navigating the NHS with a Bad Brain

[@ArrowOdenn]

Yep, the NHS is in crisis and the Tories are currently meeting in Manchester to claim that poverty doesn't exist and further reduce the human rights of trans people. I hope that when Labour are voted back in things will change but I fear that the NHS is broken beyond repair. I have been waiting for an autism assessment since 2018. The doctors I see are kind but ALWAYS ask if I might be pregnant and the receptionists seem to be non-human beings who think I am wasting their time.

[@talistheintrovert]

💜💜💜

[@daviniarobbins9298]

I hope things will improve under a Labour government but I wouldn't hold my breath.

[@orillia-jq6yk]

The only advice I have for dealing with the NHS as it currently is, is to get yourself an advocate. A friend or a family member who can go into the appointment with you. Some one you can say to “here is what I want to get out of this appointment” and can come in with you and make shore you get it. I know that it can feel incredibly childish asking someone to do that for you. but if my totally neurotypical parents are doing it for each other because the system is just that stressful for everyone then I don’t think it’s shameful. And I know that not every one can do this because they don’t have friends or family but if you do then this is the only thing I have found that can make this system bearable.

[@talistheintrovert]

💜💜💜

[@maiajarvis404]

I have unfortunately had to rely on NHS system more than normal for the last 4 years for both Physical & Mental reasons. The physical side was actually not the worst, had femoral torsion and needed a derotational osteopathy to reset my femur bones to what they were supposed to be. The surgeon was fantastic! The pharmacy at the hospital not so much. I would like to remind that the Femur is the most painful bone in the body to have broken, and the hospital forgot to take my bloods up until 5 minutes before I was about to leave. They kept me a further 3 hours than planned and forgot to give me my pain meds. Ordinarily I would remember and ask but I was still nauseated from the surgery the day prior so didn't pick up on it. By the time I got home my leg had swollen to twice its size and I was in the most physical agony I have ever felt. 111 were not helpful in the slightest and I unfortunately just had to wait for the meds to kick in. I also had to figure out how to overcome my fear of needles as i needed blood thinners every day after surgery for about 15 days. Then there is the mental health side. I have been fighting to get help in a couple of issues. i am currently formally diagnosed with Anxiety, Depression, C-PTSD and Nightmare Disorder, and am awaiting an ADHD and Autism Diagnosis. However my medications have been messed with constantly, as I am on heavy meds it means if I can't get them I go into withdrawal after about 24 hours of not having one. Sometimes its the pharmacy who have refused to give them to me, other times its the GP who forgot to send through my request, and one time was when I turned 19 and wasn't informed that I had to pay now despite being in fulltime education, being told that its "Only £20" and yet I am an unemployed student who relies on my parents for everything as like I said, I had to learn to walk again and nobody wanted to hire a crippled teen. A mental health nurse attempted to call me Friday of last week but I wasn't given a heads up before hand informing me that this would happen so slept through the call. They said they would try again this Friday, so I kept my day free, deliberately had my phone on me all day, didn't join any live games or complete tasks that required my undivided attention. Didn't receive a call. It is just frustrating and exhausting to keep fighting and fighting and fighting. I'm so sick of feeling like a lab rat to the larger political image and capitalist driven world. It fucked up my childhood, it fucked up my education in three separate educational centres and now its fucking up my healthcare. System is royally screwed up.

[@talistheintrovert]

I'm so so sorry you've been going through all of that, I hope things improve for you 💜💜💜💜💜💜💜

[@tallyshay217]

This feels related to PhilosophyTubes' video on Trans Healthcare (or the lack of it). She spoke on how there's no easy way to submit a complaint, and how there's no way to really work with other people that may have had the same issues with the system to submit a collective complaint or even a suggestion on how to improve. I hope you are able to get your needs met soon, but it sounds rough going through that system (American here).

[@talistheintrovert]

YES that video was very comprehensive, and it's so frustrating how the government just ceases to see us as people the moment we're not neurotypical or cisgender 😭

[@holly.lawton97]

Similarly, my sister was put on pain meds for a year because her neck was hurting her, badly. She had ignored it for a while, but then she started to have issues moving her left arm. She has history of spinal issues, but they brushed her off and didnt test or look for anything for a year until one day, she went back in, broke down in tears saying that the meds weren't helping anymore, her neck pain was worse than ever, the physical therapy wasn't working, and THEN they went "oh, we should probably do a scan to see if your spine is okay". It wasnt, in fact, it was crumbling and they had to do emergency surgery so that she wouldn't become paralysed from the neck down. It took them a year with a patient that has history of spinal issues who was begging them to please find out what's wrong for them to do a scan. A YEAR of brushing her off and pain meds, and it happens way too often. It really does make you not want to go until you're in your worst state because only then does it ever seem like they might take you more seriously, and even then it's not 100% guaranteed. I'm sorry you're having to deal with any of this, it's incredibly frustrating and so upsetting to be made to feel you're overreacting when you can physically feel the issues happening ❤❤❤

[@talistheintrovert]

this is so awful and so scary! i hope she's doing okay 💜

[@holly.lawton97]

@@talistheintrovert just realised I didn't say! Yeah shes fine now, but it was absolutely one of the worst birthdays she had (the surgery was booked in on her birthday), but shes doing good now, thankfully. One of the worst years of her life though, understandably 😅❤❤❤

[@BeccaAl]

I’m knackered mate. Yep. Chronic illness and fatigue is a slow trudge up a steep hill in custard filled wellies! I got my thyroid diagnosis age 17. I’m twice that age + now and have had a lot of ups and downs and downs and downers. But I carry on trucking on. I hope you get a diagnosis, I hope your KZbin channel swells. You’re not alone and hey I’m jealous 😅 I’ve been trying to get a doctor appointment for 4 months now!

[@talistheintrovert]

I hope you get an appointment soon!! 💜💜💜

[@just_peachy3582]

As someone with a fear of needles I completely understand I will pass out getting a finger prick and feel woozy when someone just talks about an experience with a needle. The two times I’ve ever gotten blood drawn were actually very close to each other because I was so hysterical the first time the the nurse couldn’t do it correctly and I had to do it again. And my mom had to trick me by having her friend who is a nurse stop by for a visit and surprised me with it. I promptly had a panic attack and meltdown, I threw up and passed out and then I had to go to school after 😭 Needles are not my friends to say the least

[@talistheintrovert]

I had to get vaccinated to to to Indonesia one year, and I needed three different inoculations and my doctor was so kind he had them all combined into one needle, and my mum didn't tell me when the appointment would be so I wouldn't panic ahead of time and then I STILL had one of thr worst panic attacks of my life in his waiting room. so I feel you 💜

[@just_peachy3582]

I live in America so my experience is different, but I can relate to taking months to build up to one phone call. I was still in high school when covid started and I am still very new to being an adult so most things when it comes to medical care I don’t know what I’m doing and I have A LOT of phone calls to make. I haven’t taken medication or had a therapist or gotten diagnosed with like half the things I have because it takes me so long to make just one phone call and most of the time it goes ti voicemail so when the call is actually returned, it takes me another couple of months to call them back and at that point I’m just playing phone tag for years. I also go to college in a different state so my therapist from home couldn’t legally treat me unless I’m physically at home and then while I was at college she ghosted me so idek lol

[@talistheintrovert]

that sucks so much I'm sorry 💜

[@LacrimosaX]

I’ve been in a similar situation here in Canada but alongside chronic fatigue and body aches my stomach has been bothering me & the waitlist to see specialists is INSANE. When your physical health declines then your mental health plummets & when you’re already mental ill (like me-woo) is a rollercoaster 😅 Keep advocating for yourself and remember you’re not alone friend ❤️

[@talistheintrovert]

I'm so sorry you're dealing with that 💜💜💜

[@bevishhh]

Oh I relate to this so much I could write a literal essay here, I nearly did! From the appt anxiety and giving up to wanting to change your name but being overwhelmed by the process. The amount of times I’ve repeated “Something *is* wrong with me”. The one thing per ten minute appt. The invalidation and dismissal. The constant *hoops*! Can we get together and scream about this please 😭 sending you so, so much love ❤ thank you so much for sharing your experience and letting us know we’re not alone, but I hate that you’re dealing with this too.

