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I have cognitive dysfunction (Brain Fog) [CC]
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- เผยแพร่เมื่อ 21 พ.ค. 2018
- While having a mild brain fog episode I decided to try to talk about brain fog, what it is, how it's been affecting my life, and working through my internalized ableism (and where it comes from). Something I didn't really talk about was different coping mechanisms (like rewinding content, using audio descriptions AND captions when watching films, etc) so I'd love to hear yours! Leave them in the comments below!
EDIT: For those who may not know, neurodivergence is not the same thing as cognitive impairment, hence I said I've been neurodivergent and was already bullied for that, cognitive impairment relates to the same ableism that made my neurodivergence a target, so they are related in that way.
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Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.
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The thing that happens to me the most when I'm having the hardest time with brain fog is saying the wrong word. It's like a crappy game of word association. The word that comes out will usually be somehow vaguely related to what I'm trying to say - maybe it will sound similar, start with the same letter, have a similar rhythm, have a similar use, or sometimes the relationship will not make sense to anyone but me. I often say "recycle" when I mean "laundry". I end up having to gesture or point or keep explaining until the person understands what I really mean. 80% of the time I'm aware that it's the wrong word - I just can't remember the right one. My speech also gets much slower when I'm at my worst.
Recycle and laundry are the exact kind of placeholder nouns I mix up, myself. It's like I reached into the right bag of words but pulled out the wrong word. Under that is only knowing colors. I need the blue thing please. Under that? "Crap, I can't talk right. I'd better be quiet and try to do everything by myself."
Guys how are you now? I’m only 24 and I have memory issues. I forget simple things like names, words, what I wanted to say and it’s difficult to communicate. It scares me I thought I had a brain tumor or dementia but then I had an MRI and it showed no issues. What do I do? How did you cure brain fog?
Omg thank you I've never been able to explain it. The only way I've been able to explain it is like calling a mime a clown bc I was watching a yt video that was talking about childhood photos and the background behind it and I was like okay I can use this analogy to help communicate my experience but I wouldn't have been able to do that without coming across that video. It's like im using something close but it isn't it at all and it's extremely complicated when it comes to internal experiences bc there isn't a right word or right way to describe it like it doesn't have a proper name its a description so I feel even more hopeless when trying to describe it especially when I'm misinterpreted and misunderstood by everyone I talk to.
@@MetalDetectingRussiahow are you now 😊
I hate how brain fog makes you feel. I feel lost. It's scary. It's like I've woken up from sleeping for years and don't have a clue what has happened. I forget the most basic things. Thank you for sharing your experience with brain fog. It's nice to know other people in a similar situation.
When I got sick I had to give a pet up for adoption. A few years later, I couldn't remember him dying, or leaving, or where he went. I asked a friend who reminded me that I'd given him to a rescue, and after some thought it sounded familiar and started coming back to me. I. Lost. It. I felt like I had finally really lost my mind, like there's no going back. It's.. scary.
Guys how are you now? I’m only 24 and I have memory issues. I forget simple things like names, words, what I wanted to say and it’s difficult to communicate. It scares me I thought I had a brain tumor or dementia but then I had an MRI and it showed no issues. What do I do? How did you cure brain fog?
@ThisIsMyRealName Thank you. Yes I've been thinking of taking vitamin B. I should start soon.I hope you feel better :)
Honestly I'm so grateful you and Jessica are talking about this because I've been struggling with the exact same thing. It used to be manageable but it's been getting worse and worse. As someone who loves reading but can't read anything longer than a paragraph, and someone who loves podcasts but can't follow them for longer than ten minutes, and someone who is intensely creative but can't create, and someone who can't verbally advocate for themself in order to accurately communicate what I'm struggling with, it's put me in a scary and frustrating situation.
@self inversion You put that really well and I appreciate it. I started having cognitive and physical decline at the same time, and don't know who I am anymore. "What do you do for fun? What are your hobbies? What are you good at?" OH GOD
I've never been able to verbally advocate for myself and I still don't know why. I get extremely and quickly burnt out from answering questions and having to communicate my internal experiences even with help but I never have any help. This problem is so devastating to me paired with my other issues (borderlinepd, major depression, gad, ptsd, cognitive communication disorder, possibly autism and possibly an autoimmune disease or fibromyalgia and more personal issues) im getting deeply suicidal again. I barely survived the last time I got like this. I have had these periods in my life where I was so depressed and suicidal my whole life since I was a child and the older I get the harder they are to get through bc I understand stuff more. Ik I'm not using the right words for that but I can't say it any better atm. Im gonna have to go inpatient soon at this rate. I have resources but I don't have any support with any of the things I need. I used to have my boyfriend but he's been incredibly hurtful lately and is struggling immensely himself. I'm losing hope and I can't advocate for myself. I feel like im screaming desperately for help but nothing is coming out of my mouth. Like I'm in a nightmare. I'm screaming and no one can hear me bc no sound is coming out of my mouth. I'm in hell. And there's nothing I can do. I'm doing all that I'm capable of. I don't even have the energy to throw a fit to get help. That never helps anything but at least someone will pay attention if I make it obvious enough. Even scream crying in my room all day long does nothing. No one cares until I make it inconvenient for them not to. And I don't have the emotional energy to do that. It's not something I even want to do. But no one pays attention. No one hears me. No matter how loud I yell or how hard I cry, no one helps me. I can't do it myself. I can't do any more heavy lifting. I feel like im moving a mountain by myself by myself.
