My Experience with Cognitive Issues (Coeliac)

[@TheMovingFingerWrites]

As a therapist, I want to say to you that there is a desperate unfairness and undeservedness in those events happening to you. The anger that you felt, as well as the irrationality, are very natural, intelligible reactions, especially during the cognitive issues you were experiencing. You handled that paranoia very well. I also want to say that anger is a necessary emotion. You likely know this rationally already. Anger is the emotion that tells us when our boundary has been crossed. A fellow therapist said to me once that not having anger is like having a house without a front door. Of course, your anger is in many ways directionless. But it is not only valid - it’s necessary to feel anger about injustice. Even (perhaps especially) when the injustice is happening to you. Anger and abusiveness are very different things. Anger is ‘clean’ when you allow yourself to feel it and express it without making anyone else responsible for getting rid of it. It’s just your feeling, for you to manage and make choices, in the same way that sadness and joy are also yours to own and experience. I hope that some of this has been helpful. I have greatly enjoyed your videos, and especially your calming and thoughtful presence, which is palpable and soothing. I hope that your making this video has been in some way cathartic, and that the support in the comments is comforting to you. I also hope you get to quit gluten asap. My good friend had a coeliac diagnosis recently and had to stay on gluten temporarily too. But when they were finally able to stop eating it, they felt a massive improvement very quickly. I would say that within a month their symptoms had reduced so much that they seemed almost to be floating with relief and peacefulness. I hope that gives you some hope too. Thank you for your jewel of a channel, which has been a huge comfort and place of enjoyment for me.

[@irtnyc]

This is a truly remarkable comment. One of the most earnest and powerful things I've ever seen on social media, never mind KZbin. Thank you, whoever you are. And best wishes to Simon, who is a (-n inter-) national treasure.

[@peterobara3040]

I really appreciate your honesty and can definitely identify with what you've been through. I had a similar experience with feeling like a force or spirit was making some bad things happen in life, and still do to some degree. You are good at articulating these complex feelings and it helps to hear having gone through something similar.

[@jaybatey5947]

My heart goes out to you Simon. I'm the same age as you, you are a role model to me. Your videos are so calm and interesting and have helped me through a lot personally. You are a person of incredible strength, resilience, intelligence and empathy. I only wish I was half the person you were. You are loved around the world❤

[@susanritter2520]

Your symptoms mirror mine over the decades; am now in my 70s. Have come to understand that most neurological syndromes have highly similar symptoms. My first realisation, in my 20s, was that I literally could not walk and chew gum at the same time. Initially misdiagnosed with MS, until it became obvious I had a brain tumour, which invaded the cranial bone. However, also have had a concurrent syndrome related to MND and Parkinson’s. Family history of coeliac disease, from birth; both parents and most of us siblings. Had no idea the neurological issues were related to coeliac disease. Many thanks for enlightening us, in your audience. Wishing you all the best in future; it’s been decades for my siblings and myself, and we’re all still here, working through it all. Take care, Simon; you’ll adapt and carry on. Best wishes always. ❤️

[@yatoxic1213]

It's quite interesting how it all works. I once suddenly collapsed back in 2017 out of nowhere. While I did have a history with iron deficiency, I have never 'skipped' through time like that. Two years later and my knees felt like they've hit something as I was brushing my teeth. A few hours later, I was walking to the kitchen and it felt like a magnetic force was pulling me to the ground. Come morning, I was found snoring in the bathroom with my head in a bucket. Good thing I unlocked the door in time, as I had come to understand that I was suffering from my first epileptic insult. My sister was diagnosed with ADHD back in 2017. All of my tests came out negative when I was a wee lad, but I got diagnosed with the same type of ADHD my sister has when I was 20 years old. Neurological conditions truly are interesting, but I do not wish the effects of them on anyone. Those moment Simon described while crying on the phone touched me to my very core.

[@bella-bee]

I had a false negative for gluten sensitivity, but I wasn’t prepared to keep on with it, because I felt better without Gluten. You don’t need a camera down you and a biopsy of villi to give you permission to stop! Bless your heart! May I advise you not to bother with any so called gluten-free cereal. There are various forms of gluten in various cereals, and personally I’d avoid them all.

[@SunnyDispsition]

My wife has coeliac disease, wasn't diagnosed until she was 21, when she was three years into a degree with the deire to become a Home Economics teacher. Turns out working with kids and flour means you kinda can't avoid contamination and she had to give that up and work elsewhere in the food industry. She has a lot of these symptoms and experiences. Doctors always just told her her symptoms were "because she's a woman" when she was a teenager. Love that.

[@corstafine]

What did the apothecary recommend...a course of leeches? 'because she's a woman? When was she born, 1246? Urgh, the levels people stoop too, man.

[@melissasaint3283]

You wouldn't believe the way complaints of pain or even very alarming symptoms just get dismissed when you're a woman. And, if it's **actually** related to being a woman (having to do with menstruation or pain in your reproductive system, etc) They tell you it's not that bad, Or they tell you it can't possibly be anything serious because you're "too young for that"... Until suddenly they switch to saying that all kinds of pain or unpleasant symptoms are "normal" and "to be expected" because "you're getting older" and they just give you the impression you have to bear it and there's no tests that should occur and nothing to be done (none of which, btw, is true). In general, it typically takes most women with endometriosis, an incredibly painful and unpleasant condition that can make you infertile, 4 to 11 years of asking for help, to get diagnosed. Many just get told, "well, menstruation is very painful for some people". It's hard going to the Dr as a woman in general. Doctors dismissed my mother for many years, and one, in response to her complaints about pain and concern about some very odd symptoms that were concerning her, just tried to giver her antidepressants without telling her that's what they were. She surprised him by recognizing the off-brand name and confronting him about it. Turns out she has an uncommon genetic condition, related, among other things, to sweating (she can't, which doctors always ignored as a possibility, and which causes her to easily get heat stroke) And blood clotting (high predisposition) Which, by going undiagnosed for many years, ended up causing very dangerous physical health problems. I can't tell you have many times she had serious health emergencies (almost dying in front of me once when I was 4 or 5) before we finally got a good doctor and a diagnosis (when I was 26!).

