go „it is a trend diagnosis too and I personally know a man that says he doesn’t feel a difference with meds“ and give me a referral for a neuropsychologist. No expedited, no like guaranteed thing (there are a kind of slots for that). Tbf they named two good options they can recommend even if they aren’t allowed to show bias. My first „checking if we can help you“ date is on the 8th of August, and I filled their entry questionnaire over two weeks ago. Mind that is a first date, nothing in the way of diagnosis and they might say they can’t help me.

      The only other option is to either pay out of pocket for it (there are loads of private only doctors for it, in fact I did accounting for one of them), which I don’t want for two reasons: not having money laying around and not wanting to just walk out with a predetermined diagnosis. I am pretty sure I have ADHD, but autism plays a role as does childhood trauma and other things. So just treating the ADHD part could be detrimental. Or go call some helpline/emergency line and tell them I am suicidal and getting institutionalised. Judging by the treatment my childhood best friend got for that, I‘ld rather not.

      I am female and females present differently, so that plays a role too.

      My brother didn’t get treated btw, because my mother believed the stories about ADHD vanishing with puberty and that not happening when people get meds. He is also seeking diagnosis currently.

    •  yuri   ( @yuri@pawb.social ) 
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      Folks, really seriously genuinely, talk to your regular ass doctor about a diagnosis if you’re looking to get assessed. Mine just gave me the assessment for no charge because I was already there for something else.

      He even said if I wasn’t happy with the results he would write me a referral to whoever and just send it to my insurance like a specialist referral, so they’d at least HELP even if it’s out of network.

    • Possibly state-by-state, practice specific, or insurance company policies.

      My doctor told me that in my state a psychiatrist has to test and diagnose. The testing was covered by my insurance (if you have a referral), but the wait list is a problem.

        • It took me over a year to get a diagnosis from my initial inquiry with my doctor. She gave me a referral (otherwise it would not be covered by insurance), and a list of practices that did ADHD testing (not every psychiatrist does it), and I stumbled on picking a place for a few months. When I picked a place, their wait list was 3 months and I never pursued testing.
          The testing process in my area takes a few hours - my wife’s took 3 on a video chat, and it took about 3 months for them to send their report to her doctor.
          Cut to a year later, my old doctor had retired, and I had a new one. She gave me a new referral for testing, but cautioned me that the wait list for most places was now 6 months. Checking around with other folks in my area confirmed this. But while at that appointment, she recommended an online company, who - after a few weeks of weighing options, I did pursue, and tested/evaluated me (no video chat, just an online survey - about half was written responses - that took about 4 hours to complete), and got results back in a week. It was $180, and may have been eligible for a reimbursement from insurance, but I have ADHD, so I never bothered.

          And like - I guess I appreciate it. It does seem like whoever made those policies made them so that the diagnosis won’t be given lightly, but it creates issues. I sorta feel that I cheated, but my test was actually reviewed by a psychiatrist, and when I told friends of my diagnosis, the most common response was ‘Duh. You didn’t know?’ - so even though the online approach is sorta ‘cheating,’ I know that it’s definitely a warranted diagnosis in my case.

          • Yeah, that’s terrible. I do agree there needs to be some checks and my doc might be an annomaly in regards to dishing out pills for everything. But while the course so far hasn’t helped me, I’m grateful I don’t have to go through so much just to start. I’m sorry you’ve had to deal with that.

    • That’s nice and you’re very lucky. My PCP told me to schedule an appt with their drugs and mental health department (3 month minimum wait) and that he’d not renew the prescription I’d come to him with.

      Then my next Dr was telehealth and kept warning me I needed to see her in person, but never had an appointment open.

      Then my next Dr was 45 minutes late to every appointment.

      Then my next Dr tried to get me to do IT troubleshooting on my end when he hadn’t joined the fucking Zoom call.

    • a lot of stuff about childhood experiences. it’s helpful to have someone present who knew you as a child, but failing that, you can talk to them beforehand I suppose. I imagine this sounds like a headache, so don’t worry about calling mom if it sounds stressful or confrontational. id say the ideal is a teacher who knew you well but doesn’t have stakes in the diagnostic label like a parent might. maybe a sibling.

      • Hi my parents took me to a psychiatric but did not say anything about adhd. I did not know what the process was, so I didn’t ask them for that diagnosis. They did give me anti depressants but I stopped going after 3 sessions cause i didn’t feel like it was going anywhere. Do you think i should go back and ask for a diagnosis? I also want to add that i live in a country where mental illness is still not real. So im not surprised the doctor was not communicating with me openly

        • that sounds hard. i cant give you medical advice - you know yourself better than me anyway. one thing i can comment on is that changes usually take a combination of medication and behavioral changes (aka therapy). so it’s not surprising that things didn’t improve after 3 sessions. it takes a lot of effort!

  •  Monument   ( @Monument@lemmy.sdf.org ) 
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    Man. I hate to shill, but…

    I faced many of those same issues, and after a year and a half of failing to set up testing, my doctor told me to go to adhdonline.com - they offer online testing for $180, and give you results back in like a week. She’d already given me an ADHD testing referral, and she suggested that my insurer would probably reimburse me for the cost, but I have ADHD, so I never bothered with it.

    It took me about 4 hours to do the test (but I did it while I was sitting through a day-long virtual meeting where I had to be present, but not ‘present’. So like, it probably won’t take focused people that long.)

    And - yeah. Morally, it sucks. It’s feeding into the commodification of someone’s job and is morally kind of like using Uber or AirBNB. It’s convenient and maybe cheaper. Maybe it upsets a system that could use a little upsetting, but will likely upset it too much and have unforeseen impacts.
    But it worked for me.

    • The problem with online services like that is many of them dont properly test people. So when they inevitably get shut down suddenly you don’t have a reliable source of medication and you have to go through the whole process again just to prove it. Like with what happened to Done recently.

      • That’s completely fair. I was unfamiliar with Done until I searched for them just a few moments ago.

        The service I used offers diagnosis for a one-time fee, and does not dabble with prescriptions at all. The diagnosis came from a practicing psychiatrist that is licensed in my state. Those factors, plus the doctor’s recommendation are what made me comfortable enough to go with it, but I normally don’t love going with online options for stuff like this. I just was tired of the runaround.

        The diagnosis - which did not include treatment recommendations - was transmitted to my GP from the psych. And my GP worked with me on treatment options.
        I assume if the website got shut down, it would be inconsequential to my diagnosis unless the psychiatrist was found to have fraudulently issued diagnosis’. (Which is always a possibility.)

        But that is a very good cautionary tale. Done didn’t just say they would diagnose ADHD in 30 minutes or less, but they utilized a subscription model and issued Adderall on an auto-renewing basis.
        That whole thing seems pretty sketchy to me. It appears they were trying to tie your health care to their subscription model. They can go kick rocks.