@@rebeccasmith4057 hello Rebecca. Just saying hello. I hope that you have sources of help. I’m in the auK and have found the samaritans helpful as a number I can ring and just talk all the words that are hurting me until I run out of words. I am pretty brain foggy at present so won’t try to send you logical streams if words to help you. But the only comfort I have found is just to let those blank moments be. I almost treat them as a sort if meditation. An acceptance that this moment just is. I am just here, now. And no more than that. I find that takes me to a place of calm and tranquility. Sending hugs xx
the idea that lingers in your subconscious that everything that you did or said was not enough, that it was not your 100%
Woooow I took a test that said I have cognitive issues. And I explain it as brain fog. This is crazy because i was told I had a learning disabilities/ADD. Now it came out it’s just cognitive issues. It sucks because i want to learn a second language but it’s been very difficult to the point I want to cry. I also have a problem with eye contact and think people think I’m slow sometimes. Even when I speak I forgot words and stumble. Anyway, as I’ve gotten older it’s gotten worse. My husband makes fun of me for it. Was telling him about a tutor I had and realized I was dog brained 90% of the time I was their. He was getting mad because i was reading but wasn’t comprehending they weren’t registering.
I want to cry because everything you’re explaining is me I thought I was the only one with these issues.
Wow my husband always says I say think but I don’t remember.
Woooooow this is wild I can’t believe I’m not alone. I thought I was crazy my mom would call me slow and many other names I’m not going to say (she was mean nasty and narcissistic)
Also my cognitive problems gives me social anxiety.
I remember being 14 taking a nap and waking up and not remembering anything my name my family’s name friends,school,teachers, phone numbers
i relate so hard, especially to the problems with names and people thinking i'm lying. people (especially my parents) keep telling me that im lying/dont care and im not really forgetting, but i know i am and it so frustrating.
I swear I remember things almost in reverse order of importance, it's so frustrating and people get so upset.
I always knew i had brain fog with my fibromyalgia diagnosis but never before did i realize just how many things in my life could be examples of these episodes. Reading without registering, memory loss, loss of words as I speak, forgetting people and places and things, struggling to focus on people (or shows or anything that involves my attention without distraction or lapse of my mind) and losing things i had in my hands literally five seconds before etc
God damn, i used to be so sharp mentally - i thrived in school. It's all ground down to nothing.
Thank you for putting yourself out on the internet with your videos Annie - when medical professionals fail, information and sharing of experiences is so freaking vital to this community.
edit: also apparently writing a succinct comment now takes me a half hour and three drafts - excuse the inevitable mistakes lol
as an add-on that i just thought of - does anyone struggle with reading out loud? Even as a kid i would add in extra words to existing texts, edit sentences and replace words with similar sounding ones - all in the milliseconds that it took to see a word in a sentence and read it out loud. People used to think it was 'cool' - now looking back i have a sneaking suspicion it was one of those 'wait no one else does this?' indicators that everyone here is probably familiar with.
Jess689 do you also suffer from dp?
Or sometimes forgetting what you read just seconds before and therefore forgetting where you are in the text and having to stop and skim through it to see if you can pick up where you left off.
My prayers are with you.
Guys how are you now? I’m only 24 and I have memory issues. I forget simple things like names, words, what I wanted to say and it’s difficult to communicate. It scares me I thought I had a brain tumor or dementia but then I had an MRI and it showed no issues. What do I do? How did you cure brain fog?? What is helping you?
I’m Dyspraxic and Autistic and I have brain fog. I relate to so much to this, I’m having a particularly bad day of it today. I’m actually getting emotional listening to you because of how much this all resonates with me
I am also Dyspraxic and Autistic and feel the same, the doctors would consider me as "high functioning"-a term I despise.
With a combo of severe social anxiety, cognitive impairment and chronic pain, I can totally understand where you're coming from. I also have a lot of anxiety around communicating 'effectively'.
Me too! The constant pain is bad enough, but now with the cognitive impairment, I be d to isolate so very much.
I deal with a lot of brain fog too. Some days are more heavily impacted than others, but for example it took me over an hour just to complete watching this video & typing this comment. On days (like today) where everything feels foggy & confusing, I just accept that things will get accomplished eventually and that life is not a race.
I'm still going to accomplish my goals, even if I have to adjust the rate at which they get accomplished.
The number one thing that I do to cope is to speak softly and repetitively to remind myself what I'm doing. If I'm walking from my bedroom into my kitchen to make a sandwich, I might say "I'm on my way to make a sandwich" over and over again. That way, (hopefully) I won't lose the thought before I get there, but if I do I can sometimes ask the folx around me who may have heard me say I was making a sandwich.
It's maybe not the most practical approach in public because some people perceive talking to yourself as worrisome or threatening. I don't understand that, but I've been interrogated about talking to myself when I was simply trying to do math in my head or remember my shopping list. All that aside, it can at least be a helpful tool at home.
I wish you peace and encouragement on your journey to self-acceptance & over coming internalized stigma or ableism. I applaud you for living as your best, most authentic self on the internet despite the haters! I wish we lived in a world where we didn't have to defend ourselves over everything too, but I have even more respect for you for putting yourself out there despite the ignorant judgements that some people may pass.
Being bullied for having difficulties socializing with other people is something I can relate to. For years I wasn't able to tell if someone was being kind to me because they meant it or just because they were making fun of me. It's one of the most frustrating things I've ever experienced. So I built a wall around me to avoid being treated nicely to my face and mocked of behind my back.
Thank you for your honesty, and for being and inspiration. It may sound ableist, but people like you and Jessica were my inspiration, the people I look up to when trying to give visibility to EDS in the Spanish-speaking community.
Thank you very much for your honesty, it helps to destigmatize disability. Being ill or disabled is not bad, and isn't something we should keep to ourselves. We need to share it to make it more understandable to non-disable people, and to avoid ableism.
La Zebra Humana to this day if I hear people laughing, I freeze up. I had the bullying where people act nice to you to lull you into security. I still have trust issues because of this.
Many of these hit close to home. Thank you for speaking about this. Hearing your experience puts a lot of things into context...
