Yay Vlognukah! So many fab people! Thank you for the shout out lovely and for talking about the 'disabled person'/'person with disabilities' debate. I'm definitely in the disabled and proud camp! ❤
Jessica your channel has been my favourite RU-vid discovery of the year. Your videos are so interesting and have really made me think about things I’ve never even considered before. You and Claudia make a gorgeous couple too ❤️
So glad to found you through Hannah's channel Jessica. I'm now looking forward to checking out several more these other named dropped friends I honestly had no idea there was even a debated about being called disabled. I was diagnosed with Tourette Syndrome and OCD when I was 11 and I've never had the slightest problem without referring to myself as disabled, even if most of the time I'd just say I have a disability.
Right on, captions are so important. For people deaf/hard of hearing and people who don’t speak English fluently- but also for people with auditory processing disorder. I don’t have a diagnosis of this but I’m Autistic and sensory processing disorder comes along with it for me. The captions really help give an extra way we can process the content. Thank you so much Hannah! Loved this video
Yes!! I have ASD and captions are sooooo useful for me when i watch RU-vid videos!! Also: both invisible i and Connor Ward and really great youtubers that are autistic and do lots of fab stuff all about autism and i would highly reccomend them to anyone because its so important that we educate ourselves about all disabilities, especially those that are often 'invisible'!
It's even useful for people who don't have any disabilities at all! Sometimes you might not have your headphones on you, but still want to watch a video in public. Sometimes background noise, like a kettle boiling, can drown out your phone's speaker. Captions are always a plus! :)
Captions are also super helpful for a lot of people with AD(H)D for similar reasons! The combination of hearing the words and seeing them written does wonders for actually taking in whats being said!
I think we missed the opportunity for Hannakah Oh also I really appreciate the captions, it's always super useful if you don't have headphones and such :D
Happy Chanukah! This video is great!! I do have to say as a chronically ill/disabled person who’s done transcription and captioning work for Rev.com, the pay. is. atrocious. I would recommend hiring people directly. It will cost you the same amount but we get paid a more equitable wage since there’s no middle man. Especially since this is one of the only types of work I’m able to do and get hired for due to my illness (and ableist attitudes), it would be awesome if RU-vidrs and other content creators hired us directly.
Not actually a disability, but I struggled with anemia for a long time and just had no energy, so when I found medication that helped I just felt so awesome. I went on and told a friend: "Yesterday I had school, theatre practice, a piano lesson and could go watch a concert in the evening, and I wasn't even completely exhausted in the end!" She wasn't fazed at all and didn't get why I was excited, because that was just her normal.
I have a bunch of food intolerances/allergies and reading your comment I wanted to tell you, "no, you can say you have a disability if you want, because you do have an invisible disability." But then I remembered that I myself really struggle with this. Am I a part of the term disabled? Am I not? I don't have a visible disability, my disability affects lots of my life but I've adjusted and don't find it hard. I currently don't feel comfortable claiming even the title of invisible disability... Anyhow, sorry for the rambling! I'm glad you celebrated your energy even if your friends didn't get it!
@@evercuriousmichelle Thank you! As with most things, I feel like it's best to go with what makes you most comfortable. If something related to your health affects your daily life and it's something that is different to the general experience, I don't see why you shouldn't use the term.
@@JuMixBoox I feel that way as well. I've had severe depression and anxiety for a prolonged period of time (you can call it Dysthymia since it's been going on for over 10 years now) and when I started using the term disabled, it helped me, as I no longer felt the extreme shame of sitting in a disabled chair in public transport for example. Or asking for help when I can't dress myself in the morning because I'm already extremely tired by then. Or even telling teachers that I can't come to class because I have to take a nap or else I won't be able to do any work for a longer time than usual. Or not going to uni at all for several days even though presence is obligatory because I haven't been able to get up from my bed or stay awake for more than a couple hours. I try to manage my fatigue but sometimes it just takes over my life and if I have a severe episode, I just accept my fate and give my brain time to heal, as well as validating my disability as one instead of just an excuse because I literally would go in trances in which I won't be able to move for several minutes and lose sense of time as well as dissociating but I'll kicked my own ass even more by telling myself that I'm just acting and using my illness as an excuse. So the word kinda helped me mentally and physically and while I do get a lot of stares and even get shouted at when using stuff made for disabled people (which helps me do said stuff in lesser time and pain than it would usually) I kind of don't care and the emotional negativity I get from it is far less than I would if I don't use said thing at all. I don't tell people I'm disabled because there's already enough stigma about mental health and I don't need more people looking at me like I'm just making excuses to not do stuff and we don't have a disability program in my country so it's not like I'm gonna go and claim disability benefits or anything. But the word still helps. Sorry for the rambling.
@@hajarmdn4883 No need to be sorry! I know how good it can feel to let your feelings and experiences out. I am glad to hear you found strength in that word.
