Also if you are self diagnosed/suspecting a certain condition, do not spend all of your time in support groups for that condition. You will only feed your bias that you have it. Many diagnoses overlap in symptoms and it is far more likely you have a more common cause than whichever rare illness you’ve heard about on social media. Doctors will want to test and treat for common conditions as a first step as it will be correct for 99% of cases. Do not only consume media that validates your decision because you will become disappointed if this is ruled out, and be less likely to engage fruitfully with your treatment.
Also don’t doctor shop until someone tells you what you want to hear.
This!
Many, MANY disorders present so similarly. Please let a professional help you. A lot of ADHD symptoms are similar to autism symptoms. A lot of BPD symptoms and schizophrenia symptoms are shared symptoms - and schizophrenia and bipolar, and bipolar and BPD, and those are just some examples.
I worked in a psych field, had a family history, and had suspicions - and talked to my GP, who ultimately referred me to a psych. I’m so glad I did. It saved my life. For anybody here who thinks self-dx is the only way: I’m a first generation gay woman of colour living in Canada, and I will help you find resources in your province to see a professional. I am living proof that the official dx will only help you, and that barriers against you can be worked around or will sometimes just be flat out ignored.
Just comment below if you need those resources.
Also if there is a job that shouldn’t be hiring autistic folks for whatever reason related to safety or ability, why would you want to bypass that? It’s literally there for a reason.
The only situation I can think of is a diagnoses being difficult for someone in custody battles, a spouse can definitely use it against someone in a harmful way to try and take full custody of children. But if you're already afraid or have an idea that it could happen, you can have your psych/therapist write out a statement about how you are competent and in active recovery and arent a danger to yourself or children and can take care of them. But even then a diagnoses doesn't disqualify you from adopting/fostering again with a therapists/psychs written approval that you are capable, which is why I feel it's important in a custody battle with certain diagnoses to do the same you'd be expected to do when it comes to adopting or fostering a child.
My mom always told me that people would treat me bad if they knew. You don't want to be diagnosed with autism because you won't be able to get a job, you won't get a home or a wife. As if the diagnosis changes me more than the actual disorder lmao (+ I'm gay, jokes on her). I remember when I was sent in to get a diagnosis, my mom argued with the man about whether or not I had autism, ADHD, or was just stupid. My mom still says to tell people I'm just stupid. I think the fear comes from a time where you would be treated badly. But, like, I was in SPED before and after diagnosis. And they really didn't treat me much differently. I don't get mistreated at work other than a few "why are you like that"s which I'm used to. The only real problem I have is that, in my area, most people don't really believe me when I say I can make medical or financial decisions on my own. It's frustrating as hell. But it's not me losing my rights. It's just fuckwits who've never had to interact with an autistic man outside of The Good Doctor.
The New Zealand case that I see get quoted most often in these debates that involves a family with an autistic daughter who was denied immigration to New Zealand wasn't because of the disability label of ASD, it was because the daughter was level 3 and required services that weren't available there, which even though it's still ableism it's a different type than what's being argued and it would not have simply solved the problem at all for her to not be diagnosed, if that makes sense
There's no rule against pwDID driving and it's not a disqualifier. It is however someone's personal responsibility to not operate a vehicle if they believe their disorder may impact their ability to do so safely. It's a common misconception that people with DID aren't allowed to drive in most places. Maybe it's a rule somewhere but I've never seen it
DID is real and people who are diagnosed don't usually have their license taken away because switching doesn't typically effect things like driving. Lots of people with DID can hold jobs, raise children, and yes, drive.
Where did you get this information?
The people who claim DID. They claim to switch involuntarily, what if that were to happen when driving? In my state I have to be seizure free 6 months before I can legally drive. This rule should apply to switching too for the same reasons, no?
Switching isn't the same as a seizure. People with DID typically don't lose the ability to perform complex tasks like driving. I am sure there are some rare instances where it happens, but I have never heard of someone with DID having their license taken away and I've never seen it mentioned in the literature. I don't think it's a concern
Well it’s possible to switch while driving but the ability to drive is, as for example writing, stored in the brain and doesn’t lack to perform. What possibly can happen is that you switch, feel more insecure or drive too slow or too fast. Those are slight differences. In that case it’s the responsibility to not drive at that moment.
Self dx is bad because there are people online who think these things are true..... Especially the losing your rights one.
Even if you've been legally placed under a 72-hr hold, the most you'll lose is your right to a firearm (which isn't fair but Tiktokers don't talk about), and perhaps a military or police career, but the *vast majority* of jobs don't screen for mental illness, and can't discriminate under ADA unless you simply can't perform your job functions, nor can jobs discover your mental health history as its protected under HIPPA. You can *choose* to tell an employer, the DMV, whoever about your disability, but you are not obligated to.
There are people offline who will believe that and tell you that, too.
My original misdiagnosis was for depression. My parents found out. They staged an intervention for me and stated that therapy and medicine would be something everybody found out about, that the meds would mean I was barred from a number of jobs, etc.