Thank you so much for this honest video!
I have made very similar experiences, being mentally ill since childhood and getting mercilessly bullied for it.
And now that my physical illness get worse and worse i feel like my brain is gone and there's just a soggy foggy sponge left.
I went from reading 100 books a year to... zero. Just can't concentrate, like you said i read the words but there is no sense reaching my brain.
I remember tiny unimportant details, but forget big important things and tasks to do.
Thank you so much for this video!
Noticing decreased ability in masking because of chronic illness isolation is a thing I have very much found.
Thank you for talking about this and it crossing over with brain for, especially because hard trauma stuff working through.
I really struggle with focus and ability to think clearly or make any kind of sense. That I really call brain fog for me to.
Processing stuff auditory or visually is overwhelmingly hard especially when one wants to.
I also have cognitive impairment. I also really have a hard time reading. I can’t comprehend anything I read. I often have to read the same sentence again and again to understand it. I always had to have tests read to me. And I will forget my words too and I have episodes where I will dissociate. It’s awful. I love that you made a video on this subject! I can relate to most of this!; Hugs!!
I was called stupid, too, alongside being praised for my intelligence (which makes no sense); told I had no common sense, asked “What’s wrong with your brain?” told “You’re too sensitive,” and bullied and emotionally abused. I have traits of autism though I don’t know if I am. It runs in my family, and I display many of the traits women do because of the erroneous belief that it’s a “boy’s condition.” I’m okay at eye contact so long as I’m not being emotional or am distressed. I didn’t realize that some of my behavior/movements could be stims. Part of me wants to see if that is my diagnoses; another wonders if I just want the validation.
I'll definitely have this in my mind when I'm meeting new people, you never know what the person is going through. Thank you for sharing, you're awesome 💙🐦
I can definitely relate to a lot of this - forgetting names and interactions (I too have forgotten people I've met on multiple occasions), and processing difficulties in particular. (Also other stuff but my memory's too short right now to remember the specific points, but I'm fairly sure it was most of them....) It's led to me developing a bit of an airhead persona around my friends and casual acquaintances, like "haha isn't it cute how I can't remember basic things" because I don't want to admit how much I'm struggling.
Also, re: the use of audio description and subtitles at the same time - I've started doing that recently as well! I can't stay focused on the screen for toffee, but I also have auditory processing issues. (Bonus points for constantly being told the names of characters - I really struggle to remember who's who, so having a voice tell me it's X walking into the room is fantastic.)
Anyway thank you so much for making this video!
It's the same with me! I make fun of myself for never remembering names or not remembering what someone had said just seconds before. But then they start making fun of me too and it makes me feel bad, but I don't know how to tell them to stop because that would be hypocritical of me.
Guys how are you now? I’m only 24 and I have memory issues. I forget simple things like names, words, what I wanted to say and it’s difficult to communicate. It scares me I thought I had a brain tumor or dementia but then I had an MRI and it showed no issues. What do I do? How did you cure brain fog?? What is helping you???
Thank you so much for this. I was placed on a vent a year ago ever since I woke up from my coma I've struggled with cognitive dysfunction. EVERYTHING you've described in this video is me and i cried watching this video because I felt relieved that someone knows how I feel someone gets it. My friends and family support me but that don't understand how much I struggle and mask
Whoa. When you mentioned remember names I literally thought to myself "I forget my best friend's name more often then I want to admit" and you do the same !! I can't even believe I'm not the only one. I suffer from a lot of your other symptoms too. Now I think I have it.
I have cognitive disorder as well and I've also had trauma in my life and I never really understood how to put it in words or explain how I feel at times. So your video has helped me . I want to say thank you so much for making this video. The biggest thing I have is going through life everyday like it's a dream. I guess that's why it's called brain fog bc your always in a dream alot. And my childhood trauma was my mom dying when I was nine and alot of the time I still feel like that kid which is bad bc I'm 27 years old. I do forget things alot and my dad tells me I'm lazy sometimes or that I don't care about things. And it makes your brain foggier when something goes bad in my life and I feel like I can't handle it. I've never been around someone who has brain fog. It would really help if I knew someone who did so we can talk.
Thank you so much for posting this! I always thought that I was lazy, or stupid, when I thought I couldn't retain information. I forget how old I am! Thank you for letting me know I'm not alone!
Honestly, thankyou for posting this, it makes me feel less alone I guess? Brain fog is one thing I don’t really discuss with people because I just find it uncomfortable to talk about (huge amount of internalised Ableism surrounding that here) x
"people can notice it a bit more"
I literally accidentally just yelled "YES!" just now because of this, and had to pause the video to write to say that I absolutely 100% get this and you are not alone.
Having watched the rest of the video now, I sadly don't have any coping mechanisms but I would like to thank you for sharing this. I have posted it on my facebook as a way to explain to my friends and family what its like to be inside my brain! I think the thing I find most disheartening is my problems with reading. I grew up loving reading, I was a book a day kid.. now, I can barely manage a short article.
Nattie B how are you now? I’m only 24 and I have memory issues. I forget simple things like names, words, what I wanted to say and it’s difficult to communicate. It scares me I thought I had a brain tumor or dementia but then I had an MRI and it showed no issues. What do I do? How did you cure brain fog?? What is helping you?
I'm only halfway in but thank you SO MUCH for not cutting out much from this. It really helps to see this from the outside and feels so deeply familiar because I'm constantly living it.
This is extremely helpful for me. Thank you.