I have fibromyalgia which is a neurological condition that causes brain fog, fatigue, chronic pain and in some people digestive issues (thankfully I'm one of the lucky ones and don't have that) One way it affects my daily life is that I can't stand for very long. When I commute on the tram every morning I have to wear an "i'm disabled please give me your seat badge" but often, because people are constantly looking at their phones, people don't notice it so I have to ask people to move for me which is an awkward experience. If you're able bodied and especially if you are sat in a priority seat, it would be a massive help if, whenever people get on or off your bus, tram, tube or train, if you just look up and scan to make sure that there's no one who needs your seat. Don't just look for pregnant bellies, old people and walking sticks, look for badges too and don't just assume that because someone is young that they don't need a seat
That badge is such a cool thing! I don't go to London much because I also have fibro+CFS and it is an absolute TOLL travelling - how do you apply for it? Do I need to live in London?
I have fibro too along with a few other conditions and using the bus is a nightmare! Even when I'm using sticks I've been harassed for sitting in the 'disabled and elderly' seats. Usually because I apparently look too young, as if that means more than my sticks?
Totally get the bus thing. I get dirty looks too. I feel a sense of satisfaction when I get up and they realise I've been sitting on a special cushion. Same with toilets. Just because I am 26 doesn't mean I don't have a need for a disabled toilet I would happily put my waste in a sanitary bin if it would fit (without spilling contents everywhere).
I have EDS and POTS, among other things, but many people think I'm gross because I dont shower often. I need to clear my entire day, take a nap after, and am only able to shower once a week with help. It sucks, so if you know someone who has a difficult time with personal hygiene, don't shame them, they are doing their best.
So many talented disabled people in your list! I'm familiar with Jessica, Stevie, Rikki, Molly, and Annie but everyone else is new to me. Thanks! (Ps. I prefer being called disabled. The other way feels clunky and over-complicated.)
I have scoliosis. I was diagnosed at 14 because the curve at the tip of my spine was "too minor" to be picked up on the nurse checks they do for scoliosis in schools in America. When I went to the specialist office for the first time she asked me to bend forward to touch my toes. I thought, okay, sure that's easy. Then she asked me to bend backwards. I was dumbfounded. I remember asking her: people can do that? When I got physical therapy, one of the aides told me I "slouch because you're a teenager." Needless to say, my physical therapy experience was not the best. In general, I think people have a perception about youth and disability. People often say things like: "you're young, at least you have your health," to people they barely know (or whose struggles they know nothing about). As if, being young means you are in good health by default. I used to hide my spinal pain (at school and work) because I felt people would be dismissive like the employees at my physical therapy clinic were. Now, I refuse to buy into the idea that my disability makes me less than. If I'm having a flare-up of pain I'll let the high school student I'm working with at that day/moment know because I want them to understand that disability comes in all shapes and sizes. You can't tell by looking at someone or assume by their age that they aren't disabled.
Hey!! I have Trigeminal Neuralgia a condition that affects the largest nerve in my face (the one the dentist numbs when you have dental work). When I'm having a flare up I have pain attacks that are incredibly intense. They can be triggered by any stimulus to that nerve from chewing to a light breeze, this often leaves me trapped in my house unable to do simple things like walk to the shops or even clean my teeth. It can be really hard having a chronic illness but it doesn't mean you can't live your life!! You just have to learn to listen to your body and sometimes make compromises, as long as you balance out your choices you will come out on top. Hope your all well xxx
Thanks for sharing. You're right. It's totally possible to live well with an illness or disability. Often a good support network can make all the difference.
I also have trigeminal neuralgia! Just out of curiosity how old are you since I've never met anyone else under the age of 50 with the condition? Hope you're not suffering rn x
@@kateflood9411 hey!! I'm 24. I haven't met anyone around my age with TN either. I've found a few forums on things like Facebook and there are a few younger people on those but your right, most TN warriors are a little older.
Aaaahh, Hannah! Thank you so much for the shout-out and your extremely kind words! Particularly glad to hear the Harry Potter stuff is appreciated ;D Loved what you were saying at the end about making it tangible with those every-day scenario stories, I've always gravitated more towards that when talking about my disability (tbh I find the medical stuff when related to me mostly boring).
ALSO it was really interesting to hear how an abled person who comes out of the disabled toilet reacts when they're not met by me :P Usually I get a shocked look, then they very quickly hold the door open for me.
I have coeliac disease, which is an auto-immune disease, not a disability. When i was first diagnosed I didn't think it would change my life a lot, but 2 years on, and it has affected my social life a lot, and sometimes mental health. I can't just go out to a restaurant and order whatever I want anymore. I have to research, ring them up to confirm they have gluten free options, and ask them questions about cross contamination, then repeat the process when I get there. There's always some anxiety and embarrassment whenever I eat out, as a lot of places aren't that knowledgeable or treat it as an inconvenience, there's usually only one or two places i can eat, so it gets old pretty fast. It's not the worse thing in the world, and I know i'm lucky that my condition is manageable through diet alone, but there's some days where it just really gets to you.