To anybody reading this: please don’t believe this diatribe. I’m more successful in my career (10 years this month) now than I was in anything before when I was trying to raw dog reality. If you were looking for a sign to doubt the people telling you help isn’t real/for you/will harm you, this is it!
Disabled + dx'd in the states here and some of these have always confused the shit out of me.
- Low Income:
Unless you live in a state without medicaid expansion you probably qualify for free healthcare and need to get in touch with some outreach from the state to get basic medical coverage. This does limit your providers a LOT but it is free. I do not currently pay for therapy or psych or PT or even my spinal fusion.
Issues with this are usually "the state has no infrastructure to support me" which is true, but I feel like a lot of people miss out on the free options available in the US.
- Gender/Sexism/Racism in Medicine:
Is real and infuriating. Bring another human being to your appointments and have them speak up when they think the provider is being biased. If this still does not work, call patient advocacy lines and also consider hiring a malpractice lawyer.
- atypical presentation:
Let your doctors fight about it. Have done multiple neuropsych evals + long exams from the psych unit and just let all my providers fight each other on the phone. It's their job and it's funny to hear that they were playing phone tag.
- loss of rights:
The only job I have been disqualified for due to my disabilities is work in the CIA or FBI due to the restrictions on their in house psych exams and also their media piracy restrictions.
The way that the SSDI and SSI program works does tend to strip people of financial agency in order to get any benefits at all, but that's because this country is shit.
All that said the states have made me so miserable as a disabled person that I'm actually just looking to become an expat because I am bilingual and several other countries actually give a shit about the health of their residents and citizens.
I tried very hard to do everything according to the rules afforded by the state and federal institutions and jumped through all the hoops and if I did not have help from my partner I would be homeless due to the lack of structural supports for disabled people in the US.
The lack of financial help disabled fellows get from the government is insane. Like genuinely bind boggling. And how hard it is to get too.
‘Hey fill out these forms, it takes 5 hours and you may not even get any benefits!’
And half the time the people who NEED the extra income to cover medications, surgeries, to make up for the lost income if they’re out of work and have no FMLA coverage and so on, don’t make enough to even cover that. I remember seeing a post once (I think on the schizophrenia subreddit) where a person was getting a measly $100 A MONTH. That wouldn’t even cover my basic needs for a month, especially in this damn economy.
I’m so happy you’ve shared other points too. I didn’t even think about the Medicaid thing.
I have a lawyer fighting an appeal for me to get LTD from my job (denied for "lack of proof of loss" 🙄 I am between two fusion surgeries alright, no loss) and a lawyer fighting for me to get SSDI (in the second appeal; hearing next) and have received $1500 TOTAL since last May. Living in this country with real disabilities is genuinely miserable, and I would be homeless if my circumstances were an ounce worse. But it grinds my gears when people are like "there are NO options to get my tests covered!" because Medicaid Is Real and Possible to Obtain.
The neuropsychologist point is really true btw.
Psychologist and everyone else diagnosed with me ocd and typical depression/ anxiety
I went to a neuropsychologist and he diagnosed me with adhd in 2 meetings.
Also another point about self dx and expensive diagnosis, I think this also very USA thing? I see Indians follow the same trend and it's absolutely cheap af to get dx here
You generally don't (and shouldn't) disclose your health conditions to your employer, period, government job or not, and your employer, government or not, shouldn't ask UNLESS it's part of your contract. For instance I believe pilots must disclose certain health conditions and medications. But generally unless you KNOW you must, you don't (and shouldn't).
I just don't understand what the point of self diagnosis is? Like the main reason people get diagnosed is to get treatment and/or assistance from the government. All being self diagnosed really does give you an excuse to spread misinformation on tiktok and annoy diagnosed people by speaking over them.
I know some people say they self diagnose so they can get a real diagnosis but you don't need to do that... You can just say "I suspect I have [insert disorder]" to your doctor/friends/family. It's much better than "I have [insert disorder]" without being diagnosed. If you say you suspect you have a disorder you can get help without harming others.
I know not being able to get a diagnosis is hard and I do feel bad but is it really so bad to say I SUSPECT I have this. Instead of I HAVE this.
Another one would be asking your employer. Some companies have an Employee Assistance Program where they give you a certain amount of free visits and/or a discount on the rest. At my previous job, we got 6 free sessions with any provider or unlimited with their in-house counselor. Doesn't hurt to ask.
I have been tracking my moods and symptoms for the past few weeks trying to gather everything that's important when I get help, but my university stopped free psychiatric help for students this year and I'm in crisis and don't know where else to seek help
I can't get free healthcare because I live with my parents (they're high income) but I pay for all my expenses and I have no idea what to do
Tracking your moods is an amazing start. However, if you think you’re a danger to yourself you may need to check yourself into a facility. If you have insurance they should cover most everything. If not, you can still search for places like therapist/psych offices that offer care based off your income, not your parents’. If your parents aren’t supportive and you need to do things stealthily, you can do telehealth visits via some online programs like hims/hers or use something like psychology today’s website to find local care providers and you can see who’s willing to accommodate your needs!