This video is soooo helpful. I'm going to show my partner this so he can understand better. I have C-PTSD, depression, agoraphobia, and chronic illness (autoimmune disease, pain, narcolepsy...) Often I struggle with brain fog and emotional fatigue. A lot of what you described also fits dissociation. I tend to get brain fog and dissociate when I'm having anxiety, something triggers flashbacks or traumatic memories, or I'm having a flare-up with my pain or illness. I blank out, stare off into space, can't hear or process words, can't speak or move (sometimes this is due to cataplexy) and if I do speak or move I'll stutter, trip over my words, tremble, fumble and drop things, speak too slowly, get confused or lost, can't remember things, black out, explode at people with emotions etc. My family members and partner are usually patient with me but sometimes they get "tired of me" or say they "can't deal with me right now" and ask me "can't you just calm down?" or do things that escalate the situation. I wish I could explain that I'M tired of it. Like really, you think I want to deal with it?! Cause I don't have a choice! I don't do it on purpose. Thank you for this video.
“maybe it’s not about you” is generally good advice when dealing with people.
this was really interesting! thanks for sharing. 💙
yes, all of this. it's so so hard especially with other people. be kind to yourself. it's not your fault, you are enough.
Great video. I just got diagnosed with Mild Cognitive Impairment. You've describe most of what I go through for the past few years, even the way you speak (with pauses) I do the same. They attribute my diagnoses due to my hydrocephalus. I've never heard of MCI until I got diagnosed. Thank you for awareness.❤️🤗😁
Thank you for being brave enough to talk about your struggles with this. Mine has been getting suuuuuper bad as of late and it's so hard. I used to be a freaking teacher... and now I can't even help my 4th grade daughter do her homework. It absolutely is a frightening thing to go through and I can honestly say I relate to almost every single symptom you brought up. Gentle hugs and many spoons, my sweet friend. ~Janessa
I relate to so much of what you said, but every time I go to the doctor and explain all of the difficulties I have with memory, concentration, etc., they tell me there's nothing wrong with me or it's depression. I never experienced feelings of depression until I began having these issues, though, and none of the antidepressants or therapy I've tried over the past 12 years has made it any better. I don't know what to do. Life is so hard.
Yeah. Doctors are helpless in these regards. Symptoms may sound too diffuse to them, until they are also affected by it. Even so there could be so many reasons, etc. It might help you researching for Adhd. It often get confused with depression and includes a lot of the symptoms in this video. Just my two cents. All the best!
Thank you!
I use 'brain fog' for quite a while now. Mostly because I could have related to descriptions flowing through my Twitter TL.
When I clicked the Vid, I was concerned, that I use brain fog incorrect as I haven't informed much.
But as you go through your experiences, I can relate to very much of it. It's relieving.
Going out speaking about things that scare, that are internalized and uncertain isnt easy. So I want you to know, that It has helped me very much. To make sense about these episodes. And to be confident in my self-assessment.
I'm just beginning my diagnostic journey and I always used to give myself such a hard time for not being able to remember/focus on normal conversations, and for completely forgetting whole situations. Thank you for putting this out there, it feels really great to know that you're not crazy. You rock 😊
TheJeceda hi how are you now? I’m only 24 and I have memory issues. I forget simple things like names, words, what I wanted to say and it’s difficult to communicate. It scares me I thought I had a brain tumor or dementia but then I had an MRI and it showed no issues. What do I do? How did you cure brain fog?? What is helping you?
X12 RUS hey how are you now? Currently going through this? Please help
Thank you for sharing this! I felt so alone, although I've heard others experienced similar. It was only by witnessing it that I truly could believe.
How can people be so cruel... as if they had the insurance that they would never fall low once in their life. It could happen to anyone at any age. I personally started going through this. I'm in my twenties and in the recent years I have been consistently feeling things like what you described. I am taking antidepressants for 7 years now, and their long term side effects affected my cognitive abilities, especially speaking. I can't find the words anymore. I stop midway because I forget the beginning of what I said and the sequel to what I want to say. l feel like I am betrayed by my own self. Antidepressant also makes me constantly tired and sleepy a lot. A lot of sleep also makes my brain even more damaged. My faith in God is the only thing that still keeps me hopeful, that one day all of this will get better.
OMG. The Chalie Brown analogy is one I've used. X
most ironic and probably frustrating time for you to make this but very well illustrated of fog, bc this is how my brain sounds when tryin to like, work. i need to send this to people lmfao. (also watching this my foggy brain is totally here for it but adhd brain needs it on like 4x speed). ive had problems SO long w the memory and mini blackouts. gaslighting, forgetting your best friends or other important people. never remembering when you first met someone (or thinking the 5th meeting was the first). so often i just say "yeah i have a brain thing" because names and faces just slide off my brain lol. but i agree with most that part about not being able to articulate yourself well when thats supposed to be what you do bc I'm a communications major and sometimes i cant string a sentence together lol
Hi Annie, I cannot describe how grateful I am to have found your video. I am at this point of breaking down, because I have no idea of what exactly is wrong with me. I am chronically ill myself but there are certain things I experience which even my psychiatrists or gastroenterologists cannot explain. I stumbled upon your video today and god, never have I felt so heard. Ever. I suffer with everything you mentioned - from processing sounds and information to the entire brain fog to maintaining eye contact and struggling in social contexts. I cried watching your video because I never realised that I may be neurodivergent - like I'm 28 yrs old and this very important piece of puzzle may have been kept away from me for so long! Thank you so so much for sharing your experience. I'm so sorry for all that you've gone through. No one deserves it. Lots of love to you ❤
I'm glad you left this video uncut, my EDS/fibro fueled brain fog affects me very similarly. I also find when it gets bad that I have to have long pauses in my speech as well just to find my bearings. Its like I get lost up in there sometimes and everything is kind blurry.
I was diagnosed with cognitive impairment a few years ago and no one ever really told me (or my parents) anything about it other than a very bare-bones definition and that I could get extra time on exams in high school and university because of it. I learned more about it in the first few minutes of your video than any doctor told me...