Also, check out Hannah's roundtable video on disability and relationships! It was an amazing watch for me and it's a quick way to inmerse yourself in the topic, if you don't already know much of it.
It's the first video I ever saw of Hannah and I felt it touched on so many things I struggle to talk about. I've recced it to as many people who would pay attention
We're identical twins who have been dealing with several issues with our eyes our entire lives. (Glaucoma, Aphakia/Pseudophakia, Nystagmus, etc) It definitely affects our daily lives in loads more ways than what people tend to realize. An example of this is that even though we're 21, we're not able to drive because of our vision. Most people are aware of this, but they can't comprehend what that has done to our mental health. Having no control over transportation and having to rely on our parents or friends to get us from place to place causes us a lot of isolation, frustration, guilt, and depression on a daily basis. That's just one example, but our disabilities affect our everyday lives in a countless amount of ways. Thank you for making this video, Hannah! We love learning more about other disabilities and discovering other disabled RU-vidrs! Also, thanks for being such a lovely contribution to the disability community yourself! :)
Wearing my former SU Welfare officer hat a moment on the language thing ... "People with Disabilities" is the old way of saying things - not wrong as such, just old. It was in wide use in the 00s (as were similar terms such as "Students with Disabilities") Around 2008/9 many organisations (mostly in the UK, but also worldwide) began to move to use a framework developed in consultation with disabled people called the Social Model of Disability which, amongst other things, recommended the use of language that didn't see the disabled person as having a problem, but instead society and how it works being the problem. Therefore in a general context, the PwD term was seen as giving the disability to the person, whereas "Disabled people" was seen as something that society should be helping with - so that's the term used now. There are exceptions to the rule, but I don't know them all. Of course this is my understanding of it, so if anyone else can clarify then please do.
I like that way of looking at the terminology! In a US communications class I was taught saying "person with a disability" focuses more on people-first language so that you see the person before the disability. Personally I don't mind either way because I agree that the issue is more about societies perception of disabilities. This article talks about to better than I can thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/ I relate to this paragraph from the article: "Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see. After all, no one tells me that I should call myself a person with femaleness or a person with Jewishness. I’m a Jewish woman. No one questions that. Yet when I dare to call myself a disabled person, it seems the whole world turns upside down. That’s because gender and religion are seen as neutral, if not positive, characteristics. The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out."
I am still a fan of the person with.. because I am not just disabled or unwell. I am me and my health or disability is just part of me not all of it. I am not offended by any language if the intention behind it is good.
I understand the feelings of grief surrounding the loss of productivity during the onset of disability, but I'm here to remind you that this year spent recovering & healing & processing was not a waste! Work caring for your body is just as important as work for financial gain. Thank you for sharing these stats & I hope you find relief in therapy processing through this trauma. 💙🙌
I also have ulcerative colitis. If I eat anything too fatty or greasy I end up in lots of pain and having lots of diarrhea. I have also noticed every patient is different with what they can eat.
LOVED this video! I have Spina Bifida, which means my spinal cord was not fully developed when I was born. I was also born with Hydrocephalus, which is just a fancy term for excess fluid on the brain. This condition required a shunt (plastic tube running from my brain to one of my kidneys) to drain the fluid to release pressure on my brain caused by the fluid. I also have a borderline learning disability due to this. I'm grateful that you have not experienced any mental health issues whereas I believe I have chronic depression flare ups every once in a while. (Undiagnosed though. I've been too proud to get help on top of the fact that I can't drive, so getting help would require proper transportation & I'm too scared to admit to family & friends who can help me solve the transportation issue that I have a mental health issue. Ugh.) Side Note: Loved hearing you mention Jessica, Stevie, Molly, Rikki, and Lucy! Love them all!
Omg I have Spina bifida,hydrocephalus too! Plus chiari malformation and chronic pain which is both connected to Spina bifida! May I ask what borderline learning disorder is?
Thank you for talking about the captions. I am not deaf but have multiple chronic illness’s some which affect concentration and thought process. Although reading sounds complex, I find it so much easier to process through reading the captions so am very appreciative when the captions are right! Thank you☺️
I have a quite significant form of IBS in terms of how much it affects my day-to-day. All of these stats on Crohn’s and Colitis hit home for me. A huge part of what it affects for me is socializing, since so much socializing centres around food. And IBS is my body’s reaction to almost every food. Eating anything I’m unfamiliar with can cause a humiliating, painful experience for me and it has negatively affected anything from dating, job performance, to simple phone calls with family members when poorly-timed. Long-term it has caused me to avoid friendships and gatherings for fear of them learning of this embarrassing part of my life. It caused an aversion to exercise for fear of bringing my symptoms on, and weight gain of 30+ lbs because the only thing I could eat pre-diagnosis was plain ramen noodles. It’s as if everything I eat causes immediate food poisoning. I’m on the road of symptom management, post-diagnosis and I have a Doctor who LISTENS to me and prescribes what I need for me to be nearly-fully-functioning. I still work with a mental health professional to help me process the anxiety my condition has caused and am slowly taking back control of my life. To say that my condition has negatively impacted my education, sense of empowerment and capability is an understatement. I’m not sure I belong in the disabled community, but I certainly feel strengthened by hearing some of my experiences echoed by other humans. Much love to you Hannah for continuing the conversation. There’s no cure for IBS, but I feel like I can manage to create a full life despite it when I see people like you rocking it.