[@talistheintrovert]

💜💜💜💜💜💜💜

[@belle132]

Thank you for articulating the struggle to live life with anxiety. I have the same struggles with phone calls and meeting new people. I'm so sorry that you have to deal with all of that, plus the NHS shenanigans. I want to say "It will get better," but that seems irresponsible. What a world we live in. At least we get to be tired together in this community you've fostered, so thank you. Take care

[@talistheintrovert]

💜💜💜

[@pastlesandfish]

"I love the state of this country" Yet people will STILL vote Tory. I feel nothing but despair when thinking about the state of the UK right now.

[@talistheintrovert]

TRULY.

[@dragonflies6793]

Hi! We're chronically ill in America. We have also had a doctor tell us it's because of heavy periods (turns out, EDS!). We have needed a wheelchair for at least a year, I think, and still don't have one; we finally bought a cane off Amazon this summer but that's all we have and the caps on the bottom where it hits the ground are already worn out. We have had blood test after blood test, there are so many specialists and people we need to see who we haven't yet. We're starting to recognize we're hard of hearing, but haven't ever booked with an audiologist, and everything medical is always by phone call so we just suffer. We can't safely drive but the medical transportation for appointments is only offered to elderly folk and we're disabled and young so we get nothing. I feel like that sums it up - we get nothing.

[@talistheintrovert]

I'm so sorry you're dealing with all of that 💜💜💜

[@thefoggysystem]

We are also in such a similar position! Have a-EDS, 0 medical care, extreme menstrual issues, need a powerchair but have none. In Cyprus though, not the USA. We're even supposed to have universal healthcare now but it doesn't work. I hope something improves for you and you can get the wheelchair you need! (also, you wrote "we", are you also plural? ^^)

[@thefoggysystem]

We're also likely HoH/losing our hearing because of EDS. So once again a digital high-five :)

[@dragonflies6793]

@@thefoggysystem We are also plural! Extra high-fives! And much love sent your way

[@thefoggysystem]

@@dragonflies6793 oh, wonderful!!! Extra high five indeed! :)

[@SteppefordWife]

The way so many doctors seem to just go "Yeah, it's probably your period or you're pregnant" to any uterine-having patient (but especially if they're more femme-presenting) instead of doing their job and actually listening and checking for what may be going on is one of the problems I don't see discussed as much as other issues with the NHS despite how many people it directly affects like yourself.

[@talistheintrovert]

🙃🙃🙃

[@xcemeterydrivex]

navigating any system like that set up in this day and age when you're neurodivergent & mentally ill & possibly chronically ill is insane. i'm from america but i still related to this so hard. i also was just recently diagnosed with hypothyroidism & put on meds for that, i'm not having to deal with THAT healthcare system, but i still feel so ignored by every doctor i've ever seen because i'm afab and 18. they even made me take a pregnancy test once when i was like, 15 or 16 even though i TOLD them i wasn't sexually active (i'm ace lol), and EVERY time i mention my symptoms they ALWAYS seem to ask about my period or try and blame my symptoms on me Just Being A Girl (which is also HORRIBLE because i'm a trans man!). not to mention the whole LIST of mental illnesses i deal with that are damn near impossible to get treatment for when the wait lists for every psychiatrist are so long and the therapy i need is so expensive, and i'm also getting very little support from my parents. we are not weak for struggling. this is seriously just a hard time to be a young adult edit as i've just finished the last couple minutes of the video I WOULD LOVE TO SEE AN UPDATE WHEN YOU GET THINGS MORE FIGURED OUT! videos like these help me feel less alone in this! i love your content & will be sharing with my friends!

[@talistheintrovert]

I'm so sorry you've been dealing with all of that!! I hope things improve for you 💜💜💜

[@dylanthompson5421]

I’m so sorry to hear about your Nan’s experience with her brain surgery and how it took so long for them to even fit her in for a scan. I hope she’s doing well now!

[@talistheintrovert]

she is thank goodness!!

[@dylanthompson5421]

@@talistheintrovert I am so glad!

[@jaxofspades549]

Revisiting this video a year later and,, wow a lot can happen to you in a year. When I first saw this video, the struggle of a chronic illness was distant. My illness was a ‘strange something’ that popped up every 4 or 5 months. Now, this video hits a lot closer to home. I need a cane, now. A wheelchair sometimes. Instead of monthly flare-ups, this is the 12th day I’m in a constant state of weakness. I’m starting a medical journey to figure out what this is, and what everything that came with it is. I love your work, but I do hold the sincerest hopes that this video will be less relatable from here on.

[@edenl9975]

I feel like your twin.... I should go to a doc for my anxiety and tiredness but I'm too scared to and feel like there is no point ... I wish the NHS was better. Good luck to you

[@talistheintrovert]

💜💜💜

[@yelena86]

I feel your pain and frustration. My sleeping pattern is all stuffed up and I’m always bone weary tired even if I’ve had a few sleeping pills and sleep for 20 hours, when I wake up I’m still tired, it’s maddening. I can’t function like this any longer. Lucky my kids are on school holidays now and I don’t have to get up early but I miss out on so much. Also my husband passed away this July so it’s adding to everything. I really do feel like I’m drowning. All I can say is I’m sending you all the love and support from across the pond. There’s nothing but taking it one day at a time, minute by minute. Sincerely wish you all the best. Talking about this will help a lot of people 🙏❤️🇦🇺

[@transsexual_computer_faery]

my condolences

[@yelena86]

@@transsexual_computer_faery Thank you 🙏

[@talistheintrovert]

💜💜💜 sending you love 💜💜💜

[@yelena86]

@@talistheintrovert Thank you and same to you ❤️

[@angellovecharm7759]

Jeeze, I'm so sorry this is happening. I hope things get better. (Also I appreciate the community posts, cause otherwise stuff gets buried)

[@talistheintrovert]

💜💜💜

[@jasmine2519]

When I read this title I knew I was going to relate hard to this. I've been chronically ill since 2021, but at the beginning of this year I started to get really bad pain in my hands, and wrists (so bad i basically can't do anything for more than a few minutes without being in severe pain), and boy has it sucked getting help for it. Overall I've been lucky that the main doctor at my GP I've been speaking to has been helpful but everything just takes so long. I get referred for appointments and tests that take months and months just to get booked in and nothing is showing anything, no one has any idea what's going on with me and so I'm just constantly in pain as I wait and wait because NHS waitlist are just stupidely long. And don't get me started on how rough it is to get a fit note. I have to speak to a different doctor at my GP for one every time, and every single one feels like they're discrediting me, and interegating me, as if they don't have my entire medical file they can read, that shows all my history and the treatments I'm getting. It's genuinely all so anxiety enducing, going for appointments, and making phone calls (i'm lucky my doctors has an online booking system or I don't think I could do it). Plus the fact that no matter how hard I try I just can't advocate for myself because speaking to the doctor gives me such bad anxiety, it all just makes me want to give up.