[@benjammin3829]

@@melissasaint3283that happens to many minority groups. Black people get told that they’re exaggerating their symptoms or making them up, fat people report unusual pain or symptoms and get told to lose weight no matter what it is, and trans people experience a phenomenon called “broken arm syndrome” where they’ll have symptoms and because they are on hormones or may have had some surgeries, the doctors suddenly forget how to do their jobs because they assume that trans people’s must just work completely differently. So the trans person will be experiencing extreme pain while the doctors will be asking them a bunch of questions about their gender that are completely unrelated.

[@ignotumperignotius630]

Yeah all of this and then men are not exempt, since men get told by doctors and nurses to toughen up and soldier on. The problem is with less than objective doctoring.

[@melissasaint3283]

@@ignotumperignotius630 in the US at least, any woman who has struggled to get a diagnosis sometimes gets much better treatment if her husband comes with her and vouches for her symptoms. Sad but true.

[@studioINTEGRAND]

What you said about feeling like you had to act 'more disabled' than you were reflects on a really pervasive and important part of disability advocacy, though I can really only comment on what that looks like here in the states. It's sadly quite common for disabled people who can stand for short periods but really need their wheelchair for living comfortably day to day to be publically berated and harassed by able-bodied strangers for 'faking it' or whatever stick got lodged backside on a given day. That attitude is widespread and aimed at pretty much anyone who uses any kind of device or equipment to ease their disability regardless of severity, some kind of strange expectation that they have it so they must always be 100% reliant on it or they deserve hatred...

[@tracik1277]

I agree with this point. It’s no different here in the UK.

[@tracik1277]

@@martinajohnson Here in the U.K.,tabloid newspapers are allowed even encouraged to spread negative attitudes towards people who need disability benefits. This in spite of the fact that the benefits agencies themselves have admitted that ‘there are 0% of fraudulent disability claims’ just recently.

[@innovativeatavist159]

I understand the feeling of being judged for not being "disabled enough". I'm a 28 year old man living in Tennessee in the USA. I have a degenerative issue in one ankle that causes a debilitating amount of pain and gets temporarily MUCH worse if I'm too active and aggravate it. I'm not in a wheelchair (yet), but I have a permanent disability parking permit that I really only use if all other parking is far away from whatever entrance I'm going to have to walk to. I also have a cane, crutches, and if they're available I often use powered carts or manual wheelchairs in retail stores. But sometimes I've rested for enough days that I'm pretty much fine, and I just stroll into somewhere at a decent clip with a little limp and an occasional twitch or little grunt from the pain. Quite often I will be relatively ok, but still have to use my disability placard to park a reasonable distance from the door. I often find myself limping and wincing more than is necessary. It's like I'm putting on a show for everyone so they know I'm not just some prick taking advantage. I'm embarrassed to need the accommodations I have, and I don't feel "disabled enough".

[@UnknownHumanOnline]

Hang in there brother. Good comment.

[@AJansenNL]

As someone with ME/cfs, I can relate a lot. I'm university educated, but there are days I can't spell, remember my birthday, don't register what someone says, just can't comprehend the simplest sentence, or don't know how to make a cup of tea. Etc etc. It's so disabling. And that's just one part of my disability. The mobility issues... Boy, how I wish I'd got myself an electric bike or mobility scooter sooner. Now my body is so wrecked, I lost all ability to bike, and my scooter sits mostly unused. Don't be ashamed. These tools are wonderful. I hope you find a treatment that works for you and that you'll get back to your old self.

[@JohnSmith-oc3tc]

A close friend of mine is very seriously ill. I can't explain why this video was what I needed today but it was. Thank you.

[@AwareWolf_]

For potential information on sudden illness and potentially linked issues Dr. John Campbell is hugely informative.

[@damescholar]

I follow your linguistic posts, being a philologist and literary scholar who began as a linguist. I feel deep sympathy for your difficulties. You can articulate them so well and I recognize many of them. I am on the autistic spectrum and have also ADSD, as well as three autoimmune conditions (collagen weakness, joint issues, ESD and DDD, some still unrecognized weirdness with my blood cells and hypersensitivity to many drugs and medicines) and a cerebellar abnormality which all are more or less genetic and made my life quite difficult before I learned what was the matter, mainly because my children inherited most of these. Vitamin deficiencies have been connected with these, which I did not know, until my D vitamin and Calcium levels were taken and they were both extremely low. I am now taking 8 supplements every day and my diet is lacto-vegetarian, and physiotherapy tuned to my needs, and that has helped. I am so sad because of your losses. It is really hard to lose one’s parents at that age. I am older but the losses are still heavy. My mother died of pancreatic cancer and my brother of cancer of kidneys. I have lost all my nearest relatives, and my dear husband died suddenly last December, and this last disaster made all my illnesses to flare up - showing how connected our psyche and body are. He was also my best friend and the only one who understood me, so I was devastated.

[@aclearlight]

Bless you for finding the generosity to share your experiences and losses in this beautifully supportive way.

[@dbass4973]

be strong, brother, we love you

[@catholicwombat]

Jesus christ dude, I'm so sorry this all happened to you. I hope you know that even though we don't know you personally there are many thousands of people wishing you well and hoping for the best for you ❤

[@joanaloneathome]

I just want to say a few things here: firstly, thank you for this very open and personal video, it takes courage to be this vulnerable to thousands, potentially millions of people on the internet. yet videos like these help a lot of people tremendously and they contribute to a better conversation about taboo topics like medical/psychological issues. secondly, considering that you feel like your ability to talk extensively and express or describe your emotions is limited, it is astounding how well spoken and insightful you are. I think I‘ve rarely met a person that can express complicated and complex issues in such an easily comprehensible manner and as well as you can! and lastly, I want to thank you for your enormous work. your videos bring me and many others so much joy and I hope you can feel all our gratitude. for the future I wish you all the best, thank you Simon!