I have a serious autoimmune disorder, fibromyalgia, and IBD. While not as bad as Crohn's or colitis, I am intimately familiar with the panic of getting from point A to point B as efficiently as possible. Day to day, much of my time is spent resting. I also have to be very careful about exposure to people who are even the slightest bit sick, because when (not if) I catch their illness, it can knock me out for weeks. I've actually had the same cold now for about a month and a half. It's super unpleasant. Thank you for making this video, it's so important for disability visibility. 💜🥄💜🥄
I was diagnosed with Guillain-Barré syndrome this summer and it turned in to the chronic version (CIDP). I have to be in the hospital monthly for five days for a treatment so my work and personal life and also my income suffers from it. I also due to the illness have nerve damage in my legs, so some of the muscles do not work and my sensation in my legs and therefore my balance is impaired. So I basically can not feel if I am standing upright or if my foot is placed correctly, which means I stumble/look drunk walking and it is worse if I am tired (not able to focus on every step I take) or if it dark outside and I can not see the ground well... It has been a struggle both mentally and physically. It is great you talk about these issues on your channel, I find it encouraging and also I feel we need to talk more about health issues so people are able to better understand different health issues many people suffer from. I have been really open about my illness and it has been helpful to talk about it with friends, family and colleagues.
You're amazing, Hannah, and you've taught me so much about patience and self respect. You are doing SO MUCH in general with your life, let alone for someone who is living with chronic illness! I feel so fortunate to be able bodied and not suffer with a physical illness but I know if something so challenging were to happen in my life I would look to you for inspiration even more than I do now
I have endometriosis and when I’m having a bad day with it, I can hardly stand up straight. It can make me vomit and boy, when I have a period, I HAVE a period. I have to wear multiple sanitary towels (tampons and cups hurt), several pairs of pants and usually two/three layers, and even then, I still visit the loo once every hour or so to make sure I don’t leak. Despite that, I often get told it’s ‘just a period’ because people don’t understand that even if you look fine, you can be in awful pain and frightened that you’ll bleed through all your clothes onto your office chair.
sorry for my English, is not my first language. and thanks for the captions ;) they are really helpful. I have CFS and maybe more stuff I'm still trying to get diagnosed (it's a process). I struggle with the feeling of being trapped inside my own body, I have so many ideas, motivations... I want to do so many things.. but my body is like "NOPE" hahaha is sad. I wish I could move more, read more, go outside more... but even tho is hard, I'm in a pretty good place mental health-wise. I feel the frustration with not being able to change how my body works, but I'm also in peace with it, I try to see the positive in everything and keep going, doing the best I can every day. I love all the RU-vidrs you mentioned, the only ones I didn't know about are the last two. thank you for sharing :) Also!!! I like to refer to myself as disabled, it makes me feel part of the community and it helps me to feel less alone in the world.
im not deaf but i do have an auditory processing disorder as part of my autism so im very glad you always caption your videos :) lovely video, can't wait for the rest of vlognukah!
Thank you so much for captioning your videos! I always watch with cc’s if I can and English is my first language and I don’t have any hearing issues. It just helps me process everything and understand what’s happening if there is noise in the background of the video or in my real life.
this makes me really happy! i had no idea about world disability day, even as a disabled person! (i’m also jewish so double awesome) but i’m a teen with CP, and it can be hard to find people i can relate to, especially facing things like soreness after walking up stairs, difficultly doing even simpler tasks in gym, or even just feeling fatigued after a long walk and walking slow to and from class. luckily, even though i don’t know any physically disabled folks irl, the online disability community has really helped me and inspired me so much. so thank you so much, hannah!
I also have a ileostomy Hannah! 4 months ago when I first got it I watched all your videos! It really helped me! Im also a very positive person so seeing another positive person dealing with the same thing really helped!!! I found forums was full of people complaining about having a stoma (which is understandable of course!!) But I wanted some positive story's! You are a awesome!!
I have to do 5 hours of treatment a day. Every day. 365 days a year. 4 hours of infusions, 1 hour of physiotherapy. So when I say I'm exhausted it is because chronic illness doesn't take a break, even when my body is begging for solace. But at the same time, I don't pity myself! I have an amazing support system and have literally nothing to complain about. I like to say I'm "chronically grateful" sending love!