[@talistheintrovert]

I'm so sorry you're going through all of that 💜💜💜

[@milifilou]

Goddd, I remember my process for trying to get a one of mental health appointment at my uni. Filling out that form asking you to explain in detail why you need help, what you have done to help yourself, what kind of support system you have, etc etc, mean while I am thinking: I would not be trying to get professional help if I were under the impression that my friends, family, and my self care app could help. Why are you getting me back into the spiral of thinking I should be able to deal with this on my own. And why, oh god why, would you make somebody who is skipping on cooking and eating healthy meals to be able to finish assignments and a massive fear of making mistakes on a form fill out this massive missive! Shit like this is how I got stuck in a cycle of feeling too bad to get help, and then feeling too fine to realise I should probably get it before its too late.

[@talistheintrovert]

💜💜💜

[@nickthepeasant]

I know I'm a stranger to you but for what it's worth you have all my empathy and sympathy for your struggles. ***k the Tory scum who've allowed the service to slowly rot this way. And double ***k the prats who've commented 'buck up and shut up' style advice to you 😡 Hope things improve wherever they can for you, and soon. Peace and love 😊

[@talistheintrovert]

🙏🙏🙏💜💜💜

[@olgabecci6685]

I'm just halfway through the video, but I have to say that I empathize soooooo much with the stress of dealing with a healthcare system! It takes me so long to master up the courage to call my doctor to book an appointment! Luckily where I live (in Italy), they're starting to move all the bureaucracy on the internet, so I just have to click on staff and anxiety inducing interactions are reduced to a minimum. It is nice to listen to other people who struggle with anxiety talk about these things because the people around me do say "just do it" but I can't TT__TT Thank you again for the video!

[@talistheintrovert]

💜💜💜

[@loriisgorey]

Fighting with a system for over a decade and still trying to be empathetic when your life is being wasted away because you’re not receiving the care you need is a task I don’t think I am succeeding with.

[@talistheintrovert]

🫂🫂🫂🫂

[@dylanthompson5421]

I’m so happy you’re talking about this! I hope it’s a release to be able to talk so openly about your experiences with fatigue and tiredness and how frustrated you are by the state of the UK’s health system! Wishing you all the best, Talis! I’m so proud of you and you’re never alone! Xx

[@talistheintrovert]

Love you angel 💜💜💜

[@dylanthompson5421]

@@talistheintrovert love you too diva! Xxx

[@belindab3329]

The healthcare system in Germany is in a similar situation. I am on the neurodivergent spectrum too, cared for my grandmother for over 15 years and had so many awfull situations with doctors and hospitals, it was heartbreaking and I am so done with this fucked up system. I also can fight for my loved ones, but not for myself and my own health... I send you lots of love and energy to deal with all that shit you are going through ❤ I felt very understood watching your video, I wish you all the best.

[@talistheintrovert]

💛💛💛💛💛

[@randomnerd3402]

Oh woops I thought this would be about National Honors Society lol

[@wrestlersmith97]

Same. That us centricism will get us every time

[@ErinTheFennec]

The whole system is so broken and damaging to neurodivergent people, my ADHD medication was being messed with all throughout university, and then when i moved back home after university i was told that they could no longer give me my medication and that I'd have to go through a massive waiting list to get medication I was already being given before... and so I've ended up stuck without medication because I forgot about the form and now need to request it all again which I struggle to push myself to do... it's just so exhausting...

[@talistheintrovert]

I'm so sorry you've been dealing with all that 💜💜💜

[@ghostporcupine]

❤ I feel you, friend. I'm sorry you're having to deal with NHS nonsense on top of the stuff you're trying to get help for. I always say I wish they would assign very sweet neurotypical people to every neurodivergent person to do all the stuff that most folks don't even think about that just sap us completely.

[@talistheintrovert]

god that's such a wonderful idea 😭

[@lizcarter4521]

Thank you so much! I have MS and, I believe, inattentive adhd. I have some of the same struggles, but you have helped me realise more deeply the struggles that my (12yo) daughter is going through. She has a higher level of anxiety than me and a fear of needles. We are awaiting various opportunities for diagnosis, (neurodiversity galore) which even with being bumped up the queue due to severity, is a wait that you aren’t able to see the end of as you don’t have the -“you are..tenth in the queue”, so no sight of the possible time period to the end of your wait. (I know, partly due to the people being bumped up due to severity). This is not a moan, it just is how it is. Huge careful hugs 🥰😘

[@talistheintrovert]

💜💜💜

[@yelena86]

In Aus the doctor will book me in for an hour session every eight weeks in NSW and I can’t get out of them fast enough. NHS is really fucked up. Abigail Thorne made a video about her horrible NHS experience, she had to send over a hundred emails to her doctor 💔Maybe think about coming back to Aus at least for a while to get help you desperately want and need 🙏❤️

[@talistheintrovert]

yeah trans healthcare is even WORSE it's so scary

[@yelena86]

@@talistheintrovert Totally UK is even more racist and transphobic imo than OZ. Wish you get all the proper care u deserve 💜❤️

[@CrymsynSymphony]

Thank you so much for sharing this experience. As someone who has been trying for a year and a half to try and get my mental and physical health functional I get your struggles even if our systems are different. It is nice to know that it is not just me and to see my own experiences in a relatable way. May you find the answers and solutions quickly. 🌻

[@talistheintrovert]

manifesting the same for you!! 💜💜💜

[@aggylyf]

And here I was admiring how gracefully you hold the microphone 💓💜💙

[@talistheintrovert]

that's so kind of you!!

[@Creaturrous]

How are your described chronic health problems just... so much of what I've been dealing with -- up to and INCLUDING the overheating?? I never have words for things until I hear someone else say them.

[@talistheintrovert]

💜💜💜

[@stealthborn9446]

what you have said makes me think i need to set up some appointments as well. Also I hope you feel better and get what you need

[@talistheintrovert]

💜💜💜

[@penguinmc.4951]

Ohh hun- as you were describing your onset of symptoms at the beginning of the video, I felt the dread grow in my chest for you. It sounded so much like my Fibro. I am sorry your healthcare system is so broken. Getting a Fibromyalgia diagnosis takes too long as it is. One day at a time, and make sure you are learning where your bodies limits lie.