[@flannerypedley840]

I would add that neurological problems can be particularly hard for people to understand, and this sort of discussion is important. Thank you

[@heijnderikburke3553]

I've never written a reaction to any of your videos - although I always enjoy them tremendously - but this time I thought I should, just to let you know I was moved to my core by your courage and sincerity in sharing all this. Thank you very much! My sincere condolences for your loss. Please keep making your videos, they are unlike any others I know

[@sheilam4964]

Your ability to describe so clearly what you have experienced and gone through these last few years shows a remarkable intelligence that I have always enjoyed and what keeps me coming back. Thx for doing this, filming it and sharing it with us.

[@flawed1]

I’ve been physically disabled since birth. I feel an enormous sense of compassion when I hear your story. I’ve had my whole life to adapt to my physical challenges and that adaptation has been part of my growth. These things were thrust on you, in what I am sure was a very shocking and frightening way. Any adaptation you had to try to do to continue your normal life had to be done on the fly whereas if you’re born with a disability, you’re used to thinking around problems. You’re used to looking at a given situation and thinking well how can I as a person with a disability complete this task? You were just thrown into the deep end. I’m glad you were not too far away from having it under some kind of control.

[@horseenthusiast9903]

Gods, yeah. Having a health thing like that come up when you're already an adult has got to be such a wrench in the works. I'm thankful my celiac disease got caught when I was a kid, because I didn't have to go through those kinds of symptoms or rearrange my life around it. It was really scary watching my mom struggle to restructure her life when she got her diagnosis.

[@tracik1277]

Thanks to OP for articulating this point, it was something I wanted to mention in my earlier comment, more in relation to autism where Simon was talking about his friend, but I couldn’t quite explain what I meant.

[@CrowIIII]

Invaluable.

[@UnknownHumanOnline]

❤

[@mesechabe]

Simon, I’m saddened to hear all of this, especially the revelation that it was your father who died. And his brief appearances in your videos, I got a glimpse of who he was and now I know he was also your confidant, I have a picture of him that is fuller and clearer. You’re lucky to have a father like that. I loved my father, but he had no way of really understanding many of the things that was going through in my teens and young adulthood. And you are now parentless, which is a condition I didn’t experience until I was in my mid-40s. So you were very very lucky to have had him -- & of course none of us could’ve guessed your condition, with the slowdown in your videos is easy to understand now that we know what you’ve been suffering from. with much respect, from Louisiana.

[@marskristin]

Firstly, my condolences on your loss. And truly 'when it rains it pours' sometimes. I have also lost people close to me in recent years. My heart goes out to you. From someone with diseases related to the ones you're dealing with, I appreciate this video, and your articulation of these issues. It's so frustrating to feel your cognition changing, and trying to describe the problem and have it taken seriously. As an ambulatory wheelchair user, i relate to your feelings re: your walking stick. A wheelchair affords me great freedom, but it's taken me a while to get over my internalized ableism gremlins about how much/whether i'm disabled enough to use it. Just want to gently encourage anyone with autoimmune conditions or exhaustion to take care and avoid viruses, the consequences can be worse than we all thought. ETA: Because of neuroinflammation, I find many videos difficult- too overstimulating- but the birds, lack of background music, general calm in yours, are lovely.

[@SnapdragonALL]

Hi, Simon! I found your channel a couple years ago due to my interest in linguistics. I have an MA in Applied Linguistics. I also developed an issue with gluten and skin rashes about 2 years after I was diagnosed with a baseball-sized brain tumor and had surgery/radiation for it. (2011--and fortunately benign.) About a year and a half ago, I moved from the States to a country with a lot fewer choices of gluten-free food. So, I have been trying to get away with eating gluten-containing foods sometimes. Gradually, I am experiencing higher levels anxiety, memory loss, and heightened bouts of hypergraphia. (I developed some issues with hypergraphia after the brain surgery.) Thanks for the reminder that I should not try to get away with eating gluten. I do best when I eat only meat, vegetables, and fruit. (I add small amounts of cheese and nuts.) I hope dietary changes will help you.

[@arwenspicer]

Thank you for this. I just wanted to say my dad was also an alcoholic and also a very good dad. It's hard for some to understand that those two things can coexist, but you express it very well.

[@nostalji93]

Holy the timing of the thunder! 25:55

[@mattparker9726]

Wow, Simon. I'm sorry for your loss. Powerful video. Thank you for opening yourself up to us.

[@the_real_Kurt_Yarish]

I found this discussion refreshingly relatable. I suffered from "Long Covid" (PASC) for 2 years and a few months, and within the first 7 months of it my dad passed away. He was probably the person I was closest to in the world, so him dying while I myself was experiencing a debilitating condition was a tumultuous experience. It's colored me in a way I would never have thought I would have been otherwise. It's validating to hear someone sharing such familiar experiences, especially because those in my life either can't relate or actively try to dismiss my experiences. Thank you for sharing, Simon.

[@gegemec]

Life's journey is challenging, frustrating and enlightening (I am 70, had AIDS in my early 40s and have been HIV poz ever since, which is not as "cured" as the press would want you to believe), I am grateful for your thoughtful posting. A good "ramble" is worthwhile from time to time, one does not always have to make a lucid point. I wish you the very best as you proceed. I feel you have great strength to deal with life hurdles. Keep well and keep up the good work on line ... it has been a good part of my own online time to settle in to watch one of your chats.

[@CourtneySchwartz]

Deep gratitude and respect. Articulating the problem is a choking struggle when the brain decides on mutiny.

[@sleepycalico]

Thanks for sharing with us. My dad had some of the same processing difficulties after his stroke. Others of your difficulties were entirely new to me. It's all abstractly interesting, not alarming. The one thing I couldn't discuss with my dad was his hallucination that drops of water sometimes fell from the ceiling. He was convinced I just didn't look fast enough. It didn't matter that everything was completely dry. Nothing could overpower his belief in what he himself saw. Beliefs he could mull over. Things "seen," no. One time, just the once, he also "saw" big angels comforting him at night when he was alone. So I put one on his headstone to always stay with him, and it comforted me. People are funny. Sorry for your loss so early in life. Much love to you.