I look forward to Vlognakkuh every year! I'm Jewish also, and it's awesome to see someone being open about their religious/cultural identity. I also just love getting eight of your videos in a row!
I have inflammatory arthritis and ME and really appreciate you making these videos :) Thanks Hannah!! I am mostly bed and house bound and find it hard to be upright for very long at a time which makes the tasks of daily living a big challenge.
Very inspiring, people struggle with chronic illness everyday and manage to live a normal life and its amazing. I have type 1 diabetes and fitting my condition into a full time career for normal people is a struggle. My fluctuating blood,glucose can effect my concentration , my mood, my energy and when it needs to be corrected i have to stop what I'm doing amd treat it. I am very blessed to have good control over my blood sugars bit that took many years
I have colitis and was diagnosed at age 9! I still have my colon and haven’t needed surgery, and hopefully never will! I’d tell you a daily struggle, but I’m 100% positive I can’t say anything you haven’t experienced. Thanks for your videos!
Firstly this is an awesome video because it’s so great to highlight all these people! Secondly you are the cutest - I’m so glad my videos helped during your recovery and OMG YES I would love to meet up when I’m back in the UK - gimme a shout any time after new year’s! If you’ll be at the next #GetYourBellyOut ball I will be there too! 💕
I'm not a RU-vidr, but I'm disabled. I have a rare muscle disease. I've considered YouTubing, but I'm not sure I could even think of content for more than a single video Haha. Maybe some day. I am new to your channel, but I like it. I find you to be so genuine and open. Keep it up!
I have celiac disease (an autoimmune disorder, not a disability but it impacts my life similarly), fibromyalgia, and some sort of undiagnosed connective tissue disorder (most likely). I get tired all the time and miss school and can’t hold a job, so this last year has been really rough. My celiac is mostly under control by diet, but I have to be so careful to avoid any sort of cross contact that I can’t eat at a restaurant with friends. It gets lonely, you don’t realize how much socializing is built around food in American culture until you have some sort of dietary restriction. And when I do get glutened, I end up sleeping for like 2 full days after throwing up for hours. My fibromyalgia is worse than it has been in a while. I can’t function on less than 12 hours of sleep and when I am awake I’m in pain and get exhausted by the simplest things, like making food or taking a shower. Noises and light overwhelm me and I get sensory overload that often sends me into a panic attack. And whatever’s going on with my joints hasn’t been helping. My shoulder slips out of place all the time. I can’t sleep on that side or it pops out. My hip aches and I start limping if I have to walk for longer than 5 minutes. So the main fix for my fibromyalgia, exercise, makes me feel worse because of my joints. I have a doctors appointment coming up to discuss my options and try to figure out what I should be doing to be at my personal optimal health. I know other people certainly have it worse, but it still makes life hard to enjoy, especially around the busy holiday season. Lots of love and encouragement to my fellow spoonies out there, it’s rough but you are not alone in this🥄🥄🥄💕💕💕
I have celiac disease, which is a chronic autoimmune disease that causes permanent damage to my small intestine when I ingest gluten. I was diagnosed 6 years ago when I was 13, and while it was relieving to finally figure out what was wrong with me, it has affected my life in various ways since then. I have struggled a lot in terms of my social life and it has increased my anxiety. People often don’t take my disease seriously, and in high school, peers found my need to be gluten free an “inconvenience” to them, leading to me losing a lot of friends. I also constantly have anxiety about cross-contamination and accidentally eating gluten. It makes eating out extremely stressful for me, and sometimes makes me want to just stop eating out altogether. It is hard to deal with, but I am somewhat hopeful that a cure may be found for celiac disease in my lifetime.
I have two chronic illnesses; one being Dysautonomia and the other is Fibromyalgia. Both of these conditions come with chronic fatigue, which makes getting through the day seem impossible. You're just constantly tired and feel like you are hungover. I basically feel like I could take a nap anywhere, anytime.
I suffer from chronic migraines. I am on medication now which helps prevent them and I am one of the lucky ones for who it works. They affect me so much in my everyday life. I have to avoid potential triggers, like spending too long in the sun, using screens too much, drinking alcohol, doing exercise, having too much sugar, having a lie in, drinking caffeine and being stressed or anxious. Constantly monitoring my life is exhausting. I have missed out on so many social events, family time and opportunities because of them, and they tend to happen on the weekend so I end up spending my time off in bed, in the dark, doing nothing and waiting for it to go away. When I have a migraine I can't speak, move, open my eyes, be anywhere other than bed in the dark and quiet. It affects my relationships with friends, family and my boyfriend most of all, who is my carer most of the time when I have a migraine. I feel so relieved to currently only have a migraine every fortnite or so. It used to be every other day. But the mediation im on often stops working for people after a while so I'm just praying that I'm not one of those people
So interested in reading what everyone has to say! I can definitely relate to some of the hardships too. I have chronic migraines and headaches, meaning not only do i get the random occasional migraines that are just debilitating but also a headache everyday, with “bad” ones very often. It puts a damper on my whole life, I have missed out on so much because i was just in pain and i live my life so scared to be out and suddenly get a migraine from my usual headache. And with the headaches, i get nauseous and dizzy and exhausted too, plus the meds i take make the side effects much worse sometimes. And i know headaches are common and a lot of people can say they’ve maybe gotten a migraine once in their life, but when its every day, its not the same, and i know that goes for a lot of illnesses and disabilities. People don’t know what its like to LIVE it every single day.