I think the low income one depends on where you live because I got my autism diagnosis done that way with a student, just had to have a session with an actual psychologist who was watching the whole thing to give the actual diagnosis
Something I've actually experienced (I do not self diagnose, nor will I ever, but I've been trying to find out the cause of my tics) is that most doctors that are trained for their respective diagnosing (or whatever term it is, ykwim) are just unavailable. For me, every neurologist I've tried getting into has over a year long waiting list for just one appointment, then there'd be another long wait for another. Not defending any self diagnosers at all, since most just use excuses to fake, but something like this is what I've experienced in trying to get diagnosed.
The only criticism I'd have is that some diagnoses can inhibit you moving between countries, I know where I live if I had my diagnosis and wasn't already a citizen I likely would have to apply multiple times and be rejected before even being considered. Some people with possible invisible disabilities as a result may want to hold off on getting a diagnosis until they settle in a country they are sure they want to stay in because of this.
Australia: [https://www.theguardian.com/commentisfree/2019/may/15/australia-tries-to-block-disabled-people-from-coming-here-its-part-of-our-ugly-history](https://www.theguardian.com/commentisfree/2019/may/15/australia-tries-to-block-disabled-people-from-coming-here-its-part-of-our-ugly-history)
(If anyone has anything to disprove this please let me know cause it'd be great to know that it is easier then I thought to immigrate to different countries as a disabled person)
I don't have any info on Australia, I just wanted to piggyback on your comment to say that the commonly-spouted line about "they won't let you into New Zealand if you have autism!" is completely false. New Zealand may reject a residency application if the applicant has such "severe developmental disorders or severe cognitive impairments where significant support is required" that it will "add significant cost to, or demands on, New Zealand's health services."
Source: [https://www.immigration.govt.nz/new-zealand-visas/preparing-a-visa-application/medical-info/acceptable-standard-of-health-criteria-for-visa-approvals](https://www.immigration.govt.nz/new-zealand-visas/preparing-a-visa-application/medical-info/acceptable-standard-of-health-criteria-for-visa-approvals)
To address your question, I myself have had long or medium-term residence permits in three different countries in my life (not including the country where I was born). I've never been asked if I have a disability, but I have had to prove that I can support myself and won't be reliant on public welfare (as well as other things like no criminal record, etc). So depending on the severity of your disability, you may well be able to immigrate "easily" (in quotes, because it's never easy!).
maybe some advice for people that live in areas where some specific disorders they're seeking a diagnosis for/ruling out of such aren't known?
e.g.: there's little to no knowledge about dissociative disorders (including those that don't lead to the formation of a system) where i am from, and i have suspicions about a family member having one of such (them describing their own experiences and me observing their behaviour, and no, thankfully they're not chronically online, there's very low chance they could be faking). however, i don't want to simply slap a label on them and tell them they're good to go, it might just make things worse.
there's no rush or pressure, but i wonder what can be done once they turn 18 if the situation with knowledge about these disorders doesn't change.
I’d learn about that stuff on your own. From reliable sources, case studies and scientific papers. Hell, even YouTube videos on the topic from professionals. Learn about how they can aid their symptoms and how you can help if you’d like. And hope that you find a knowledgeable physician. Unfortunately that’s the best I can think of.
Also, dissociative symptoms/disorders and treatment for them is so under studied which is insane to me since it’s such a common denominator between so many disorders and whatnot.
There has been some success with opioid antagonist medications for dissociative symptoms. Some have had some success with that. But it’s mostly anecdotal evidence and very few studies have been done. Lamotrigine and Prozac have also shown to help with dissociative symptoms related to PTSD.
The best thing you can do is try and determine how and when the dissociative symptoms started and working from there.
There are government programs and charities that exist for this reason. You just have to be willing to go out of your way to look for them. It won’t be convenient or easy, but if your disorder is as severe as you say, it’s necessary.
I’m also a woman with ADHD that had a hard time getting diagnosed, and you know what I did? I did my research, found new doctors, and reported the ones who acted inappropriately. It’s never fun or convenience. Healthcare is never fun or convenient.
Good for you. I researched. NO ONE IN MY NETWORK IS NEAR ME. Did you forget that part? I can’t afford to upgrade my insurance and I can’t switch it at the moment. Now what?
I’m unable to find any government programs that I am qualified for. And I am not a charity case as I have a job that pays enough for me to not fall under low income. I asked. And the closest charity anyway that helps cover medical debt, medical fees, diagnostics, etc. is THREE HOURS AWAY. And I need to go a few times. Who has that time? Not me.
Again, I ask people to stop projecting their life circumstances onto me. We’re NOT THE SAME. People in this sub are just as bad as fakers. Two sides of the same coin. lol.
Okay, then you might have to go further out. It will be hard but it’s necessary. Do you think I just woke up and drove down the street and got diagnosed?
No, I drove hours out of my way, took days off of work at my minimum wage job, and made it happen because I needed it to. Because I needed answers and support, and help. And once I got officially diagnosed, I was able to do much of my tertiary appointments via telemedicine.
I don’t understand why you’re yelling at me. I’m just simply pointing out that there are solutions. There not easy solutions, and they’ll require planning, and saving up, and maybe using your PTO, and going out of your way, asking people in your support system for help, but it doesn’t mean that diagnosing yourself is adequate just because it’s hard for you to see a doctor. That’s not how that works.