[@talistheintrovert]

💜💜💜💜

[@AlexirLife]

I feel you! I have chronic pain from an injury & ME/CFS. I can't get a diagnosis for the ME. The amount of specialist appointments would kill me, not to mention the $$$ Thankfully I am in Oz so my GP is accessible tho phone appts cost $50 now (with $33 refund). I can only do phone appts now. My GP is 45 min away, I've tried changing but it's impossible. I don't have a point really, other than, it sux huh 🤔

[@talistheintrovert]

💜💜💜

[@dvckduckgoose]

I live in Australia and even though we have medicare it's just as hard and i sympathise with everything you're saying because i'm going through the EXACT same thing - chronic fatigue and pain, low iron, adhd, anxiety, major depression, i suspect i have fibromyalgia, told it my 'womens' issues thats causing shit (i have pcos) and they make things SO HARD to figure anything out. Stay strong Talis, you can do this

[@talistheintrovert]

💜💜💜

[@Alikeablepeach]

Always here for you brother ❤

[@talistheintrovert]

💜💜💜

[@HaznyH182]

This is so relatable. The ADHD assessment stuff, the 6 minutes of a 10 minute apointment, the iron and vit D deficiency & then being told it's your period... just all of it is horrific. What's worse is that it's no better if you go private, even if that was an affordable option. I'm super lucky to get an amount of private coverage at work but even with using that I've had all of the same issues. And it comes with even more draining steps because insurers don't want to pay out for stuff if they don't have to. It's exhausting and infuriating, and I am so so sorry you've had so many more and worse issues with the system. I would love to say something encouraging about things getting better if/when we get a change of governement but after everything, I struggle to be optimistic... Still, I hope you are able to make that part two and that it's sooner than any of us expect

[@talistheintrovert]

💜💜💜💜

[@cantantenoel]

I'm lucky enough to not have any major physical health problems (yet), but as a fellow ADHDer who is a hot mess when interacting with bureaucratic systems, I worry a lot that this will eventually be me when age/hereditary illness/whatever eventually catches up with me. (ETA: I live in the US, but of course we're also a disaster over here! lolsob) So very sorry you're going through this, it sounds like a nightmare and I really hope you're able to get some support and find some answers soon. 💙💙💙

[@talistheintrovert]

💜💜💜

[@LittleMissTotoro]

I have to go to the GP to renew my sick leave once a month. It costs some money (25 pounds ish) and I have to book the appointment, show up, sign stuff to the Unemployment thingy which requires the Safe Login with Phone thing. It's many levels of stressful bureaucracy. I had to say to my GP and my boss that the reason I am shit at following up with the appointment is WHY I AM ON SICK LEAVE. If I was able to book something and show up easily I would be 100% back to work, instead of 25% at work. I am usually fine doing it and keeping on top of things - this is how I know something is wrong.

[@talistheintrovert]

EXACTLY 👏👏

[@crusadingcomrade8873]

I completely understand that feeling of not wanting to make a call. If I can I try to use email or messages as I can more easily get my message out to the person, and more carefully choose my wording too. Also I just dont understand why its one thing per appointment, multiple things could be happening. But I'm not even in this system, let alone change it (I live in the US)

[@talistheintrovert]

💜💜💜

[@Saminthea]

I have Fibromyalgia and when you were listing your symptoms I definitely had a moment of "this sounds familiar!" Though I don't get pins and needles in my hands and feet. I had to have 4-5 rounds of blood tests before we ruled enough things out to say it was Fibro. My chronic fatigue was beyond the point normally caused by Fibro, so my doctor ordered a sleep study and it turns out a lot of it was caused by sleep apnea was well. I hope the experience of diagnosis gets better for you. For my Fibro, ibuprofin, heat, and menthol sticks (like Vic's Vapo Rub) really help, and I use a cane whenever I'm going to be standing or walking for more than 10 minutes. The cane doesn't get rid of the pain, but it does move like half of it to my arms and shoulder so I can go longer before I'm in too much pain to walk anymore.

[@talistheintrovert]

thank you!! I'll definitely keep this stuff in mind 💜

[@trevorstewart1308]

I found this very relatable. Thank you

[@talistheintrovert]

💜💜💜

[@mavordo1313]

I relate to this SO HARD! I think one of the worst things about having to navigate the healthcare system when you're neurodivergent is all the steps involved (at least for me). And it takes a ridiculous amount of energy just to get through step one, only to find there's more steps. It's like reaching the top of a hill just to see another one you have to climb. Getting an ADHD assessment is its own personal hell, and often it's hard to see the benefit of putting in the work when it takes so long to see any results. I've been putting it off for over a year. And you're right about the Aussie healthcare system, it's far from the worst in the world, but like every system it's designed by neurotypical people for neurotypical people. I just hope that things will be better some day so people like us don't have to fight through every process just to get the help we need.

[@talistheintrovert]

👏👏👏👏

[@LinnaAP]

The cramps and child birth thing get me so angry too! Like, I just made 30 years yesterday and only last week I took medicine to stop menstrual cramps, you know why? Bc I thought, "oh it's not so bad, I got it reduced to only 1 day of pain instead of the 3 or 4 that was before I took birth control, so it's fine, I can take 1 day of pain, it not so bad, there people who can't even get up those days!" It's awful, we just learn to suck it up and pretend it's okay to feel bad bc we still can function to some level, doesn't matter that most often we HAVE to function bc either there's no one to do things for us or bc people don't believe it's bad enough for you to take a break. Anyway, it sucks😂😅😢

[@talistheintrovert]

💜💜💜

[@dylanthompson5421]

Omg don’t get me started on hospital/ GP receptionists! They are so unnecessarily rude! Like the amount of times I’ve finished calls with them on the brink of tears because I’ve been accused of wasting the doctors time because I missed my phone call appointment because I wasn’t on my break at the school I work at and when I said I couldn’t answer because I’m not allowed my phone out around the kids, I was rudely asked ‘why ask for an appointment now then?’ To which I replied ‘I didn’t know what time you were going to call’ 😭

[@talistheintrovert]

😭😭😭

[@daviniarobbins9298]

The NHS is bad right across the board. It took about 18 months to get a autism diagnosis from GP referral to result. I guess I was lucky, I was told the waiting time was at least 2 years but I got seen in a year and 6 months later got the result. I am transgender and I have been on the waiting list now for about 29 months roughly and still probably got another 3 years to wait and that is just for the 1st appointment. It is so bad the clinic I am waiting on has closed their doors to new referrals. It took 5 months to get PIP for my autism and I only got awarded the lowest level of the daily living payment. I suppose I should be grateful but it is only £68.10 a week. Probably have to claim ESA or whatever it is called when my dad passes away and have to go through all that stress again just to get an extra few quid a week.

[@talistheintrovert]

I'm so sorry you're dealing with all that, you deserve so much better 💜

[@daviniarobbins9298]

@@talistheintrovert I wish I could afford to go private but I don't have the money to do so. Looking at over £1400 over 2 years. Out of reach.

[@daviniarobbins9298]

@@talistheintrovert My dad passed away this Monday gone. I am all alone now.

[@notquiteagiraffe2186]

Relatable content. I'm with you.

[@Karishma_Unspecified]

I didn't realize that my neurodivergence might be one of the reasons preventing me from getting a doctor's visit. That and the depression, anxiety, and overloaded medical system in my country... Cheers to the fuckery my friend! I wish you well.

[@talistheintrovert]

🥂🤌

[@ookamiblade6318]

I have CRPS which is similar to fibro, but localized and supercharged in intensity. I describe it as basically my body forgets to turn off the pain response to minor injury and then amps it up at the slightest touch. I’m in the US and our system is also ill suited to neuro spicy people. I also have EoE which is like eosinophilic asthma of my esophagus. That one has been a nightmare to deal with. I got into a clinical trial with a drug that was working and one year in, a month away to my year of free doses, they cancelled the trial as another drug beat them to market. I went in for that drug and had a reaction to the injection that the nurse exclaimed she had never seen before (always comforting, but not my first panic the nurses rodeo), ended up with shingles. Now I'm stuck trying to get an appointment with an allergist to try and see if they can diagnose me with one of the conditions that will allow me to access that first working med... I still haven't made that appointment because it’s just so much to deal with. Anyways good luck to your medical endeavors!