[@applewagon253]

So humbled that you were willing to share your recent experiences so honestly and eloquently. I’m sorry to hear about your struggles and the passing of your father. I pray you heal.

[@maverick_monkey]

You are incredibly skilled at articulating what you experience and what happens in your head. (I do realise that we’d all probably say that that’s almost impossible to convey well to other people, maybe especially entire strangers, but I feel like you’ve really managed to paint lots of things very vividly here and it was truly interesting to listen to you.) I also wanted to say that you seem to have a very sensible way of approaching difficulties in life. I mean, this video is a really thoughtful reflection on things you’ve recently went through. I don’t know if this makes any sense, but it gives the impression that you’re interested in your own life, that you respect it enough that you care to think about it with consideration and try to understand it, which I think people sometimes engage in too rarely, both for themselves and others. It feels really frustrating that you can’t talk to your dad anymore, especially about things like these. I’m really sorry for the loss. So thank you for talking to strangers about all this, you’ve filled that role of “someone to talk to and empathise with” for many people by doing so.

[@LeeGee]

Random viewer here wishing you the very best of luck for the future. The work on your channel is leaps and bounds ahead of many I studied with to get my MSc in cognitive science.

[@erstwhilder5899]

So sorry that you lost your father. It sounds like despite his problems you had a good connection which many people do not get to have with their parent. I'm sure you will miss him very much.

[@ladyofwessex]

Hi Simon, I love your channel as an aspiring Early Medievalist who is trying to learn Old English. I was diagnosed with Coeliac, through the non-endoscopy pathway, when I was 11 years old having had mobility issues, muscle pain, and fatigue and now I’m 18 it’s stressful considering how my life will change once I go to university. Hearing your story and your experience with loss is really touching and I appreciate you spreading the word about Coeliac as it is so important to raise awareness of it.

[@buckbell7784]

Thank you for sharing this. Please be well. Nearly a year ago I left a little comment about how I was preposterously out of place after moving to a city for the first time and you were nice enough to wish me well - even though it felt impossible then, I find myself feeling at home here now, and happy in ways that I haven’t really been before, renewed and reminded that good things can happen. We see what each day brings. The truth inside the platitudes. Just thought I’d share that. Thanks again for doing what you do.

[@missnellie33]

Thank you for opening up and sharing your experiences. I hope you are doing ok. I have been watching your videos for several years and have always found them incredibly interesting and so well researched, while also showing your practical genius and emotional vulnerability. You are impacting so many people you will never meet and making the world a better place. Please take care.

[@terdragontra8900]

Oh, how I wish people as decent and genuine as you didn't have to live in a universe that throws such crap at them! Thank you very much for sharing.

[@haoburke]

I'm far away and we'll never meet but I wanted to wish you all the best and thank you for making the world a little more wonder-ful with your videos. Take care, Simon.

[@noblemira757]

My condolences on the loss of your father. Take care Simon.

[@zooblestyx]

First thought to cross my mind when you started out describing things was "folate deficiency", believe me or not. Some years ago, I experienced a sudden inability to put together sentences. None of the other troubles you describe, such as with coordination, etc. I was put through an entire stroke protocol, but it turned out to be vitamin deficiencies, plus a smidge of anemia. So, I got better, but then I had an actual stroke a few years later. It hit my cerebellum, and scrambled my equilibrium, kinesthesia and proprioception. That got better too, if not back to normal. So I have profound sympathy for that part of your experience as well. I take solace in the solemn words of Trevor Goodchild. "That which does not kill us, makes us stranger." Thank you very much indeed for sharing. There is strength in embracing one's weakness.

[@Drewe223]

I feel for you man, this video hit. You’re pretty amazing at expressing your own internal experiences.

[@catpriest]

Showing my support. ❤. One of the few remarkable linguist channels.

[@irtnyc]

Beyond linguistics, it's just a remarkable window into another life and a special person. Who, manifestly, has magnetically cohered a community of compassionate and thoughtful people. This whole experience of witnessing many others care about Simon, and inspired by his candor and vulnerability and self confidence in extremis, open up themselves... just a really powerful moment here in spacetime. Thank you for your comment. And best wishes to Simon for the long road ahead. One day at a time! "It gets better."

[@JakubikF]

I've always fancied the way you think and construct thoughts on linguistics but also other topics. So many aspects of your videos, in addition to what you have actually wanted to say, have always spoken to me unworded such as, seemingly random, glimpses of your garden in the middle of your talk. This video... well, it has made me feel sympatheticly connected to you even more. I would really like to sit with you with huge mugs of tea for both of us and talk and listen to you in person - about languages, about life. Thank you Simon for this deep talk you've given. I wish you soothing moments in every turmoil you encounter. Jakub

[@folkoftheforest]

Simon, I’m very sorry about the loss of your father. From experience, it’s very difficult to watch someone you love die. Please give yourself some grace in your grief. Thank you for sharing your thoughts.

[@devsolovey]

Simon, I can't tell you how wonderful it is to hear you speak about these things in such a radically accepting way. I think anyone in your circumstances might feel like someone or something was out to get them, but you've reached a point where you can recount all of this in a way that's purely objective, with no judgments tied to it. I think your stoic attitude to it all is a great example to set - a lot of the problem with how people think about their misfortunes is the judgment that comes from the negativity bias. The fact that you were able to release that judgment at some point Is a testament to your resilience.

[@eliasorbon450]

I had issues with diet growing up and a family history of coeliac disease. Tried to supplement B vitamins. Eventually grew out of it. Was never officially diagnosed, myself, because symptoms eventually cleared up and I can eat everything now. I am extremely glad you are feeling better. While I don't share your exact experiences, there are many which resonate with experiences I have had and present some similarity. It is so important to respect all perspectives, because we can't know what another is truly going through. We can only give our respect and support. Thanks for sharing. You can emerge from this into the beauty of the world again.

[@locutorest]

I am sorry to hear of your father's passing. I have always found you to be a person of great empathy and good heart. Thank you for sharing this.