The outbursts you talked about, the decaying ability to "mask" when not constantly doing it, forgetting things, not being able to understand words, blackouts I've experienced all of these and had no idea that was all connected to the cognitive impairment. the only thing I knew that was coming from that was the inability to concentrate on things, even things i'm interested in. thank you for making this video. it's comforting to know this is all normal parts of Brain fog.
Thank you for sharing this, including the part about the internalized ableism around it all. Relating really hard to most of this and sending loads of love and gratitude.
Watching this video gave me so so much comfort. I forget important things, conversations from a short time away, relatives names. And with my faceblindness that makes my life messy.
I have so much anxiety when forgetting things due to trauma and yet
Annie, you are awesome! Also, you are apparently a friend of my daughter's, from some years back, on Tumbler, before youtube, while you were both being diagnosed for EDS. She says Hi : ) We both really relate to this video, very, very much! Wishing you the best! Gentle hugs~
I needed to see this today!!
You have managed to sum up my entire relationship with my brain!
I have been experiencing "brain fog" for the last few months and have found it really hard to get across to the people around me the difference between "brain fog" and any number of situations which can give you the same type of symptoms.
I am at university and feel the symptoms have escalated over these past few months due to the constant focus on work, it's like the more new information that I put in my brain the more useful knowledge I lose!
I find myself forgetting basic words and when I speak my sentences become staggered as I forget what I'm trying to say. My short term memory/concentration is awful too meaning I'll often forget what people have said in a long story and end up very lost!
It got me down at the beginning as I constantly felt like I couldn't keep up and really input in the conversations going on around me because my brain would have to work double time to understand!
Text to speech software has become my best friend when reading and understanding is an issue. Audiobooks also take all the effort out of reading. Highly recommend!🙌🏼
I've learned to accept my "brain fog" as an extra perfect part of me! For me it presents when I have begun to overwork my brain and so now try to take it as a chance to practice self care to ensure I nurture my noggin...
Thank you!❤️
I can absolutely relate to the reading problem. I used to read a lot and now on a good day I can read a couple pages. I get stuck on one line repeating it over and over ,forgetting it every time. It's absolutely frustrating and it made it impossible for me to pass my exams. I hope I can get a little bit of my cognition back so I can someday get a degree. Many of the other things you talked about sounded very familiar too.
I can relate to the vast majority of this!! Like almost everything you said. I find it SO hard, if not impossible, to tease apart what’s trauma-related dissociation and what’s chronic illness brain fog. I used to be able to compensate for most difficulties and I still try to because I feel so much of that ableist pressure to do so, but honestly it’s so exhausting to pretend and I really wish I didn’t have to at all. I, too, used to feel (still but especially when my POTS was completely unmedicated) that I wasn’t getting enough blood flow to my brain- and every other organ, for that matter- either causing or contributing to cognitive issues, and wondering how permanent those “losses” might be.
Don’t just want to give her a huge hug.
I can so relate! You put words out there to describe the way I feel. Thank you.
I’m going through this and it is heartbreaking it literally tears me apart I struggle talking I barely can listen to this without forcing my brain to focus
Lyric TheBlood hey how are you now? I’m only 24 and I have memory issues. I forget simple things like names, words, what I wanted to say and it’s difficult to communicate. It scares me I thought I had a brain tumor or dementia but then I had an MRI and it showed no issues. What do I do? How did you cure brain fog?? What is helping you?
Hey I don't know if you'll see this but go to a neurologist and get their opinion on the matter. Also, ask them about the possibility of your symptoms being psychosomatic (for that you'd most likely have to see a neuropsychologist). Hope this helps.
*OMGOSH.... All I can say right now is I Love you & Appreciate your story. You're telling my story. I call it a disconnect & hitting a wall. Not up to writing more than that right now. Thank you. I'm getting worse. See.... I say No too when I feel I'm wrong. Seeing 4 Dr's right now one is Finally a neurologist. Going for MRI with the MRA. I've subbed & look forward to watching more of your videos. I need to feel connected to others that suffer.🙏🙏🙏*
Thank you for posting this and talking about it! I have Idiopathic Hypersomnia and have been dealing with more and more cognitive dysfunction. Being only 28, it is indeed very embarrassing. I also have Charcot-Marie-Tooth disease so I've dealt with plenty of ableism and embarrassment and have processed through most of it. But I've only been diagnosed with IH for two years now though I've showed symptoms since childhood, and now that my cognitive dysfunction is more noticeable, I do find myself battling more internalized ableism, as well.
Not sure if that made sense entirely lol but I say it to say that you, too, are not alone, and I applaud and admire you for being able to talk about it so publicly.
Thank you! This video helped me a lot. I have POTS/dysautonomia and my brain fog has recently gotten a lot worse. Not a lot of people talk about it so I just felt guilty and didn't know what to tell people. I tried to force myself to focus harder but I couldn't and it was so upsetting. Finding your channel has really helped me start to accept where I am at. I'm chronically ill and disabled and that's okay. It is just a part of who I am. I started showing my mom your videos and she says that seeing your videos helps her understand better what I'm going through. Sorry this is so long, I just really want to thank you for all these amazing videos.
I can relate to so many of these things and share so many of the same anxieties (especially others perceptions of me and the ableism both internal and external that comes with it). You definitely aren't alone in feeling this way. 💜 Thank you so much for sharing!!
Annie thanks for sharing your heart.we that suffer from cognitive disorders will all get through this together,, one day at a time....bless you
I just mentioned it on Twitter, but to share here too - I can completely relate to all of this, so thanks for sharing it and putting yourself out there for us all.
The most immediate example though of how it affects me is how I had to re-watch several portions of this video to retain even the most straight-forward things you were talking about because I would just "glaze over" - or maybe black-out as you describe it. 20 minutes is just really long for me to get it all... although it's a perfect length to cover what you wanted to say and to make the wise choice about not editing any of it out.