[@talistheintrovert]

that's awful, I'm so sorry you've been dealing with all that 💜💜💜

[@ravendeangelo714]

To put this up front, anxiety is not one of the challenges I have as a hurdle in life, so please give me a bit of grace if I miss my mark. I recently had to go through the process of getting diagnosed with epilepsy in rural USA with no car and not being able to drive because of seizure risk. It was incredibly hard to admit that I had to rely on loved ones to get me to hospital appointments and drive me to the grocery store, but I would not have made it where I am without asking for their help. The faceless system can be a mountain of doom, but there are more Samwises out there if you are able to ask. Despite relying on people for so much, I felt more empowered than when I was trying to do it alone.

[@talistheintrovert]

💜💜💜

[@cassiusvoidkin]

I have every symptom and health issue you have. In the US. With no insurance. 🙃

[@talistheintrovert]

I'm so sorry!! that sucks extra hard :((( 💜

[@SnoFitzroy]

I'm glad you mentioned the connection between anxiety and needle issues. I generally don't have problems with needles but the millisecond one is targeted at me I go internally ape shit. I have to tell the doctor to give me AMPLE warning before the needle becomes visible and make sure they have it completely put away before I can open my eyes again, and the whole way through I'm gripping the arm of the chair with my free hand like im trying not to fall out of a helicopter in an action movie because this is basically the only time "fight or flight" triggers as "fight" for me. and I feel like shit the whole way through because I don't wanna be a combative patient. It takes some of the most extreme mental and physical self control to not just grab the doctor's arm as the needle is coming out of the box and idk breaking their wrist or something. I don't know why I'm like this. Like I said, needles aren't usually a problem, it's just when I know I'm the target of the needle in question that everything shifts and I feel like I'm in life or death self preservation mode. My only theory is that it's PTSD because I know the first time I had blood work done I made the mistake of uh. Looking Down. And the image of a three inch black line in my arm is burned into my memory.

[@talistheintrovert]

Yeah I simply will never look at one if it is in any way intended to be in my body on pain of death 🙏🙏🙏

[@faeriegraver]

This is really relatable. I don't have the mental or physical energy to go into it too much... But if you get treated poorly by a GP or another medical professional, ask for someone else. My current GP is terrible. It's taking me ages, but I'm slowly starting the process to see another GP at the same practice. There's two who seem nicer. The last straw was when my GP waited until after the 6 week deadline to fill out important forms for me, and was condescending and worse in the appointment where we filled them out. He also couldn't understand the concept of the deadline. It's going to take me months to do. But I am changing my GP. I need to know I've got someone who will actually do stuff like fill important forms out in time. Mental health worker, GP, or whatever, you have the right to ask not to see someone who is not working well with you. It's the biggest piece of advice I can give.

[@talistheintrovert]

I am so sorry you've had to deal with that, I hope things improve for you soon! 💜💜💜

[@faeriegraver]

@@talistheintrovert I hope things improve for you, too. It's so bad right now. Gonna get progressively heavier and more triggering in this comment so TW from here. Where I live, if you're with one service, you can't access others. I'm currently working with drug and alcohol services. So there's several mental health services, and eating disorders services, that I can't access. Even if you're stable on prescribed medication through the drug and alcohol services, or clean and sober but you still want support, you still won't be able to get seen by other services. Which is wild to me, being as the people struggling with addiction issues are basically self medicating so they need help with the root cause or causes that goes beyond what drug services can provide. This bit is really unpleasant: Both my current GP, and my previous one have said and done appalling, unforgivable, inexcusable things. The forms my current GP was helping me fill out were for my benefits. I receive benefits purely for mental health issues. Luckily the fact that he didn't get them sent off in time didn't affect my benefits. I was having a panic attack in the appointment, and I said I hope they don't stop my money. He scoffed and replied that it didn't matter if they did, we can appeal. But the appeal process can take months and I would have not been able to survive on what was left if this benefit was stopped. The last question on the form was about being able to get dressed. I said, that is something that I've been struggling with more than ever. Even when I was at a homeless hostel I used to change into pajamas when I got into my room. But now I wear the same clothes for days, even weeks at a time. His response was to scoff and say "but you can *physically* get dressed, can't you?" I pointed at the form and said that I could technically physically do all of this. I don't have a physical health issue that's preventing me from being able to look after myself, it's all mental health. His response was "good point". This was at the beginning of this year and I've still not managed to officially change my GP. I've also not complained. I went on the surgeries website to see if they had a doctor who specialises in mental health. Only to see my current GP list it as one of his. At one point, several years ago, my dad wrote to my GP expressing how worried he was about me. My GP spoke to him on the phone and told him not to bother wasting time worrying about me, as I was "a lost cause." Worse than that though... I was in a severe abusive relationship for nearly a decade. At this point I was getting the medication I get through drug and alcohol services from my GP. I went in one day with facial injuries, from my ex. This is when I was seeing my previous GP. So I ended up crying, and explaining the assault. His response was "what kind of provocative behaviours have you been exhibiting to make these men want to hit you?" I was just in shock for the rest of the appointment, left in floods of tears, and then I got really angry. I even wanted to complain. But I would have had to change not only my GP, but probably go to a completely different practice and I just didn't have it in me. So I just kept seeing him because I needed my prescription from somewhere. Anyway, I apologise for writing an essay. This is a topic that gets me worked up. I don't like to think about how many people are being completely let down by services that have been cut to ribbons to the point they're not working. This video is especially close to home as I really struggle to pick up a phone for an appointment or something else for myself even if it's vital

[@bakedpotato1717]

American here, thanks for explaining I thought you meant you could hold your own in a rap battle - beat test 😂 Gonna edit with more thoughts, but need to remember to thank you for that laugh I desperately needed today ❤ I’m sorry, you can only talk about ONE thing per 10 MINUTE appointment???? God I’d write a full essay in preparation, the pressure of that alone would clear out any prepared thoughts cause time anxiety! I am so sorry your GP treated you like that!! Medical misogyny kills, and thank god you were there to save your grandma’s life ❤ Can you report your GP? Where I am (at least in my state idk about other states), I can not only take the survey they send me after every appointment (or opt out) but also report more directly about doctors’ malpractices (Washington Medical Commission) Although, with executive dysfunction, general and direct medical anxiety (it sounds, I don’t want to armchair!), and depression that can feel very overwhelming in and of itself, I’m so sorry you’re going through this ❤ I hope your government gets it tf together (Can’t help but feel the message “representation in lawmakers matters” is loud and clear and fucking important)

[@talistheintrovert]

you're so kind! I'm glad I could give you a laugh 🥰

[@angellovecharm7759]

Also yeah, industrialized systems are awful. People are not a product to be churned through. Its not good for neurotypicals, but it's even worse for neurodivergents. I read something that talked about how we (neurodivergents) are the canaries in the coal mine. When we start dropping, it's a warning the whole things is broken.