[@timothyd181]

Really sorry to hear all of this. My mother and father died less than 2 years apart, one when i was 29 and one when i was 31. It was brutal. I didn't have any concurrent major health issues, though i will admit to self-medicating which may lead to longterm consequences. I relate to a lot of what you discussed, and you're helping me be grateful for the good things in my life. I wish you the best.

[@andrewelliott1022]

Thank you for this. I'm sorry for your hardships but appreciate you sharing your experiences. There is a lot to process. Everyone's experiences are both unique and universal.(Yes, it's a paradox). It is most valuable when someone shares their honesty, even when that is messy. There is a lot of generosity in doing that, which I appreciate.

[@vladimir520]

Thank you for sharing. I am going through something quite unpleasant and hearing your story has helped me realize I'm not alone.

[@johngavin1175]

Watched your two newer videos,and this one popped up in my recommendations. I'm very sorry for your loss. I have some similar things happening to me,like tremors. I have been subbed for a couple years I believe and between this video and the two newer ones,I definitely empathize with you on a different level. I have had a history of a temper too,its terrible to admit to at times. I personally am dealing with OCD and intrusive thoughts, and I have things going on that are similar to what you have gone through. I do hope things get better for you. This has had a positive effect on me,someone who feels he is at rock bottom. Not something I would ever wish one anyone. Take care!

[@Crazybassable]

I really enjoyed your descriptions of sensory overwhelm and the difficulties you had remembering things and such. Me having ADHD (and I'm fairly certain some form of Autism), it was exceptionally validating hearing experience crossing that fence, so to say. I felt an easing of the pressure I've been putting on myself. Thank you so, so much for sharing 🥰 Much love

[@thezaftigwendy]

I DO have MS, and several other autoimmune diseases. Everything you said about the way people treat disabled folk is so on point.

[@rdklkje13]

Amazing video, thank you, So many comments in my head,; brain damage makes it very difficult to write them down. Maybe later. Much love to you ❤

[@LadyValkyri]

Thank you for sharing your thoughts and struggles. I have an invisible disability, a long term, chronic depression and along with that some memory problems from past ECT treatments, medications and several past domestic violence head traumas, sort of like "boxer's brain." It's hard when people expect me to behave in a "normal" way, like returning the emails or "Well, just get up and do the things... everyone else seems to manage them." People don't understand that I can't, because I look and sound like a typical 55 year old woman with no visible issues. I wish you all the very best in life, Simon. Hugs.

[@BLacheleFoley]

Thanks for making this video. My celiac-related symptoms started in my 20s, too. At that time, especially being female and from a family not enamored of doctors, there was little hope of me being diagnosed, despite occasional and feeble attempts at seeing doctors. The symptoms became progressively worse. It was hell, for decades. I figured it out by accident. To be honest, I think the symptoms started much earlier, but they weren't recognized. I was skinny as hell and relatively weak. But, that was fashionable and I was pretty, so no one thought anything of it. I'm speaking here of the classic symptom "not thriving". Until I was nearing 30, I had not understood how someone could simply be unable to do normal, boring things. I learned many ways that can happen.

[@m0L3ify]

I have Narcolepsy secondary to Celiac Disease, so I can totally relate to this. It took 8 years to figure it out. I still have Narcolepsy symptoms even while gluten free, but they're minimal so long as I avoid gluten. Thankfully, I don't even have to take medication anymore. I use trekking poles when I'm out walking because even though I'm usually feeling ok, certain environmental exposures can trigger my Cataplexy and partially paralyze my right leg for awhile. The poles give me stability so that it's not as difficult to walk. I also know the pain of crushing exhaustion all too well. When it's time to go to bed, IT'S TIME TO GO TO BED. Sometimes I can barely walk to the bedroom if I'm too tired because I'm not getting enough sleep at night. Sleep attacks wait for no one. Exercise also makes it worse for a day, which makes regular exercise frustrating. I try tho.

[@OdditiesandRarities]

Thankyou for making this simon, I really appreciate you sharing your thoughts I feel less alone in having similar thoughts and experiences. Your channel has always been a source of comfort for me.

[@garl7927]

Hi Simon, I'm sorry for your loss and your pains, just wanted to say I really care about you and wish you the best for the future

[@g.m.9180]

I'm glad that you know what you have, I can't imagine how scary it must have been to have these symptoms without knowing why

[@Leofwine]

I've been following Simon's channel for quite some time now. For now, I want to say: My condolences on losing your father - both your parents, really. I hope you have a strong support network that helps you with the grief. I couldn't imagine going through that (even though I know that I will have to face the death of my own parents, just like everyone of us). At least there's some light regarding the symptoms you had to suffer through, if I may add something vaguely positive. Let me wish you, in Old English: Wes þú hál - be well.

[@stephanieparker1250]

Heartbreaking to hear of your struggles with this, thankfully sounds like your doctors are on the right track. ❤ I’m sorry about your dad and your mom, that’s a very young age to deal with so much.

[@RheaDawnLanguage]

EDIT 4: thank you so much for making this video. as i wrote below, it ended up resonating with me in a lot of ways (delusion, derealisation, overstimulation, sensory issues, brain fog, death) presentation looking drastically different this video, cool to see the channel evolving in real time! i'm very interested to hear about this topic, as someone with a dissociative disorder i'm in the middle of getting diagnosed. a sort of dissociative disorder to explain my mental worldview has only recently come to light as a possibility, because i only recently started to question whether my experience of the world was "normal". i've always suffered from memory loss and derealisation, and feeling like my personality changed a lot from hour to hour and context to context, but only as i've grown up have i started to understand that the wibbly wobbly way i perceive things is non-standard in some way. the question of how much one's mental experience of the world lines up with others is fascinating to me, especially right now as i'm working out my own mind's differences. EDIT: getting into the video, as someone with autism and ADHD some of your experiences do mirror my daily life quite well. not being able to correctly process complex sound means that I am often practically unable to engage in conversation in places like restaurants, where unfortunately most gathos happen. i also struggle with brain fog at times due to the aforementioned dissociation and memory loss: i will be halfway through an argument and suddenly dissociate, change "states-of-mind", and realise i'm not entirely certain what I'm on about anymore. combined with ADHD's rambliness, it means that recording unscripted videos is sometimes impossible. EDIT 2: I've also always suffered from paranoid delusions similar to what you describe from OCD, which was worst in my childhood when my grip on reality wasn't as strong as it is now. I developed Capgras delusion at age 7, and a lot of the time my delusions were worsened by derealisation, whereby my loose connection to reality weakened my ability to use its natural laws to reason against my delusions. your description of sensing that reality wasn't what you thought it was absolutely sounds like what i've suffered from. EDIT 3: As someone who has always suffered from a profound existential anxiety of dying, your thoughts and perspective on it have comforted me in a way nothing else has.