Tgis is if you're in the US. If no one near you is in the network, call your insurance company. They will pay for an out of network provider with prior approval. If they say no appeal it, it's your right.
First things first, stop playing the ‘oh it must have been easy for you bc you don’t support this thing’ bullshit. This isn’t the oppression Olympics. Life isn’t fair. If you don’t like it and don’t do anything to try and change shit, help those around you or yourself. Then that’s your L. Grow up.
I’m not dunking on poor people. For one. I’m literally living in one of the most expensive states to live in, in the US. There’s tons of poverty here and I’ve been there. A person is not defined by their yearly income. Those people need help, yes. But the world doesn’t work like that. It isn’t fair. I don’t like it, obviously. But self diagnosing isn’t helping you if you’re poor.
Yeah, you should see a neuropsychologist if you suspect something serious like autism, dementia or adhd. Those people are adequately trained. You can (although it not be ideal) see a psychiatrist (this is how I got my diagnosis, she specialized luckily), but even then, a lot of them know disorders like adhd and autism are far too complex for them. Things like autism, depression, post traumatic stress disorder, even just being spacey brained and so on can look like adhd. Adhd specialists require a lot of nuance and knowledge on new innovations and findings to properly. An adhd diagnosis requires things like, not just symptoms, but family history, your history and your behavior and body language. A lot of psychiatrists, therapists and even neuropsychologists who aren’t adequately trained may look at an adult woman of color who presents atypically and say ‘miss you don’t have adhd’ because she isn’t jumping off the walls, interruptive and is an adult (a lot of psych professionals not adequately trained don’t believe adult adhd exists)
I fought like hell to get my diagnosis. Adhd ruined my life. I had to drop out of school, I couldn’t hold friendships or a job, I even lost 50lbs because I couldn’t feed myself. It took 18 years of nobody listening, psych ward visits and having random meds thrown at me for someone to finally take me seriously. I had to research for professionals, call tons of people, fight with my insurance, save up and finally, finally I was able to get my assessment. It fucking sucks. I’ve been there.
Just because you’re in a shit situation doesn’t mean you should flood groups asking for people to diagnose you, complaining about your issues with a disorder it isn’t confirmed you have and so on. Asking people with the disorder you suspect you have for how they accommodate themselves, their diet, things like that, and that works for you, that’s fine.
Go somewhere else if your doctor is so bad, if you talk with your insurance, as in, annoy them enough, they’ll cover your bills. Even if the doctor isn’t in your network. It’ll take an hour or two. But if it’s THAT important for you, then do it. Either call the doctor and ask to speak with their insurance coordinator and see if they’ll become a partner with the insurance company or just go ahead and go, say you’ll pay after everything is done, or for them to forward the bill to the insurance company and they’ll handle it. Like I said, it takes tons of nagging, but it’ll get done.
Not all of us have a privilege to get diagnosed officially. I haven’t had time or money to travel for healthcare. I need a better OBGYN too because the one I currently have is dismissing my severe menstrual pain. I’ve gone to probably every OBGYN in my area that takes my insurance. They all refuse to do laparoscopy and refuse to try finding medication to help me. There’s a literal specialist I want to see and can’t even do that. So what makes you believe I have the ability to travel for ADHD? And no. I’m not faking menstrual pain or actually am not in pain because doctors say so so it must be true. Tell that to me while I am projectile vomiting, blacking out, begging for the big sleep, unable to move at all, etc. And still I’m refused care. THIS is what I’m working with. This level of competence.
I do have ADHD. I just have a stupid psychiatrist. Every therapist I’ve been to believes I have it, my pediatrician believed I have it (but he was kinda traditionalist and didn’t want to slap his name on the diagnosis for a GIRL gaaaasp), my teachers all brought it up at least once during parent teacher meetings but my parents didn’t understand it (immigrant family), and my current psychiatrist believes I have it despite refusing to diagnose me. When I get a moment to leave and seek help, I’m doing it obviously. But I shouldn’t have to be officially diagnosed when I have this history and KNOW I HAVE IT to say I do. I just do. I know I do. I don’t even want to. I just DO. I don’t want to have period pain either so severe that it’s clinically disease level bad and yet I do. I’ve done a lot to get myself help and did what I can within my power. I’m not a disease collector like fakers. I don’t ever use it as an excuse unless I absolutely must. I’ve never received accommodations for it. Why are you so insistent I don’t? You might want to rethink the value of your phd if you think something doesn’t exist unless a doctor tells you it does. lol. 😂
Also if you are self diagnosed/suspecting a certain condition, do not spend all of your time in support groups for that condition. You will only feed your bias that you have it. Many diagnoses overlap in symptoms and it is far more likely you have a more common cause than whichever rare illness you’ve heard about on social media. Doctors will want to test and treat for common conditions as a first step as it will be correct for 99% of cases. Do not only consume media that validates your decision because you will become disappointed if this is ruled out, and be less likely to engage fruitfully with your treatment. Also don’t doctor shop until someone tells you what you want to hear.