[@talistheintrovert]

🤌🤌🤌

[@Alex-ki1yr]

Damn, this is wild. Keep on keepin on 💜

[@talistheintrovert]

💜💜💜

[@tracik1277]

God I relate to this so hard! It’s nearly a year ago that I had a brain haemorrhage and did not think I should call an ambulance. After this I had an MRI and as well as scoliosis (which I already knew about), it showed cervical stenosis (narrowing of the spinal cord canal in the neck). I got sent to a physiotherapist who did a lot of reflex tests on me which showed I reacted too much x consistent with the stenosis; he was also very interested in the fact that I have a hairy patch on my lower back, again consistent with the stenosis, and he wanted to take a photo of it but I refused. He asked me if I got pins and needles in my hands and to watch out for it because it’s connected to the stenosis, he said my chronic pain is probably due to my spinal deformities. When I went to see him again he almost fell over himself to diagnose fibromyalgia, despite the fact that I felt I hardly matched the criteria. Then my GP wanted to put me on a strong antidepressant which apparently is the treatment fro fibromyalgia. I refused because I wasn’t convinced by the diagnosis. How is it that I have scoliosis and cervical stenosis and rather than those being the cause of my chronic pain, which would seem logical, it’s suddenly fibromyalgia which I have hardly any symptoms of?

[@talistheintrovert]

I'm so sorry you're dealing with that! 💜💜💜

[@icicleditor]

"Executive disfunction is very misunderstood" PREACH I KNOW I HAVE IT BUT DO I KNOW HOW IT EFFECTS ME??? HAHAHAHA NOPE

[@talistheintrovert]

👏👏👏

[@Jenntully]

I can't comment on the NHS, but boy can I speak to the US system. It is totally and completely BORKED. I have insurance through my job. It's crap. If you're young and/or healthy, it's fine. But as soon as you throw any kind of chronic condition that needs regular monitoring, it's insane. And diagnostics? Forget it. Spouse and I are both trying to get things diagnosed but we can't afford it. Blood work alone for him would be $1600 and there's zero guarantee that any of those tests would actually catch the problem. I suspect I have a connective tissue disorder but getting a doctor to LISTEN to me and actually do the clinical tests is like trying to convince Donald Trump to stop spray tanning. I'm fat, old and female. These are my problems, not the underlying health conditions that no one will bother to take the time to actually check for. I'm with you on being tired. I'm just tired. I'm tired of being unwell, tired of having to throw a hissy fit to be heard and then be discounted because I had to throw the hissy fit in the first place, tired of not being able to afford to be well.

[@talistheintrovert]

💜💜💜💜

[@simrabawany2546]

I live in a third world country as a not neurotypical person. Nobody ever takes my health issues seriously to the point where I've stopped going to any medical professional, if I die I die. Atleast I will not have to hear another doctor tell me to eat more fruit and vegetables to cure my scoliosis and get a husband to cure my anxiety :\

[@transsexual_computer_faery]

😔

[@talistheintrovert]

I'm so sorry you're dealing with all of that 💜💜💜

[@simrabawany2546]

@@talistheintrovert Atleast I have the internet and the possibility of a better future. Idk how my ancestors dealt with it

[@simrabawany2546]

@@talistheintrovert Also thats very sweet of you to say

[@amsie02]

thanks for this video it's SO exhausting:(

[@talistheintrovert]

💜💜💜

[@cherry.blossom_tree]

Talis... I know we don't know each other, but holy heck, do I feel like we're spiritual sisters. I only recently got diagnosed with fibromyalgia after a six year pursuit, and even then it was from a rheumatologist I saw through my private health care through work, which I know is an extreme privilege. I too am neurodivergent - autistic dx received 2016, adhd dx received 2020, longterm depression & anxiety, self-identified c-ptsd. Getting the autism dx was extremely traumatising, so I went private for the adhd assessment, which again, I know is extremely privileged. I'm also in the UK, but originally from the US. The NHS when I first moved here 15 years ago was so much better than the expensive healthcare in the US, which I avoided using. While it helps to have my AuDHD & fibro dxs, I still feel like the chronic fatigue isn't recognised as being an additional condition on top of the existing ones. And don't get me started on how fucking ableist DWP is when it comes to applying for PIP. I have cried so much in the last 14+ months since I first applied. Tribunal date still pending. Just know, I hear you. I see you. I feel your pain & exhaustion. 😔💕

[@talistheintrovert]

💜💜💜💜💜💜

[@laur8008]

I had something similar happen earlier this year. I was fine and then at the end of January I hit a wall and was exhausted all the time. I would fall asleep on the way to and from school, at school. It was very difficult to get out of bed. We found out that my Vitamin B12 was WAY low. Like I’m the 100s when it should be closer to 1000. I also have ehlers danlos which is when you’re joints don’t works so your muscles work extra hard. I also have autonomic dysfunction so my nervous system can’t regulate anything. I get really hot and really cold and I can’t transition to exercise smoothly. I live in the US so I guess it was easier to figure this out as long as you have the time and money and patience because specialist take forever to see and they never talk to each other. We started functional medicine which is like a specialist in everything and they spend like 1hr and a half to 3hrs with you at least at your first appointment. Idk how healthcare and stuff works since I’m still a minor and I don’t have to deal with it.

[@talistheintrovert]

💛💛💛

[@celia1888]

As a french person, I feel ya, they've been destroying our system since the beginning of the 5th Republic but they got a push from the 80's and then 2010's, so we're catching up to you guys in some ways (and worse in others). And dealing with health is horrible (you have to wait for weeks for a GP appointment when you're sick so it makes everything even harder for ND ppl, tho stuff like Doctolib do help quite a bit). As someone who was diagnosed with MS and fibromyalgia and has similar symptoms, it could also be EDS (I've been trying for a diagnosis to see if I have MS+fibro or EDS for 2 years, I'm still nowhere near close to getting close because I need to see 5 different specialists for them to see if it might be EDS but they don't give any names of specialists who actually know what EDS is). Apparently EDS is not an uncommon commobordity to Autism and to a lesser extent ADHD. And it's mistaken for the MS+Fibro combo often enough that it has been noted. diagnosis are hard

[@talistheintrovert]

I definitely don't have EDS, but thank you! 💜

[@nitzeart]

I'm so sorry you're going through this 😢 I'm sending you strength and energy and good executive function days for you to get through this. I hope you get an answer soon. Hugs. And I hope this channel blows up! I'm from Mexico and I think our public health is sort of in a similar, maybe worse, state. Entirely overflowing and breaking apart for lack of funding and space. We don't even have HPV vaccines or tetanus shots. We haven't since 2020. People are dying and crawling to get their medicine, which the system stop carrying. Like you basically have to 'entrepeneur' your treatment. It's awful. I have been wanting to get an assessment for mental health for over a year because I reached a breaking point after the pandemic. But I'm so deep in the hole I totally understand how hard beurocracy can be for someone struggling mentally. I've also been struggling with extreme fatigue and constant headaches, though I think all of that is mental health related. I will probably have to go to a private therapist or psychiatrist first to get a diagnosis. Which isn't exorbitantly expensive but the costs add up. Because the public health system is horrible and the mental health public services basically non-existent. I also no longer have my Uni services because I graduated last year. I'll probably try looking for free services in my university campus with the medical and physiology schools once I have a diagnosis. Luckily I have a family that supports me but I know I have to get better soon so I can stop being a burden for them. But if I ever get more sick before I have a stable job, I honestly think I might just die right there because the alternative isn't viable.