Girl... yes. Yes, yes, yes. Fibrogirl here... I get you. I really do. Bring awareness of this to the MASSES! Brain fog is 85% of my 'you're too young for that' comments I get from the peanut gallery; the other 15% is references to my pain management and that I'm too young to experience constant bodily discomfort/pain. Thank you for sharing your perspective.
I can relate so much! I used to be able to completely mask any kinds of signs of my auditory processing disorder and other things, and I used to be able to concentrate for long times and remember things but over the last year or so it has gotten worse. My speech is bad, I often stutter and mess and mix up words and it can take me ages to even formulate a simple sentence and loads of people find it funny and take the piss which really doesn’t help. I can’t remember anything, I forget names of friends and I black out too which is probably one of the most frightening things when it happens cause I often don’t even know how long I’ve blacked out for or what I’ve done and it can be extremely confusing. It’s getting increasingly frustrating since I have a bunch of really important exams coming up and I have to remember so much, like I have to remember 20 ish equations for my physics test and it’s honestly impossible and even more frustrating with how not understanding people are. Thanks for the video, it makes me feel much less alone
I'm autistic and always struggled with my memory and concentration. I lose things all the time, forget to do things, etc. My father was and is extremely verbally abusive towards me for that. He made me feel so disgusting and like I couldn't do anything right.I never thought it could be brain fog. I just felt so broken because I couldn't keep track of things. My dad always made me feel bad because of that. Even as an adult it still bothers me. I'm going to try to work on accepting myself more. I'm glad to know that I'm not alone.
For the past 4-5 years, I have been experiencing all of this to a frequent and consistent degree especially the inattention and time blackouts. I have to be stimulated when I'm reading/listening, but it doesn't necessarily help me comprehend or retain focus better; I'm just not bored. I attribute it to my depressive disorder and anxiety disorders.
I also had a childhood of ableist violence while being undiagnosed. I was more so a quiet, reserved kid with obvious, unconventional behaviors, like, my collecting pictures of my favorite characters and organizing them into certain folders then carrying all those folders in my book bag to school with me everyday, or how when I got used to my schedules I struggled a lot when I had to adapt to something new (e.g somebody will suddenly talk to me and I'd momentarily get lost or be late to where I was going, there was something I needed to do else where that made me forget and consistently retrace my previous patterned schedule, etc). My struggle with attention was never this bad as a kid. It just started getting bad ever since I started HS lol But I think my inability to take a test has always been a thing. I can't give presentations without losing track of time, spacing my words, forgetting a word I know, speaking entirely too low (this is actually a big thing for me lol), and having the usual physiological anxiety symptoms.
Thank you for posting this video. I need to remember to not post about myself because I just go on endless rants, but also hearing someone share a lot of the same symptoms and experiences as me really helps me.
I can relate with most parts of ur video. I am struggling with my work coz of comprehension issues and am completely directionless
Omg, the thing about things not registering, specially the reading part, is so relatable. Thankfully it's not as bad anymore as it was when my fatigue was at it's worst. Same for the blackouts omg.
Woooow u hit home with me when u said POTS , ur a strong individual. I get that alot with the understanding ppl when they talk to you. 🙏🙏🙏 lots of love
Thank you for publishing this I have CP and before watching your video I had no idea that I had similar things happen to me throughout my life. I now have my family watch this so they can understand or at least try to. The verbal abuse is what I struggle with the most. And now that I understand brain fog. I try not to beat myself up and wonder why people treat me that way because of my brain fog. I have to remember their own struggles as well and not be so harsh thinking towards them if that makes sense. And hope that one day they come around. Though I am not sure I’ll ever get I’m sorry for treating you that way because it’s seeing as weak if you apologize for past actions in my culture. I’ll be very happy If I can move forward and be happy but it still gonna be a long road but we’re making progress 🙂❤️
I’m still super conscious of telling people about my Auditory Processing Disorder where I lie and say that my ears are bad or that I can’t hear rather than explain that my brain can’t process what you’re saying. I’m afraid people will think I’m stupid so I don’t really tell people. I know I’m not and I shouldn’t be bothered by it but I was told as a kid that no one would be my friend if they knew.
I’m only saying this because I also get embarrassed when people start talking jibberish to me when I know that I should understand them and I keep asking them to repeat. Yeah.
Haven't finished the video yet, at the part where you talk about reading and holy moly I have the same issue.
I've never been diagnosed with anything so it's completely possible that this is completely unrelated but!
I'm an avid reader, but occasionally when I read it feels like I'm reading a list of vocabulary words instead of a sentence. Like I sound the words out, I can identify them and know their meaning, but the sentence doesn't make sense. It's like reading:
Brown helicopter right face equal. Instead of a sentence that actually flows and makes sense. Hopefully that makes sense.
I've also always had issues with making sentences when talking. I know what I want to say and then randomly a word grows wings and flies away and I'm stuck there like "wtheck! Come back!" 😐
Ur not alone I'm cognitively impaired also
People my age rarely bullied. Adults 30+ years older have bullied me more times than I can count. So I don't trust authority or boomers. My therapist is my age and so is my doctor because I just cry when I have to perform for someone older. Whether that's in the grocery store, at the doctor, with my in-laws, or for Social Security. I just can't handle judgements anymore because I've never been respected by anyone except people my age and younger. I love my generation and the kids today 💗 they're so sweet and understanding
Oh, man. Thank you for this. I forget that a lot of things I do that are "quirky" are actually my cognitive impairments acting up. It's so hard when so many people want to gaslight my experiences by saying things like "oh, everyone forgets things" and if I don't have a good therapist I tend to fall back into believing them. I've been having so many migraines lately and even deciding what to eat can send me info a total shutdown. I also have issues with comprehension like you've described here and I've never thought that it might be another symptom so I'm going to bring that up to my therapist and neurologist next time we talk.