I have fibromyalgia which means that I have chronic fatigue, pain, and dizziness everyday. I guess a way of explaining that with a situation is that i have to plan my showers for a time when I know that I’ll have time to rest afterward. I can’t just shower in the morning and go like most people. Just little things like that that you might not think about can be really exhausting for me and other people with my symptoms. Maybe that will help someone understand or relate if you have something similar. Thanks for talking about this Hannah. It’s really great to hear your perspective.
The concept of Vlognukah is a great, it really should catch on more. Plus, 8 days is a good duration so that it doesn't get super overwhelming to keep up with. 10/10 👌🏼
This video has done what I have been thinking! I am not even a youtuber, but I always think it would be great if a more popular youtuber can do a video to recommend others and help them grow. Some people here are making great videos without getting the attention they deserve. Luv what you are doing. You are a great person.
I've had digestive pains from a young age and I even had a treatment for some time but most doctors thought it was due to stress/anxiety (which I still think is a part of it). I think my pains are related to the irritable bowel syndrome more than Crohn's or colitis, but discovering you months ago shed a light on these illnesses! Excellent video, thank you Hannah!
Vlognukah means so much more to me because I follow you but no one who does Vlogmas :o Also I love learning tidbits about Jewish culture when you mention them :)
I think out of all my disabilities/chronic illnesses my GERD is most easy to relate to: everyone has had heartburn/indigestion now imagine it all day everyday, you can feel a lump in the back of your throat and if you lie down it is kind of like your throat is burning. I take 2 tablets a day to reduce acid production and at least 4 Rennie tablets a day to make it manageable so I can sleep and eat properly
I have Crohn's and since this past summer have been in remission. Yay! But, I also have depression, anxiety, GERD (acid reflux), asthma probably ADHD, other chronic pain and the Crohn's medication makes me immunosuppressed so I have to be extra careful and can't even get some live vaccines anymore. The BIGGEST, most difficult thing in my adult life with my body has been fatigue. Nevermind needing a minimum of 10 hours sleep, I can usually only do about 1 or 2 things in a day. Groceries, or doctor's office, or shopping, or social event, or doing a load of dishes ect, not multiple things. When I was in post-secondary, I usually couldn't read more than 30 mins at a time without an accidental nap. For a couple months last winter, I was put on short-term steroids to help me get into remission, and though it didn't really work, there was one week out of those months where I had an "average" person's amount of energy, and it was mind-blowing. It gave me such hope, insight and contrast into my normal I've been living for about 8 years. You know when you maybe do something physically demanding and have to sit down for a bit to regain energy? That has never been my experience. Sitting down will help my body not get even more drained, sure, but no matter how long I sit, my energy won't come back to what it was before the activity. But, during that short period of time, I could almost literally feel myself regaining energy and it was such an insight into what the average person is able to accomplish in maybe a day whereas I'd have to spread it out over 7 days.
I also have Ulcerative Colitis. I was diagnosed at 17 and two years later my twin sister was diagnosed with it too. I'm very lucky because when I'm in remission I have no symptoms at all, but my colitis appears to be linked very strongly to my stress and anxiety, because whenever I had important deadlines at school and then at uni a flare up would inevitably attack. I struggle to eat dairy and people always go "oh, I'm lactose intolerant too", which is slightly frustrating because I do feel very bad for them, and it's not pleasant, but it's not the same thing. Dairy is one of my trigger foods, so eating too much could make me poop blood and all the rest of that fun stuff, which just isn't the same as having a bit of a funny tummy the next day.
One of my challenges is managing the stress of cooking. I can cook but the stress means I end up hurting myself. Depending on how stressed I feel with might put me off because the more stressed I get the more I hurt myself. It means I mostly eat cereal. It's not how I want to live but every day I have to evaluate that risk and sometimes I have to accept that if I want a hot meal then I will have to have another bruise or scar. Sometimes I decide to face the consequences and end up so stressed I vomit (unintentionally) and then can't face eating a meal. Regardless I still do what I can to manage the risks and be as independent as I can. That's just a little bit of my daily battle with my chronic mental health illness/disability. We all have our challenges :)
Invisible I aka Katie is such a great youtuber who deals with chronic pain and autism. She's the first female youtuber I found with autism and her content helps me feel understood!