[@talistheintrovert]

I'm sorry you're also having a tough time, I'm manifesting us both getting some better help! 💜💜

[@KAIMAOFFICIAL]

Oh dude. I’m only a few minutes into this and it’s breaking my heart because same. I’m currently undergoing investigations for MS which as you said is terrifying but when the fatigue and pain you’re describing started for me a few years ago it was diagnosed as fibromyalgia ..and my endometriosis doesn’t help. But the fatigue and pain have gotten so much worse, hence the MS investigations and I know I’m probably going to agree with everything you say but yeah dealing with a bad body and bad brain in a fucked up system is the worst, and I’m sorry you’re struggling too. Bone tired. Couldn’t have put it better myself. I’m sure I’ll have other stuff to say after I’ve watched this too, but thankyou for talking about this. It’s a shitshow.

[@talistheintrovert]

I know I already said it in my voice notes but I'm so sorry you've been dealing with all of this 💜💜💜

[@justinnutter9008]

Will never understand people who downplay period cramps. non period muscle cramps suck enough already, so its not hard to believe that uterine cramps can be debilitating. I got a Charlie horse yesterday, almost cried, and laid in bed for like an hour til I felt better...

[@talistheintrovert]

👏👏👏

[@viktoriavadon2222]

I feel you. My country also has a state sponsored health care system that's been getting less and less funding, many health care workers have left to work abroad, our system is overwhelmed and understaffed and underequipped. I think I have autism but I've been putting off trying to get a diagnosis for similar reasons, trying to get a foot in the door in this system is hard enough for neurotypicals, and when I live life in a constant state of burnout already I just can't muster the energy for it. Add on top of that some yummy stigma and likely invalidation cuz I'm high masking, but I'm also very anxious and sensitive to invalidation, and it's the cherry on top of a cake called "yeah nahhh". It's just, I don't know. I don't have any useful advice, just felt good to vent, and hopefully you feel less alone hearing our stories too. I certainly feel validated hearing your experiences, so thank you for doing this.

[@talistheintrovert]

That sounds very stressful, I'm sorry you're dealing with all of that too! I do in fact have a patreon, I'm just not very good at advertising it lol, but I've linked it in a community post for people to find! 💜💜💜

[@charlesshorrock]

First, thanks for your continued passion and straightforward style, even in the face of what sounds like a just an exhausting shit show of an uphill slog in search of care. While it is true that compassion fatigue is a real thing and increased dramatically as a result of the pandemic, it doesn't mean it's ok to treat people poorly. The organization and the individual remains responsible for making sure that people on duty can and are providing a respectful and compassionate experience to patients and their families. You are a much nicer person that I am when it comes to making room for the bad behaviour of hospital/clinic reception staff. I completely relate to being able to advocate for others yet not for myself. (i did once drive myself to hospital with an anaphylactic allergic reaction rather than ask a colleague) You have the right to bring someone along who can advocate for you. If you're anything like me, trusting someone and asking them to do that is it's own hurdle, but one which would hopefully make future ones at least a bit smaller. As a former patient advocate here in Canada, I frequently referenced Australia as an example of a system that, while not perfect, was better than many because it wasn't just saying it wanted to be more patient focused, it actually took action to reflect and engaged stakeholders, including patients, in its efforts to change. Sadly, although our countries are praised for having universal health care systems, there are so many people for whom it is neither universally accessible nor seems to be particularly caring. It might not feel it at the moment, but you're pretty awesome. True story.

[@talistheintrovert]

you're so kind, I hope you're keeping well! 💜💜💜

[@shycat2167]

I’m exhausted and don’t have anything to say but I’m mostly sure comments boost stuff to the algorithm so that’s what this is I guess

[@talistheintrovert]

💜💜💜

[@dylanthompson5421]

Not the doctor saying it’s just your period! 😮

[@talistheintrovert]

I love being a female presenting person. Big fave.

[@joy7367]

i really need to get tested for adhd but *this* terrifies me

[@talistheintrovert]

💜💜💜

[@cadence1343]

I've been going through something similar recently I've had chronic headaches for years now, if I'm awake my head is sore at some level But they've been worse recently, and I had a few other medical problems that each felt 'not bad enough' to need an appointment, but collectively had me worried So I went with my mum to the GP, and she did a bunch of tests and it all came back normal When we got all the results back, and no answers, I asked my mum what's next - another appointment to do some other tests - and she said that the GP tested 'for everything' and since it all came back normal there's to do about it. That there isn't any more tests to do I'm not sure I can express how awful I felt in that moment I don't know what's wrong. I don't know what caused the headaches in the first place, never mind why they got worse And now the person advocating for me has given up looking for answers I feel hopeless.

[@talistheintrovert]

I'm so sorry that you were invalidated in that moment, you deserve so much better than that 💜💜💜

[@Enkiaswad]

I also was scared I had MS once. Then turns out I actually have it X) People have asked me if I am a bit of a hypochondriac, when I say I have health related anxiety. But what do you do once you've been RIGHT? BTW with some friends and partner I am doing support swapping. I can book doctor's appointments for them, even fill papers sometimes. Somehow doing it for someone else is less horrible, because I can help someone. I am not from the UK, but Switzerland. Once we get to doctors it's fine, provided it's a good one who listens. But insurance admin is hellish. If you don't want half your income to go into monthly premiums, you have shittier models where you have to pay a medical bill out of your pocket and send the receipt to the insurance for a refund... do you see the challenge here? I designed a whole system to be sure we send in the receipts every month, or else we just forget and hundreds and thousands would be just gifted to the insurance...

[@talistheintrovert]

💜💜💜💜

[@nhyalg4076]

I’m not quite sure what the similarities and differences are between the NHS and the Canadian public healthcare system. But, when my grandfather was having heart problems a while ago it took over a week to get it properly checked out and the first doctor that checked it out passed it off as something minor. I forgot the details because this happened years ago but he ended up having open heart surgery and it was barely in time to help him. Also, I have an ADHD aunt that lives in Canada as well, and she has zero diagnosis and zero help even though she can’t hold a stable job. This is more a comment about the government but they advocate giving benefits to the poor but don’t actually do it in reality. She’s gotten some help here and there but it took over a year to get it and my mom (an American, my family lives in the US) literally had to also start calling on behalf of my aunt to get her any help. My mom has always thought that healthcare systems should be both private and public but I’m not sure if that’s a solution cause I haven’t thought about it seriously lol But in any case, you’re not alone in having picked a bad lottery ticket for mental illnesses; my younger brother (16) succeeded in inheriting every possible mental illness in my family- so he’s schizoaffective, OCD, ADD, auditory processing, and also debatably on the autistic spectrum. We live in the US but even with being able to pay for private healthcare it’s a nightmare trying to get the right help for him and it’s basically placed on my mom to be his therapist (she jokingly refers to our house as a psychiatric ward) Hh anyway though, good luck with your blood test 🥲

[@nhyalg4076]

I must add that while im an American but still had to take that dang pacer test

[@talistheintrovert]

💜💜💜

[@sep.s]

18:28 Do you have a Patreon or Kofi that those of us who are able to can contribute to? Thanks!