[@horseenthusiast9903]

Oh hey, I also struggle with sensory overload from noise. I've probably got ADHD (I'm trying to get an evaluation after my first attempt was brushed off, because I've checked a lot of the symptom boxes off since childhood and some of them are getting more intense). It's usually something I can work around, but I hate when it's all too much and I just start stuttering or literally just going "Blegh" because I'm so overwhelmed by noise that I've lost what I was saying and forgotten how my body produces speech. It makes me want to cry whenever that happens. Happened to me the other day in the car and I'm still a little upset about it.

[@tracik1277]

Just want to say I relate to parts of both your above comments.

[@erinmac4750]

It sounds us neurodivergents are not as alone as we may feel we are. Simon's candid video here has brought out an amazingly unified voice of support and acceptance, as well as empathy from similar life experiences. This may be para social, but it's bringing people together sharing thoughts, understanding and information. Thank you all, and especially Simon!

[@psychoprosthetic]

Sorry to hear o the difficult time you have been having. Very generous of you to share like this.

[@jamesfforthemasses]

Your videos are always fascinating, and this one is rather brave.

[@stormx2827]

How on earth do you maintain one of the best youtube channels, study for a masters, AND deal with all of this stuff?

[@7177YT]

This!

[@greensleevez]

@@7177YT People have hidden reserves they do not know they have until those are being called upon.

[@I_am_that_one_guy]

Rapid automatic cognitive processing?

[@bob___]

My daughter had seizures when she was 3-4 years old, and it turned out that the seizures were caused by celiac disease and its effect on the calcium levels in the brain. Various specialists didn't know what to do, and they resisted the idea that it might be celiac because it's classified as a gastrointestinal condition and seizures are a neurological symptom. But my wife insisted on getting complete testing for celiac disease, and my daughter had it. Changing to a gluten-free diet completely eliminated the seizures. This would not have been achieved, but for one specialist in celiac disease who was aware of the potential for neurological symptoms.

[@WatermelonEnthusiast9]

Not understanding what people are saying for a minute before finally understanding or forgetting what a conversation is about midway through, these things are scarily relatable for me. My balance isn't even close to as bad as you are describing as yours being but I do bump into things sometimes, which is normal but people also have made comments about me being clumsy. Overall some of things are relatable enough to concern me. Edit: You named Autism and there is a family history of it so maybe it's just that.

[@bl03bird]

Deepest sympathy on your Dad's passing. Coeliac can be difficult to diagnose, I'm so sorry to hear of all the terrible and frightening symptoms you have had. Sending you support, take care.

[@mgsxx]

Please be well. The world would be a worse place without you and people like you.

[@Roughling]

I'm sorry for your loss and I don't really have a single comment-ready thing phrased outblike that, but: thank you for making this video. I will think about this for a long time probably

[@SDOtunes]

Fellow coeliac's patient here, I feel you, it can really do a number on your brain. I was having brain fog and restless legs due to the malnutrition before diagnosis, both went away after the initial healing phase and changing my diet, luckily. Wishing you a speedy recovery!

[@Fantosofthelight]

I’m sorry you went through that, it sounds absolutely terrifying. Glad you’re on the road to recovery, and thanks for all the content you produce.

[@andrewbaker8373]

You are very talented and insightful. This can/gives extra burdens on our challenges. Thank you Simon for all you do and are.

[@bellaluce7088]

I had a deficient thiamine/B1 test result that was overlooked by multiple doctors even as I was reporting extreme memory loss and fatigue. 🥺 It's so important to persist in advocating for yourself when you know something isn't right. So glad you were believed about your symptoms and the B9 deficiency discovered and followed up for celiac. Condolences on all your losses, and best wishes for your health and happiness. ❤

[@Muzer0]

Fantastic video, Simon. I think you're one of few people who can talk about a topic like this so soberly, insightfully, and clearly-presented. The thing that really connected with me was that the sound of your dad trying to explain his hallucinations sounds like me when I've had a dream and try and explain something from it, only I don't realise it was a dream at the time, I'm explaining it like it's something that really happened to me, and you get that feeling of immense confusion when something you were stating as plain fact suddenly doesn't make any sense. Usually I then recognise it as a dream but sometimes if it happened a long time ago I won't even consciously remember and I'll be left to wonder if my brain has so warped a memory that it is now as nonsensical as a dream, or if I did dream it after all, or if my brain just made it up out of whole cloth.

[@ArturoStojanoff]

I'm sorry for your loss.

[@OffRampTourist]

Thank you for sharing. I've read some of the comments and most of what I feel compelled to say has already been expressed beautifully, so I'll just add that your profound and confusing emotional and mental experiences related to a dietary issue may mirror something any of us have seen in a family member or coworker, or in our own interior experience. Let's please all be kind and patient with others who may be going through something like this and just lost in a process they have no comprehension of or explanation for. I am saving this video to share if in the future I suspect that someone I know may need it. Wishing you a full recovery and the best in all your future endeavors.