I am deaf/hard of hearing and I use hearing aids to get by. One thing I’d like to impart on people who are hearing is that my ability to be able to hear and understand changes drastically based on my environment. If I’m in well light room with no background noise and just one person talking clearly than I will likely understand 90% of what they are saying. That changes completely if I’m in a dimly lit and crowded restaurant with a group of people, In this kind of situation I would at most only understand 15-20% of what others are saying. I really want hearing people to understand that just because I can hear well in one situation dosent mean I can hear well in another. I find that a lot of people just can’t seem to understand this and so when I ask for extra accommodation (such as typing something out for me instead of speaking it) then people are just confused and don’t want to bother accommodating me.
I'm still on the hunt for my diagnosis, but the doctors think we're almost there. Had scopes done 5 days ago with all the biopsies and it looks like crohns. I should get the official results this week. Honestly, after fighting for a diagnosis of something and being told I'm crazy forever, something like this makes me excited. I own my own mobile grooming company. I don't have employees. The stress is INSANE right now. Being so tired and weak I can't pick up a dog, let alone hold them up while grooming. Plus, it's the busiest season of the year for me with the holidays. So I'm working on a business plan to expand so I can eventually manage the company. I refuse to lose my company because of this madness. Refuse!
My 'short' story - I was 'diagnosed' with IBS (called ibs because it is bs. I swear it.) I say 'diagnosed because it hasn't been officially recognized by any doctor - one just said I have it cause stuff hurts and it aint anything else. Basically. So essentially, I've been undiagnosed for 15 years. Im 20... The thing that most effects my day is food. So many foods aren't "safe" for my particular system (mine doesn't seem to match up with most IBS findings). In the US, much of our social lives revolve around food and it has really been a struggle for me. Let alone, I still eat the foods that hurt me because I am super weak-willed, so I have a lot of flare ups - I just stay home a lot to combat them, which makes me want to eat more. Fun Fun. I love that more people are making content on disabilities & diseases though. It helps me learn and break some stereotypes +connect with ppl like me :)
I have chronic migraine and I’ve now had to interrupt my studies due to it, one example of how it affected me when I was still at uni was in first year. I was living in halls which were a 15 minute walk from campus, and where all of my coursemates who were in the same halls walked to campus together, I had to take the bus which could feel pretty isolating.
I have UC and often I have stabbing pains in my guts and I just cannot move, but I think the most annoying and depressing thing is that my parents and friends do not realise that it is a horrible disease, often they shame me for not eating meat and telling that I am just imagining that I cannot eat meat. I hate that they do not believe me that I need to have strict diet and if I try to eat properly I am ridiculed by my parents and grandparents.
My experience... I have a number of issues, but the one that gets me the most is my blackouts... Multiple tests and observations later, it appears to be a conversation disorder but they aren't sure... I have no warning 99% of the time so I need to be with people constantly... I can't go alone to shop or even just go on a walk without people knowing where I am
This is series is just begging to be named Hannah-kuh, yw. And as an individual with UC those percentages were informative and some of them saddening and representative of what I am currently facing and also clarified how I had one of the rarer bad cases of UC, I live with a stoma bag as well so this really hit me right in the feels.
you're such a delight to listen to! i'm really looking forward to hannahkkah! (has this pun been made before? i feel like it has. i'm sorry i couldn't resist it)
So I am mostly in a wheelchair as I suffer with fatigue a lot as I have cerebral palsy I also have UC like you I love watching your videos especially the ones about UC you’re very inspirational and have helped me get through a lot of struggles that comes with it thankyou
HinduCowGirl is a Norwegian train driver, and her videos are stunning. All four seasons. If you cannot leave home, I can recommend them as a way of seeing the world. Wonderful if you are stressed. No commentary, no music sooooo restful.
I never go anywhere without a purse/backpack/bag of some sort to hold just-in-case stoma-related supplies. (I primarily use a closed-system pouch (part of a 2-piece system), so keep a few extras - plus some disposal bags - in a cute makeup-type bag in a cross-body purse.)
I’m autistic and it started to really affect my life about three years ago. I was undiagnosed and dtressful event after stressful event happened and it was basically like my body shut down a bit. I started to get so tired I couldn’t think properly and everything made me nauseous and I had horrendous headaches. I pretty much quit school. I was also struggling with my parents at the time. Eventually that lead to me being admitted to a mental health clinic where I got diagnosed with autism and met so many autistic people. I was still extremely tired and felt really sick very often. I was there for six months and got a bit better. The decision was made that I shouldn’t move back into my parents and I moved into a group home, with trained staff helping out. I think that was one of the hardest moments of my life, as I wasn’t just struggling with all the physical symptoms, but also now with missing my parents and living in this new situation and starting special education because I just couldn’t manage the normal hours and the stress. It’s now a year later and I just had one of the first moments where I was tired, but just tired, not feeling like I was going to throw up or like my head was full of fluff. School is going well now too, my grades are good and I’m managing more and better. It doesn’t mean everything is perfect, but I can now manage what life throws at me better and I’m much more hopeful for the future.