Oh my god, deciding what food to eat is one of my worst blocks! I just won't eat all day because I can't cognitively make a decision. There is a lot that goes into those choices too, like, do I have the energy to prepare it? Will it make me feel good to eat? Is it healthy? Is it delicious? Is it what I want? HelloFresh has really helped me in that regard, just kind of choosing foods for me!
I know how hard this is to go through every day but I'm proud of you for being open about it. It will definitely help me explain to people what I'm going through, tahnk you for that
Thanks so much for this! I'm sharing with my students for the upcoming semester to help them figure out why I forget what I'm talking about all the time.
Thank you so much for posting this ❤ I have had cognitive problems my whole life and they have only gotten worse with age. Now i have fibromyalgia and my brain fog is so debilitating. So many parts of what you talked about i really related to. I have a really hard time with names and faces, my longterm memory in general is very poor and if you add disassociation on top of that its only worse. I always forget where i put things and i often pause or trail off while talking. I forget what i am saying midsentence a lot, especially where this is anything going on around me (noises, lights). I really appreciate you for posting this. Sending love and solidarity ❤
Thank you so much for sharing this. I also have EDS and POTS, so I also deal with brain fog, plus I'm autistic which creates extra difficulty with sound sensitivity, eye contact, and isolating what a person is saying from any background noise. Currently having a bad brain fog day so apologies if any of this is worded poorly or too bluntly. One thing that's helped me fight internalized ableism is focusing on the concept of "doing what I can with the mind and body that I have." Which is sometimes easier said than done, but focusing on that tends to help me be more accepting of myself and get frustrated less easily. All my diagnoses have helped with this because I can point to them and tell myself it's not my fault, I'm not lazy, I'm doing my best with what I have and that's what matters. Again easier said than done, some days, but repetition has helped.
As for coping mechanisms, when I'm especially sound sensitive I'll wear ear plugs or headphones. When I'm brainfoggy and having trouble processing what people say, on TV I'll turn on captions, and in real life I'll do everything I can to help focus my best on their words. This usually means looking at something other than their face, stimming by fidgeting with my hands or fiddling with something in my hands, plus heavy use of scripts. If I still miss what they said, I'll either bluff or ask them to repeat or rephrase what it is they just said. If I'm extremely brainfoggy or stressed then talking tends to take too much effort, so I have a couple cards I can show people that explain I'm brainfoggy and thank them for understanding. Also cards that request something like to please leave me alone, or I'm overheating (thanks, POTS) and need help to cool down. None of them are perfect solutions for me but they do make things a bit easier.
There are so many people I really do like, even for years, without ever fully getting their faces or names. Often the combination of location, voice, their style, and the way they talk to me, those will remind me that I'm talking to someone I know and like (even if not specifically which one). But.. I'm pretty sure most of them see me as someone who doesn't care enough to remember. :/
Thanks again, sorry for all the comments. This one hit home bad.
I do all these things and more and I wanted to mention that I will forget all context of a situation or conversation so that leads to me forgetting my own intentions when saying something and misunderstanding the person's intentions I'm communicating with. It's like as if im walking into someone else's conversation.
Thank you for this video. It is exactly what I needed to share to help people understand. I am going to feature you on my channel launch this weekend. Love and light and thanks again.
Stay strong girl....Prayers for you.
You are not alone. I also suffer from brain fog, and i have narcolepsy. It's been really hard coping with it and i feel alienated because of it. Anxiety and confusion makes it even worse because i'm always afraid of being missunderstand by others, as well as them missunderstanding me. Anyway, Thank you for being open and honest. Bringing awarness to those who may not understand how debilatating this is.
-Holly
How are you now 😊
@BEALWAYSHAPPY266 Namaste, I am still here and still optimistic. :)
@@Coyote.Spirit means you also have recalling memory problem 😩I also have brain fog from past 15 days its so hard 😫 😢 😭 to survive with it 😢
I am autistic and I have cognitive impairment due to an undiagnosed chronic illness. This resonates with me so much
Thank you so much. I've been bringing this up to my family and my doctor for about 6 years. On my own, I have found names for some of my symptoms. Nominal aphasia has been really embarrassing for me. I have a decent vocabulary, and I've always been "intelligent," but I cannot hold a conversation without stopping midsentence to say "I've lost the word. I'm sorry, my brain just broke." And I am hopeless at remembering names or recognizing people in different circumstances.
Especially at work, I catch myself headed somewhere without knowing why, or I realize that the direction I was heading wasn't the one I intended. It's not unusual for me to stop walking and say, "This isn't where I'm meant to be."
I have had several episodes of confusion in which I'm not sure which of the things in the medicine cabinet I meant to put on my toothbrush, from acne spot treatment to frizz control.
While driving, I frequently come back to myself not knowing how I've gotten as far as I have, often not recognizing where I am right away even though I have driven the same route every day. I have a little burst of panic trying to figure out where I am and how I got there, only to realize that I'm on my normal route home or to work, just as I was meant to be.
I only recently found out that I am neurodivergent, and it made so many things make sense to me. Now I'm wondering if my cognitive impairment is related to my JHS or my neurodivergence.
The worst thing about all of it is that even though my husband is the one I cry to about my fears regarding dementia or brain damage, his reaction when he sees me doing something that doesn't make sense or when I accidentally use a wrong word, still thinking I said the word I had scripted, is to laugh at me and make me feel stupid. You're right: it's not a very likable word.