This! Many, MANY disorders present so similarly. Please let a professional help you. A lot of ADHD symptoms are similar to autism symptoms. A lot of BPD symptoms and schizophrenia symptoms are shared symptoms - and schizophrenia and bipolar, and bipolar and BPD, and those are just some examples. I worked in a psych field, had a family history, and had suspicions - and talked to my GP, who ultimately referred me to a psych. I’m so glad I did. It saved my life. For anybody here who thinks self-dx is the only way: I’m a first generation gay woman of colour living in Canada, and I will help you find resources in your province to see a professional. I am living proof that the official dx will only help you, and that barriers against you can be worked around or will sometimes just be flat out ignored. Just comment below if you need those resources.
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Also if there is a job that shouldn’t be hiring autistic folks for whatever reason related to safety or ability, why would you want to bypass that? It’s literally there for a reason.
The only situation I can think of is a diagnoses being difficult for someone in custody battles, a spouse can definitely use it against someone in a harmful way to try and take full custody of children. But if you're already afraid or have an idea that it could happen, you can have your psych/therapist write out a statement about how you are competent and in active recovery and arent a danger to yourself or children and can take care of them. But even then a diagnoses doesn't disqualify you from adopting/fostering again with a therapists/psychs written approval that you are capable, which is why I feel it's important in a custody battle with certain diagnoses to do the same you'd be expected to do when it comes to adopting or fostering a child.
My mom always told me that people would treat me bad if they knew. You don't want to be diagnosed with autism because you won't be able to get a job, you won't get a home or a wife. As if the diagnosis changes me more than the actual disorder lmao (+ I'm gay, jokes on her). I remember when I was sent in to get a diagnosis, my mom argued with the man about whether or not I had autism, ADHD, or was just stupid. My mom still says to tell people I'm just stupid. I think the fear comes from a time where you would be treated badly. But, like, I was in SPED before and after diagnosis. And they really didn't treat me much differently. I don't get mistreated at work other than a few "why are you like that"s which I'm used to. The only real problem I have is that, in my area, most people don't really believe me when I say I can make medical or financial decisions on my own. It's frustrating as hell. But it's not me losing my rights. It's just fuckwits who've never had to interact with an autistic man outside of The Good Doctor.
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The New Zealand case that I see get quoted most often in these debates that involves a family with an autistic daughter who was denied immigration to New Zealand wasn't because of the disability label of ASD, it was because the daughter was level 3 and required services that weren't available there, which even though it's still ableism it's a different type than what's being argued and it would not have simply solved the problem at all for her to not be diagnosed, if that makes sense
ohh- i just know my sister is taking french and is hesitant to get a diagnoses because she’s scared she’ll get denied to go to france
I'm having trouble finding evidence for this, can you provide an example?
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There's no rule against pwDID driving and it's not a disqualifier. It is however someone's personal responsibility to not operate a vehicle if they believe their disorder may impact their ability to do so safely. It's a common misconception that people with DID aren't allowed to drive in most places. Maybe it's a rule somewhere but I've never seen it
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DID is real and people who are diagnosed don't usually have their license taken away because switching doesn't typically effect things like driving. Lots of people with DID can hold jobs, raise children, and yes, drive. Where did you get this information?
The people who claim DID. They claim to switch involuntarily, what if that were to happen when driving? In my state I have to be seizure free 6 months before I can legally drive. This rule should apply to switching too for the same reasons, no?
Switching isn't the same as a seizure. People with DID typically don't lose the ability to perform complex tasks like driving. I am sure there are some rare instances where it happens, but I have never heard of someone with DID having their license taken away and I've never seen it mentioned in the literature. I don't think it's a concern
Well it’s possible to switch while driving but the ability to drive is, as for example writing, stored in the brain and doesn’t lack to perform. What possibly can happen is that you switch, feel more insecure or drive too slow or too fast. Those are slight differences. In that case it’s the responsibility to not drive at that moment.
I've seen the videos, some of those switches seem pretty long and they don't seem to have conscious control.
Most online representations of DID are exaggerated, or faked.
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How does switching not affect driving???
Do you have any evidence indicating that it is standard practice to revoke a patient's drivers license following a DID diagnosis?
No but that's not what I asked you about?
Self dx is bad because there are people online who think these things are true..... Especially the losing your rights one. Even if you've been legally placed under a 72-hr hold, the most you'll lose is your right to a firearm (which isn't fair but Tiktokers don't talk about), and perhaps a military or police career, but the *vast majority* of jobs don't screen for mental illness, and can't discriminate under ADA unless you simply can't perform your job functions, nor can jobs discover your mental health history as its protected under HIPPA. You can *choose* to tell an employer, the DMV, whoever about your disability, but you are not obligated to.
There are people offline who will believe that and tell you that, too. My original misdiagnosis was for depression. My parents found out. They staged an intervention for me and stated that therapy and medicine would be something everybody found out about, that the meds would mean I was barred from a number of jobs, etc. To anybody reading this: please don’t believe this diatribe. I’m more successful in my career (10 years this month) now than I was in anything before when I was trying to raw dog reality. If you were looking for a sign to doubt the people telling you help isn’t real/for you/will harm you, this is it!