[@talistheintrovert]

I do in fact have a patreon, I'm just not very good at advertising it lol, but I've linked it in a community post for people to find. No pressure at all obviously! 💜💜💜

[@BooksRebound]

Look, as a fellow sicko, I'm really sorry you're going through this. I was in constant agony for over a decade and it grinds you down til theres nothint left except the urge to escape the pain by any means necessary. I intimately understand how annoying unsolicited health advice is. But I think you should get tested for Lyme disease. Just to rule it out even if you don't have it. Lyme is debilitating and the longer you have it without getting treated the worse things get. I've been sick for 13yrs and things were so awful that I was going to have a doctor put me down like an old dog since medical assistance in dying is legal here. I suffered 24/7 and if you do have Lyme, you can avoid things getting much worse. Just make sure to really insist and rule it out, because if like me, docs refuse to test you for almost a decade, by the time you get the results, the damage will be irreversible. Thankfully something wild happened and I've been doing better. But I was literally days away from death. Third unaliving woulda been the charm is guess, especially when I have a doctor helping lmao

[@talistheintrovert]

I don't have Lyme - it was the first thing I thought of because my cousin has it and she also spent years not getting it diagnosed and getting steadily sicker, so I appreciate how hard that must have been for you! 💜💜

[@flowerblue196]

I know exactly how you feel I have lipedema fibrosis I'm also a home health aide I work 7 days a week can you get doctor's appointments cuz no doctor for mine condition works no later than 5:00 p.m. my job pays poorly but I can't do anything else with my condition there's more of us that in the same boat in America and thank you for speaking out

[@talistheintrovert]

💜💜💜

[@johanandersson8252]

Netflix and chill or some other streaming company

[@Katty0Shmatty]

We have a very similar system in my country, which is partly why I almost stopped seeing doctors outside of therapists. I feel you so much about all of this and hope you get better or at least get a diagnosis😭 I hope your gran is dong better too. I really like your vids, it always feels like talking with a good buddy, kinda not as "formal" as other uhh leftist channels I suppose haha I hope your channels takes off and you make bank and can go see a therapist any time you want!!!!!!!!!!!!!!!!!!!!

[@talistheintrovert]

thank you!! 💜💜💜

[@Noreen_Ni_Riain]

Hey Talis, I'm a mentally ill Aussie and I hear your struggles. Do you have a patreon or kofi I can contribute to? I want to help ❤

[@talistheintrovert]

That's so kind of you 🥺🥺 I do in fact have a patreon, I'm just not very good at advertising it lol, but I've linked it in a community post for people to find. No pressure at all obviously! 💜💜💜

[@kalka1l]

Seeing many in the comments echoing your frustrations and experience is an unequivocal condemnation of a system optimized to fail patients. You are not alone. This is not healthcare should be. Comprehensive medical care should be the base everyone receives. Don’t let the soul-suckers drain you.

[@kalka1l]

Tips for anyone navigating healthcare with anxiety, fatigue, brain fog, chronic illness, etc. Enlist a friend/family member to be your patient advocate. They can help make appointments, organize records, create and practice scripts and questions, catalogue symptoms/data, and help structure your appointments. This is invaluable when the system starts gaslighting or dismissing you. If you are able to exchange the labor with someone else because ‘washing other people’s dishes is easier than one’s own’ do so. It’s a bit of sorcery that can help neuroatypicals navigate hostile social structures. Another tip: If legal where you are: record your appointments. Sometimes brain fog or mental health issues will eat up memory of what was discussed and physician recommendations etc. it also helps record incidents of medical negligence and cruelty. Other random points: The cyclical tradition of casting aspersions on younger generations has always been garbage. Empathy reviews should be standard for healthcare providers, there should be system supports to help preserve provider empathy and nurture it in those who have lost it along the way. The system grinds us all to dust we don’t have to asphyxiate others because of it.

[@talistheintrovert]

💜💜💜

[@jaycewood7071]

My current issues are nowhere near the magnitude of yours, but I can kind of sympathize? I went to get my blood drawn, again, almost a month ago because I have almost constant headaches (among other things) and they say the EXACT opposite of what they said before because yes, I am iron deficient and also, your blood sugar is weird and we want you to come in to this other test. But noooo, our insurance has given out because my single mother of five children who works up to TWELVE HOURS A DAY, is apparently making enough enough money that we no longer qualify for federal Medicare. So my mum is paying out of pocket for overly expensive checkups for her five children, because they don’t TELL us that we don’t have insurance anymore, as well as dental. And it’s complete bullshit. Not to mention the incredible levels of denial about my own mental health I’m trying to dissect, because I’ve managed to convince myself that I’m pathetic and if I just TRIED HARDER I’d be fine for YEARS. And it’s kind of a lot !

[@talistheintrovert]

that's so hard to deal with I'm so sorry 💜💜

[@LinnaAP]

It so hard to make people understand like something that's "simple" for everyone else is not for you, I don't have the same strong reaction than you but I also dislike to talk on the phone and to strangers speacialy (so of course every other doctor you can make an appointment online, easy, the only one you need to call to? A psychologist, of course! That's why I haven't yet been to one yet even tough it was recommended by another doctor for me to go in January 😂😅😢) . Just a few days ago I had to insist 4 or 5 times that no, I can't have a needle for more than a few minutes in me, imagine 2 whole hours! I would rather be poked 5 times for the exam (even like that I was super nervous and got really dizzy bc of it) than do "how most people did", I'm glad I was respected, even taking a lot of talking, at least I could do it my way and be fine about it instead of suffering for 2 hours for a simple test.

[@talistheintrovert]

💜💜💜

[@jaxofspades549]

For the algorithm!

[@talistheintrovert]

💜💜💜

[@Elly-z7q]

This is very much me Have a thing that i need to talk to the doctors about again and i have no idea what happened but I did so well asking where my results were and the receptionist (I was a bit flustered I was expecting to be in the queue to actually talk to someone a lot longer than I was) was very nice and said they’d check it out and still waiting this was early March (song lyrics whatever courage i had started to mildew or something) Next time i talk to them about it I am going in with notes and a person being named dropped as an update on what happened here in July and the receptionist was rude first thing Monday morning and I had to get a tooth removed and before that had to sign a form saying i was okay with everything that could possibly go wrong (some of which I already thought of) and mentioned i was a little anxious and they snapped at me it wasn’t enough to knock me to much but it did knock me a little (the dentist and nurse were great though really nice just wish i had a signed written form from them saying they were going to do their best something like the opposite of the form of anxiety i had to sign) Sorry if this is a bit weird to read i am on my phone and it keeps freezing as well so yay tech problems

[@talistheintrovert]

I'm sorry you've been having a hard time too!! 💜💜💜

[@Elly-z7q]

@@talistheintrovert its one step forward and a step or two back sometimes But luckily people understand and are cheering each other on

[@pipermarau]

i havee fibromyalgia and it is fucking hell. i'm sorry if that's what you are dealing with.

[@talistheintrovert]

💜💜💜

[@dawnemulcahy4798]

🤎🤎🤎🤎

[@talistheintrovert]

🖤🖤🖤🖤🖤

[@Karishma_Unspecified]

I guess my brain didn't process you were in the UK until this video... This explains the very strong opinions on JKR (I mean, I can avoid/block her and her stuff pretty easily and i imagine its harder to do that, and ignore her influence, for you) I'm sorry man!

[@sep.s]

Also I feel you on the waitlists. It took six months for my child to be added to the wait list for an appointment because the doctor we saw forgot to make the referral until I had chased it. We now need to spend at least two years on the waiting list to actually be seen 🫠

[@talistheintrovert]

I'm so sorry, that must be so difficult for you to deal with 💜