I can relate to this as an Autistic person, some thing are going to be different, some will be the same, my advice would be to keep on being honest about your neurodivergence, my expirence of trying to hide my Autism is very bad because, it made me very tired, no where near a bad as you have with chronic illness of course, it also caused the bad parts such as hitting and biting myself to be worse because I had to bottle it all up, in other words avoiding stims like hand flapping and swaying when I needed them. You are NOT ugly or stupid you are an amazing person who makes informative and articulate videos and posts (apologies if that bit appears creepy). I also understand that neurodivergence is much harder for you as a woman of colour than it is for me as a white man. I hope what I have said is ok. In terms of coping mechanisms the best thing to do after a bad day is to stim somewhere you feel comfortable then eventually be able to do it as soon you need to, I would also advice indulging in things you love for me this would be car related stuff I spend ages watching motorsport, I also enjoy watch the cars go past my house, I like listening to my favourite music as well for me these are ladyhawke and Breaking Benjamin.
Thank you so much for this video. We will conquer this and overcome it.
Thanks for posting this. I have autism so I get a lot of brain fog. I'll be able to form sentences perfectly in my head, but the words won't come out of my mouth and I go mute, or the words come out jumbled. It's really embarrassing and I've been accused of being drunk or high. This happened once when a cop pulled me over for running a stop sign, and he thought I was drunk and made me take a sobriety test. It was really scary.
ME TOO ME TOO!!!
My life right here. Thank you so much for sharing your experience
She is me and I am her. Not too long ago I wad driving and I saw the light was green, but didnt know if I should go or not.forgetting where I am going even though I take the same rought everyday to and from work. And I have no thoughts. Thinking about why I'm thinking of nothing.😞 I accept it and trying to be healthy. Cant even read books or what a tv show anymore. I am honestly scared.
I love your videos! Thank you for making your captioning so awesome!!! You include everything, even the ums and I love it 💘💘💘
You are doing the best you can. I'm going through the same thing exactly. It's scary and frustrating
I have issues creating memories. For example, i am watching this video right now, but tomorrow may have no recollection of watching it. Because of this i write down everything because i'm terrified that I will lose memories and chunks of thought/my life experience...
You're not alone. I feel like I need to keep a journal but my sjogrens diseases cause joint pain so writing is difficult.everything she mention is me everyday. I have no thoughts My mind is always blank like literally I'm think of why I'm Thinking of nothing. My roommate now is someone ive been friend with since 2006 and I forgot the pass 10yrs of our friendship not only her but other people including family I don't remember them at all. I feel alone even though I have lots of close friend they just dont get it
Thanks for sharing your experience!
Can definitely relate to some of this, I'm also very conscious of my vocabulary and such. Although I don't have trouble expressing myself online, when I talk with people I have a tendency to sometimes mix up words, and pronounce words in unusual ways or change where I put the emphasis, and my grammar pedant dad would sometimes go out of his way to explain what I said wrong, even though I knew it had nothing to do with what I did or didn't know. Sometimes my brain just does unusual things is all. I don't have the same neurology and stuff as you, but I do still find brushing teeth, exercise, chores, cooking and concentrating on reading/planning exhausting. Afraid I don't have many coping mechanisms though :/
I can relate. I just took a neuro psychological exam about a month ago and I failed miserably.
You are amazing And telling my story!!!!!!! Thanks girl
I try to tell professionals and they all oh I forget it's normal your getting older is anther like no one believes me
Everything in this video is my ADHD without my medication ugggggghhhh. I can barely function.
Does medication remove the brain fog for you? And which med do u use?
Thank you so much for sharing! I know it must have been extremely hard. I found your video at 530 in the morning when I typed in a search "jobs for neurodivergent". I can't continue my current job because of severe physical health issues and covid, and I have to look into other options. Unfortunately, I'm kinda am back where I started at 19....much is limited as I have memory, brain fog issues, and get confused with a lot of information at once, I kinda "space out" (as I have been told) and I get overwhelmed and my brain kinda..."shuts down", I start to "doublespeak" "fumble words" and such, I have learned/forced ways to mask and navigate speaking to people, doing a task, learning information and such....but if I have an "off day" it''s super noticeable by clients and coworkers that I'm " A bit off". I don't have a diagnosis, I am only just learning at 36 that many adults have these issues and have found ways to cope and that really opens up a lot of hope to find a way.
I have these issues too. I have to write everything down because I Will Not remember it. If I want to focus on a video, I have to make it full screen because I won't be able to focus if I can see anything else. I still struggle with basic math (I can do it, but it can take a while).
I've spent a lot of years feeling like I'm stupid. Sometimes I feel like I can't learn- like I've hit my limit, I can't store any more information in my brain, or I'm just flat out too dumb. But I'm currently working to rid my mind of this train of thought. I don't want to become stagnant. I want to learn new things. And I can. Sometimes it feels like I can't learn because I don't remember information easily. But I can.
9:58 'Frequent' was the word you were looking for
I go through episodes of brain fog due to my undiagnosed chronic illness. I will get instances where I can't focus, where I will have a thought and instantly forget it, and where words won't make sense to me anymore. One time I was working on a lab report really late and it took me three hours instead of half an hour because I could not focus at all. I looked at the wrong data for half an hour and once I was looking at the right data words barely made sense anymore and then I was crying alone at 2 AM in my dorm's lounge out of sheer frustration and it sucked. Luckily my episodes of brian fog are fairly infrequent, but they're still a symptom I deal with and they're really scary.
u u r describing my cognitive difficulties.
I love you so much for making this video
I have fibro/etc but brainfog is so hard. I lose my words. I can't hear a convo in a crowd. Large warehouse type stores is where I blank out and lose time. So frustrating. Thank you for being real.
Sometimes I can't dial a phone. One time I couldn't make sense of the traffic lights. That was terrifying. I don't drive anymore. Our reasons for brainfog may be different but I totally understood what you were trying to say. Captions helped with my exhaustion, so thank you. Sending ND love ❤️