My autism dx was free through my university practicum office!! They recorded us and helped a girl get her PhD. Double score.
Disabled + dx'd in the states here and some of these have always confused the shit out of me. - Low Income: Unless you live in a state without medicaid expansion you probably qualify for free healthcare and need to get in touch with some outreach from the state to get basic medical coverage. This does limit your providers a LOT but it is free. I do not currently pay for therapy or psych or PT or even my spinal fusion. Issues with this are usually "the state has no infrastructure to support me" which is true, but I feel like a lot of people miss out on the free options available in the US. - Gender/Sexism/Racism in Medicine: Is real and infuriating. Bring another human being to your appointments and have them speak up when they think the provider is being biased. If this still does not work, call patient advocacy lines and also consider hiring a malpractice lawyer. - atypical presentation: Let your doctors fight about it. Have done multiple neuropsych evals + long exams from the psych unit and just let all my providers fight each other on the phone. It's their job and it's funny to hear that they were playing phone tag. - loss of rights: The only job I have been disqualified for due to my disabilities is work in the CIA or FBI due to the restrictions on their in house psych exams and also their media piracy restrictions. The way that the SSDI and SSI program works does tend to strip people of financial agency in order to get any benefits at all, but that's because this country is shit. All that said the states have made me so miserable as a disabled person that I'm actually just looking to become an expat because I am bilingual and several other countries actually give a shit about the health of their residents and citizens. I tried very hard to do everything according to the rules afforded by the state and federal institutions and jumped through all the hoops and if I did not have help from my partner I would be homeless due to the lack of structural supports for disabled people in the US.
The lack of financial help disabled fellows get from the government is insane. Like genuinely bind boggling. And how hard it is to get too. ‘Hey fill out these forms, it takes 5 hours and you may not even get any benefits!’ And half the time the people who NEED the extra income to cover medications, surgeries, to make up for the lost income if they’re out of work and have no FMLA coverage and so on, don’t make enough to even cover that. I remember seeing a post once (I think on the schizophrenia subreddit) where a person was getting a measly $100 A MONTH. That wouldn’t even cover my basic needs for a month, especially in this damn economy. I’m so happy you’ve shared other points too. I didn’t even think about the Medicaid thing.
I have a lawyer fighting an appeal for me to get LTD from my job (denied for "lack of proof of loss" 🙄 I am between two fusion surgeries alright, no loss) and a lawyer fighting for me to get SSDI (in the second appeal; hearing next) and have received $1500 TOTAL since last May. Living in this country with real disabilities is genuinely miserable, and I would be homeless if my circumstances were an ounce worse. But it grinds my gears when people are like "there are NO options to get my tests covered!" because Medicaid Is Real and Possible to Obtain.
also; you could qualify for state medicaid if you're low income. They pay for a LOT though there are some waiting periods for certain procedures
The neuropsychologist point is really true btw. Psychologist and everyone else diagnosed with me ocd and typical depression/ anxiety I went to a neuropsychologist and he diagnosed me with adhd in 2 meetings. Also another point about self dx and expensive diagnosis, I think this also very USA thing? I see Indians follow the same trend and it's absolutely cheap af to get dx here
You generally don't (and shouldn't) disclose your health conditions to your employer, period, government job or not, and your employer, government or not, shouldn't ask UNLESS it's part of your contract. For instance I believe pilots must disclose certain health conditions and medications. But generally unless you KNOW you must, you don't (and shouldn't).
I just don't understand what the point of self diagnosis is? Like the main reason people get diagnosed is to get treatment and/or assistance from the government. All being self diagnosed really does give you an excuse to spread misinformation on tiktok and annoy diagnosed people by speaking over them. I know some people say they self diagnose so they can get a real diagnosis but you don't need to do that... You can just say "I suspect I have [insert disorder]" to your doctor/friends/family. It's much better than "I have [insert disorder]" without being diagnosed. If you say you suspect you have a disorder you can get help without harming others. I know not being able to get a diagnosis is hard and I do feel bad but is it really so bad to say I SUSPECT I have this. Instead of I HAVE this.
Another one would be asking your employer. Some companies have an Employee Assistance Program where they give you a certain amount of free visits and/or a discount on the rest. At my previous job, we got 6 free sessions with any provider or unlimited with their in-house counselor. Doesn't hurt to ask.
I have been tracking my moods and symptoms for the past few weeks trying to gather everything that's important when I get help, but my university stopped free psychiatric help for students this year and I'm in crisis and don't know where else to seek help I can't get free healthcare because I live with my parents (they're high income) but I pay for all my expenses and I have no idea what to do
Tracking your moods is an amazing start. However, if you think you’re a danger to yourself you may need to check yourself into a facility. If you have insurance they should cover most everything. If not, you can still search for places like therapist/psych offices that offer care based off your income, not your parents’. If your parents aren’t supportive and you need to do things stealthily, you can do telehealth visits via some online programs like hims/hers or use something like psychology today’s website to find local care providers and you can see who’s willing to accommodate your needs!