[@TovarichBramble]

Thank you for sharing this. My mama passed when I was 18 and she also had a matter of fact attitude to death which I’ve also inherited but as you say, others don’t tend to share that view. I’m sorry for your loss but am glad you were there to spend time with him at that point. You obviously had a close bond which is always lovely to hear of in modern society. I sincerely hope once everything is confirmed by the specialist and dr that your treatment can begin more fully and you start blossoming again

[@PetroglyphWatch]

I'm glad to hear that you are on the path to recovery. I was diagnosed with celiac disease in late 2004 and have been gluten free since, including 18 month deployment with the US Army. My wife also has celiac with the neuropathic symptoms. Thanks for your great videos - they helped me decide to generate my own content.

[@Gizathecat2]

Wow Simon, you’ve been through hell and back and talk about it! I admire your strength and courage for sharing your experiences- good or bad. Many hugs 😊😊

[@LeaAddams]

23:30 - I'll second that. As an autist and ADHD'er, so much of what you're describing as regards cognitive and sensory stuff is really close to the way I experience the world, and I've been thinking that the whole way through the video so far. EDIT: Well, fuck. Maybe this is weird from an internet rando, but-I'm so sorry to hear about your dad, and all the awful things that have happened. More than that, thank you so, so much for sharing so kindly and vulnerably. I'll not unload my own baggage, but for what it's worth (and as much as I realise KZbin is inherently parasocial), I really felt the connection you were talking about offering. So again, thank you, and I really hope that nothing but bright things come your way.

[@stephanieparker1250]

Yep, same here. Neurodivergent and ADHD. It’s exhausting and makes symptoms worse if I get tired or overwhelmed.

[@tracik1277]

I wish I could triple or quadruple like this comment.

[@mrguysnailz4907]

I'm in the same boat. Sadly I live with my 68 year old mum who has untreated BPD - I get overwhelmed by her soliloquies on a daily basis. Need to sort my things out, finish my master's and get a half decent job so I can move out.

[@dayalasingh5853]

19:18 if that isn't what living with a disability is like, I have chronic pain and it's difficult to explain to people just how painful something like shopping is for me because that's so far out of what they imagine as being painful, especially when I'm only 19 so experiencing any serious pain isn't really expected of me.

[@dayalasingh5853]

Continuing watching this and it continues to be relatable during the section about the anxiety surrounding the walking stick. My disability is technically visible in the sense that I wear foot braces that can be seen coming out of my shoes but most people aren't paying attention to shoes and if they are they're asking me what size feet I have, in fact only once has someone asked me "what's wrong with your feet" and they thought it was a cast. This makes using the blue seats (priority seating for the disabled, elderly and pregnant, or others who may need it) somewhat stressful because while I very much need to sit down on the subway, I look like a healthy young man who wouldn't need to sit down. Thank you for this video Simon, sorry to hear about the difficult things in your life but I hope things continue to improve 🙏🏽🙏🏽

[@carlamelton665]

Its difficult to describe why your shared thoughts help. But they do. Very real. Thank you. I hope things keep improving for you and things get easier.

[@Schizopantheist]

I am sorry to hear of your misfortune Simon, but glad that you made this video. I can relate to a lot of this. I think a lot of people have 'hidden issues', including me, and an unexpected video such as this can create feelings of solidarity and fellow feeling. My condolences. And I hope your health improves after eliminating gluten. I have found guided meditation (usually Buddhist), regular moderate exercise and comedy very helpful in the past for getting me out of dark places.

[@singingpuffin]

I am so sorry for all you have been going through. Stress and grief have huge physiological effects on us. I hope you will begin to feel some relief from the coeliac disease soon, and that will gradually relieve some of the pressure it must be putting on you. I so enjoy your thoughtful, gentle, calm presence, your fascinating scholarship, and your appreciation of nature. Sending you very best wishes and much gratitude for what you do and for sharing your struggles. Your thoughts on death make intuitive sense and resonate with me, and it is helpful to hear.

[@goodandgreen]

Thank you for making this video. Parental loss and cognitive difference are topics that this platform needs more in depth and diverse approaches to. This video is a gift to us who consider more options than typical.

[@potts995]

This video’s very interesting, and I think a lot of people who will lose a parent or experience cognitive issues themselves will relate to this. My dad had Parkinson’s disease and experienced hallucinations in his last year alive, particularly spiders. I think the fact that I was there might’ve helped him recognize that some of the things he was perceiving were hallucinations and that he wasn’t crazy for experiencing those, it’s just part of the process, albeit a strange one no doubt.

[@whitenoiseratio]

Sorry to hear about your experiences Simon. I could particularly relate to the feeling related to bereavement. I lost my mother when I was fairly young. I was pretty neurotic at times but when my Dad passed away I really swung towards the negative mindset. As a child in some ways it was easier to overcome. i hope you continue to move on with things. The very best of luck sir and thankyou for all of the informative content over the years.

[@KathleenStidham]

Thank you. The more we share about “hidden” and intermittent conditions the better the world will be. I hope you can be patient on days that are challenging and experience better health in the future. I use a wheelchair away from home and it allows me much better mobility while also alerting others to the fact that there really are some things I need help with. I am so very sorry for your loss of your parents at such a young age. ❤

[@pandorastokoe4201]

44:54 'The experience of dying isn't necessarily that different to the experience of living' That's actually quite beautiful. Thank you for sharing.

[@malicious-monkey2845]

One thing that opened up my eyes to this was learning in veterinary science that anesthesia and euthanasia are, more or less, the same experience for the animal, with the only real difference being what comes after

[@tllgestalt1942]

​@@malicious-monkey2845 The more I think about having gone under anaesthesia, the more horrifying it is, because in just seconds I was just "out". I didn't feel myself go under, and my body felt absolutely nothing during the time between that and waking up, unlike sleep where you can have dreams, sleeping in a wrong position, external sounds causing micro-interruptions and whatnot, there's no semblance of living, you're just gone like in death. I often scare myself existentially, asking what just about existing, initially it was about death and that after it I simply won't exist anymore, but then that lead me down to thinking to before my birth and I didn't exist before myself. It's less death that frightens me, but no longer "existing" as myself, same reason why complete amnesia scares me as well, the loss of my memories may as well be the loss of my existence at this moment.