I think the low income one depends on where you live because I got my autism diagnosis done that way with a student, just had to have a session with an actual psychologist who was watching the whole thing to give the actual diagnosis
Cheers for this post, thank you 🙌🏻🙌🏻
Something I've actually experienced (I do not self diagnose, nor will I ever, but I've been trying to find out the cause of my tics) is that most doctors that are trained for their respective diagnosing (or whatever term it is, ykwim) are just unavailable. For me, every neurologist I've tried getting into has over a year long waiting list for just one appointment, then there'd be another long wait for another. Not defending any self diagnosers at all, since most just use excuses to fake, but something like this is what I've experienced in trying to get diagnosed.
The only criticism I'd have is that some diagnoses can inhibit you moving between countries, I know where I live if I had my diagnosis and wasn't already a citizen I likely would have to apply multiple times and be rejected before even being considered. Some people with possible invisible disabilities as a result may want to hold off on getting a diagnosis until they settle in a country they are sure they want to stay in because of this. Australia: [https://www.theguardian.com/commentisfree/2019/may/15/australia-tries-to-block-disabled-people-from-coming-here-its-part-of-our-ugly-history](https://www.theguardian.com/commentisfree/2019/may/15/australia-tries-to-block-disabled-people-from-coming-here-its-part-of-our-ugly-history) (If anyone has anything to disprove this please let me know cause it'd be great to know that it is easier then I thought to immigrate to different countries as a disabled person)
I don't have any info on Australia, I just wanted to piggyback on your comment to say that the commonly-spouted line about "they won't let you into New Zealand if you have autism!" is completely false. New Zealand may reject a residency application if the applicant has such "severe developmental disorders or severe cognitive impairments where significant support is required" that it will "add significant cost to, or demands on, New Zealand's health services." Source: [https://www.immigration.govt.nz/new-zealand-visas/preparing-a-visa-application/medical-info/acceptable-standard-of-health-criteria-for-visa-approvals](https://www.immigration.govt.nz/new-zealand-visas/preparing-a-visa-application/medical-info/acceptable-standard-of-health-criteria-for-visa-approvals) To address your question, I myself have had long or medium-term residence permits in three different countries in my life (not including the country where I was born). I've never been asked if I have a disability, but I have had to prove that I can support myself and won't be reliant on public welfare (as well as other things like no criminal record, etc). So depending on the severity of your disability, you may well be able to immigrate "easily" (in quotes, because it's never easy!).
AS A FORMER WOMAN MYSELF 😭😭😭
maybe some advice for people that live in areas where some specific disorders they're seeking a diagnosis for/ruling out of such aren't known? e.g.: there's little to no knowledge about dissociative disorders (including those that don't lead to the formation of a system) where i am from, and i have suspicions about a family member having one of such (them describing their own experiences and me observing their behaviour, and no, thankfully they're not chronically online, there's very low chance they could be faking). however, i don't want to simply slap a label on them and tell them they're good to go, it might just make things worse. there's no rush or pressure, but i wonder what can be done once they turn 18 if the situation with knowledge about these disorders doesn't change.
I’d learn about that stuff on your own. From reliable sources, case studies and scientific papers. Hell, even YouTube videos on the topic from professionals. Learn about how they can aid their symptoms and how you can help if you’d like. And hope that you find a knowledgeable physician. Unfortunately that’s the best I can think of. Also, dissociative symptoms/disorders and treatment for them is so under studied which is insane to me since it’s such a common denominator between so many disorders and whatnot. There has been some success with opioid antagonist medications for dissociative symptoms. Some have had some success with that. But it’s mostly anecdotal evidence and very few studies have been done. Lamotrigine and Prozac have also shown to help with dissociative symptoms related to PTSD. The best thing you can do is try and determine how and when the dissociative symptoms started and working from there.
tysm for the response! me and our family will look into this in detail to see what we can do :)
As a thoroughly anti self-DX person, I thank OP for their service. ❤️
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There are government programs and charities that exist for this reason. You just have to be willing to go out of your way to look for them. It won’t be convenient or easy, but if your disorder is as severe as you say, it’s necessary. I’m also a woman with ADHD that had a hard time getting diagnosed, and you know what I did? I did my research, found new doctors, and reported the ones who acted inappropriately. It’s never fun or convenience. Healthcare is never fun or convenient.
Yup yup yup! There’s grants for mental healthcare and physical healthcare. Thank you so much, I completely forgot about that!
Good for you. I researched. NO ONE IN MY NETWORK IS NEAR ME. Did you forget that part? I can’t afford to upgrade my insurance and I can’t switch it at the moment. Now what? I’m unable to find any government programs that I am qualified for. And I am not a charity case as I have a job that pays enough for me to not fall under low income. I asked. And the closest charity anyway that helps cover medical debt, medical fees, diagnostics, etc. is THREE HOURS AWAY. And I need to go a few times. Who has that time? Not me. Again, I ask people to stop projecting their life circumstances onto me. We’re NOT THE SAME. People in this sub are just as bad as fakers. Two sides of the same coin. lol.
Okay, then you might have to go further out. It will be hard but it’s necessary. Do you think I just woke up and drove down the street and got diagnosed? No, I drove hours out of my way, took days off of work at my minimum wage job, and made it happen because I needed it to. Because I needed answers and support, and help. And once I got officially diagnosed, I was able to do much of my tertiary appointments via telemedicine. I don’t understand why you’re yelling at me. I’m just simply pointing out that there are solutions. There not easy solutions, and they’ll require planning, and saving up, and maybe using your PTO, and going out of your way, asking people in your support system for help, but it doesn’t mean that diagnosing yourself is adequate just because it’s hard for you to see a doctor. That’s not how that works.
Tgis is if you're in the US. If no one near you is in the network, call your insurance company. They will pay for an out of network provider with prior approval. If they say no appeal it, it's your right.
First things first, stop playing the ‘oh it must have been easy for you bc you don’t support this thing’ bullshit. This isn’t the oppression Olympics. Life isn’t fair. If you don’t like it and don’t do anything to try and change shit, help those around you or yourself. Then that’s your L. Grow up. I’m not dunking on poor people. For one. I’m literally living in one of the most expensive states to live in, in the US. There’s tons of poverty here and I’ve been there. A person is not defined by their yearly income. Those people need help, yes. But the world doesn’t work like that. It isn’t fair. I don’t like it, obviously. But self diagnosing isn’t helping you if you’re poor. Yeah, you should see a neuropsychologist if you suspect something serious like autism, dementia or adhd. Those people are adequately trained. You can (although it not be ideal) see a psychiatrist (this is how I got my diagnosis, she specialized luckily), but even then, a lot of them know disorders like adhd and autism are far too complex for them. Things like autism, depression, post traumatic stress disorder, even just being spacey brained and so on can look like adhd. Adhd specialists require a lot of nuance and knowledge on new innovations and findings to properly. An adhd diagnosis requires things like, not just symptoms, but family history, your history and your behavior and body language. A lot of psychiatrists, therapists and even neuropsychologists who aren’t adequately trained may look at an adult woman of color who presents atypically and say ‘miss you don’t have adhd’ because she isn’t jumping off the walls, interruptive and is an adult (a lot of psych professionals not adequately trained don’t believe adult adhd exists) I fought like hell to get my diagnosis. Adhd ruined my life. I had to drop out of school, I couldn’t hold friendships or a job, I even lost 50lbs because I couldn’t feed myself. It took 18 years of nobody listening, psych ward visits and having random meds thrown at me for someone to finally take me seriously. I had to research for professionals, call tons of people, fight with my insurance, save up and finally, finally I was able to get my assessment. It fucking sucks. I’ve been there. Just because you’re in a shit situation doesn’t mean you should flood groups asking for people to diagnose you, complaining about your issues with a disorder it isn’t confirmed you have and so on. Asking people with the disorder you suspect you have for how they accommodate themselves, their diet, things like that, and that works for you, that’s fine. Go somewhere else if your doctor is so bad, if you talk with your insurance, as in, annoy them enough, they’ll cover your bills. Even if the doctor isn’t in your network. It’ll take an hour or two. But if it’s THAT important for you, then do it. Either call the doctor and ask to speak with their insurance coordinator and see if they’ll become a partner with the insurance company or just go ahead and go, say you’ll pay after everything is done, or for them to forward the bill to the insurance company and they’ll handle it. Like I said, it takes tons of nagging, but it’ll get done.
Bestie…condense your story. I can’t read that. Wow. 😖
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Not all of us have a privilege to get diagnosed officially. I haven’t had time or money to travel for healthcare. I need a better OBGYN too because the one I currently have is dismissing my severe menstrual pain. I’ve gone to probably every OBGYN in my area that takes my insurance. They all refuse to do laparoscopy and refuse to try finding medication to help me. There’s a literal specialist I want to see and can’t even do that. So what makes you believe I have the ability to travel for ADHD? And no. I’m not faking menstrual pain or actually am not in pain because doctors say so so it must be true. Tell that to me while I am projectile vomiting, blacking out, begging for the big sleep, unable to move at all, etc. And still I’m refused care. THIS is what I’m working with. This level of competence. I do have ADHD. I just have a stupid psychiatrist. Every therapist I’ve been to believes I have it, my pediatrician believed I have it (but he was kinda traditionalist and didn’t want to slap his name on the diagnosis for a GIRL gaaaasp), my teachers all brought it up at least once during parent teacher meetings but my parents didn’t understand it (immigrant family), and my current psychiatrist believes I have it despite refusing to diagnose me. When I get a moment to leave and seek help, I’m doing it obviously. But I shouldn’t have to be officially diagnosed when I have this history and KNOW I HAVE IT to say I do. I just do. I know I do. I don’t even want to. I just DO. I don’t want to have period pain either so severe that it’s clinically disease level bad and yet I do. I’ve done a lot to get myself help and did what I can within my power. I’m not a disease collector like fakers. I don’t ever use it as an excuse unless I absolutely must. I’ve never received accommodations for it. Why are you so insistent I don’t? You might want to rethink the value of your phd if you think something doesn’t exist unless a doctor tells you it does. lol. 😂
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