[@carol5763]

Thank you for making this video. It helps to know how other humans cope with difficult situations and want you to know I really enjoy all of your content--linguistics, neurocognitive topics, and personal stuff. They are all valuable. I am sorry you've lost your father.

[@azredhead9666]

Oh my goodness! Simon, this sounds so SCARY and FRUSTRATING! I can not begin to imagine having to deal with this. But, it sounds like your doctors are getting it figured out and I hope you are feeling much better very soon! Hugs to you. ☮

[@idliketobeagummybear]

the notion of not being “ill/disabled enough” is infuriating, especially in the UK where we see a direct correlation between lack of NHS funding and dismissal of symptoms impacting daily life in very real ways. the lack of consistent medical and social support for sure impacts public perspective on disability imo, re: notions of ‘faking’ and having to overcompensate. as always, you guys are in my thoughts. you’re fucking troopers in the least condescending way possible. all the best -leo

[@francisdec1615]

People in the UK were stupid enough to vote for the evil Thatcher witch for many years.

[@davidhukill7441]

I have appreciated your channel for a while, but I especially appreciated this video. Your comments on death, later in the video, resonated with me. My father passed recently, and my family had a similar experience of dread; dread of finding him in his chair, or on the floor, or really anywhere else. He also struggled with alcohol, along with other unrelated medical issues, and he had been on the brink of death a few times. He had similar premonitions and hallucinations, which he also tried to explain - almost as if they had been lucid dreams, I suppose. In any case, or I suppose at least in my case, his passing was just as you described - he was here, and then he wasn't, and it was less dramatic and dreadful than expected. We did find him, after all, but it was just another "stage in life" moment, as bad as it was. Anyway, thank you for posting this. Although I'm not exactly suffering over his death, I do take comfort in hearing about someone's similar experience, and your thoughts on the matter. Cheers.

[@sarahspero1355]

Hey, Simon, thank you so much for sharing what you've been though. Im so sorry for you losing your dad. The clear description of your experience and symptoms will undoubtedly help many people recognize potential physiological causes of some scary neurological symptoms. ❤

[@andynz7]

You describe these difficult experiences so eloquently. Thank you for sharing, it seems you're helping a lot of people out there.

[@7177YT]

Discovering the symptoms you describe would be terrifying to me. I know the sinking feeling when it becomes undeniable, something is seriously off and the rage/panic/dismay when your body or brain is failing you. Sorry for your loss, wishing you all the best, we're all rooting here for you! Cheers!

[@geekmuffin]

Simon, thank you very much for sharing all of this! I can personally relate to almost all of it, often even the specific details. Hearing your thoughts on these topics has indeed helped someone. I don't know how to express how much my first listen helped me, and it won't be my last. Your ability to be objective about these experiences is remarkable. I have struggled for years to describe many of them in ways that would make sense to others. Both your objectivity and your command of the language made each of them crystal clear. And that's despite the fact that you're still experiencing the effects of the gluten at this point. I could go on and on, but I'll stop here. I just wanted to say thank you. I think the causes are different, but I deal with many of the same issues, both internal and external. Your video helped me to realize that it's not such a unique and discouraging situation. And maybe I don't need to mask all of these things as much as I do. I'm very sorry for your losses, and I wish you the best possible outcome. I can't wait to see how you feel after you successfully address the gluten effects!

[@Clodhopping]

Simon, my heart goes out to you but also my admiration. I lost my parents in close succession in late 2020 and early 2021. Losing that root was so difficult. I felt I'd lost a spiritual/emotional sense of 'home'. Despite uour burdens you're giving back to thousands of people. Your videos on language, dialects and accents have helped me through many empty times. They're thought provoking, fascinating and your delivery is calm and comforting. Thank you ❤

[@marianenasheva5378]

Sorry for your loss. You have had to face it way too early. I wish you strength and confidence. Our interactions with our own thoughts sometimes can be tough indeed. Thanks for being open on it. I believe many of us may feel less lonely.

[@davidbarrass]

I was diagnosed at 55, once I could finally go gluten free I realised so many things I'd been experiencing throughout my life were related to coeliac. My nutritional deficiency was iron, I was always anaemic and could never work out why. It sounds like I was lucky, your experience sounds horrendous. Keep strong, this period between initial diagnosis and the endoscopy is difficult, you know you can fix it but you're not allowed to. It does get better, I miss decent bread, but gluten free food is not bad, In fact I'd say gluten free batter is better. I'm so sorry to hear of your loss and hope talking about it helps, it helped me with my Mother's loss. The stress could have made the coeliac worse, my trigger for going full blown coeliac and final diagnosis was my son falling while ice climbing (he's recovered).

[@ixchelkali]

I've experienced almost all of those cognitive issues you described (except for the delusions) for the >20 years I've had myalgic encephalomyelitis (ME/cfs). I've had a lot of opportunities to observe subtle details, but you describe them better than I ever have. A major difference with ME/cfs cognitive issues is that they wax and wane depending on whether I exceed my energy limits, so I have ample opportunity to observe functioning with and without that impairment. But how well I know that feeling of trying to push your brain to function through the fog, like trying to push a big block of cement through treacle. It's exhausting. And the sensory overload of supermarkets! Even without other people, there are too many objects, and colors, and smells, and decisions, and noice. It's painful and overwhelming. I devote some of my time to disability awareness for "invisible" illnesses, and one thing I've noticed is that many, if not most, autoimmune diseases have similar cognitive issues, including brain fog and slow processing time. And now people with Long Covid are experiencing it. Watching your videos from the past several months, I had actually wondered if you had an autoimmune disorder, because your speech pattern had some tiny pauses that are common in patients when they have aphasia and/or attention deficits. I hear them in myself, too. I'm so glad you were able to identify the cause of your symptoms. Autoimmune disorders are notoriously difficult to diagnose. I hope you get your "official" diagnosis soon and can get off gluten and start healing you gut. I'm glad you can look forward to feeling better soon.

[@whispersosoftly5753]

I also have celiac disease, and the symptoms you describe are almost exactly like what I've experienced. I'm sorry you were so ill for so long