ChronicallyJacque is another really good one to watch :) I also watch a lot of Jessica Kellgren-Fozard and Molly Burke. I love them! Tommy Edison (the blind film critic) is another fun one, but I don't know if he's been filming a lot recently. Thank you so much for making this video! It is amazing! Special Book by Special Kids is not a person with a disability, but he interviews and talks to people with all kinds of disabilities in every video and it is absolutely fantastic
I think the hardest part for me is never knowing when I wake up what parts of my body will be sore or not functioning. Never knowing when I will have to use my cane. Never knowing when one of my joints will fail and I'll collapse. Never knowing if that fall is going to land me in the emergency room as it so often has in the past. The uncertainty is so hard because my body isn't as predictable as I'd like it to be.
I have Multiple Sclerosis, Endometriosis, Polycystic ovarian syndrome, and have no thyroid because of thyroid cancer history. Put all those things together and I am in pain and exhausted most days. But I don't show it because I need to get on with my day. A lot of people don't understand that chronic conditions mean never getting to "healthy" or "normal" again but learning to live with a new standard. And that standard definitely can get worse over time.
It's like months later but I would be filled with regrets if I didn't express how nice it was was for the topic of colitis to COLITE-IS with your Vlognukah. (so proud)
I have a lot of undiagnosed stuff but I sometimes need to walk with a cane so I can actually go somewhere. Being a student on a college campus, this causes a lot of stares and people asking me questions, even when I don't know the person at all. For whatever reason, my cane is a gateway to invasive questions and I wish I could just lie and say that I sprained my ankle or something like that, but I can't. My friends, who I know are trying to be loving and supportive, tell me my cane is so pretty or badass when I really just wish they wouldn't acknowledge it at all. I have so many symptoms that aren't resolved in the slightest way and I keep getting new ones, and my hope that I will ever get any accurate diagnoses keeps fading.
Brain injury, main thing is fatigue, so everyday feels like first day at work/hungover tired etc, my ability to read people, get jokes etc is gone. And one of the most irritating though harmless is face blindness so someone who apparently knows me, will start talking to me, I haven’t a clue who they are, equally my lovely brain will sometimes think it knows random people!
I have multiple (invisible) disabilities and a chronic illness. I was diagnosed with type 2 diabetes in 2016. What I eat, how much I exercise, how much I sleep, my mood, etc. affects my blood sugar. I also have language processing issues, a speech impairment and sensory integration disorder. I’m so lucky I can get the accommodations I need despite my disabilities not seen rather than you seeing someone in a wheelchair and you instantly think “That person is disabled.”
I have a few different conditions related to my GI system. I have 2 diagnoses and an as of yet third undiagnosed something happening. Mostly it means anything to do with eating to the bathroom is either uncomfortable, embarrassing or both. Generally, I try to avoid going out to eat anywhere when I'm first getting to know someone or if they will not let me choose the place so I can be sure I won't have a bad reaction. I also have a very loud stomach, people have actually commented 'that sounds painful', so if I have eaten something I generally prefer to be away from strangers for a little while or relax somewhere/ have a nap to let my body figure out what exactly it is supposed to be doing with the food. It takes a lot out of me for my body to digest food so I get very sleepy while digesting. Basically, I'm scared of eating food that I don't prepare and my aim in 2019 is to start therapy to try and address that issue while also trying to get a referral to one of the top gastroenterologists in the world who happens to live in my city. Fingers crossed I get some better answers
Hi Hanah, My name is Darci Parks, I am 39 years old, and I live in America, I came across your RU-vid Channel while trying to find inspiration for my channel, and I am glad I did, you are amazing!
My IBD flare ups would always happen in summer as well! Never figured out why that was a thing... Thanks to my medication my flare ups are a lot more spaced out now and seem to happen at more random times.
I some times think it would be easier to have something physically wrong with me instead of being anxious and depressed. I have chronic anxiety and depression, in the sense that i've had it nearly all my life. I'm probably wrong, but it is just so hard to get help when your problems are all in your head.
A loved one of mine has spinal stenosis and is, partially due to this and partially unrelated, overweight. The number of people who are nasty to her and treat her as if she's gross and lazy is so disheartening. They don't seem to care that a) being skinny would not heal her spine and b) she is sometimes unable to walk to the bathroom, much less exercise. She's actually lost over one hundred pounds through dieting, but people blame her disability on her weight and refuse to think more deeply about it. It's disturbing to me.
Yay for Vlognukah! I'll be joining you and doing Vlognukah in 2019 (I just didn't have my sh*t together well enough to do it this year. Just getting back into vlogging again)
I meant to comment your last video with Emma on your talk regarding your different disabilities. Mona is a disability as you are, 'less able'. She will actually come under the umbrella term, 'hidden disability'. This is for any long term illness that is 'invisible' to others and effects you on a day to day basis but is manageable with treatment/medication/exercise, such as type 1 diabetes, colitis, chronic pain etc. I found this out when working for a professional disabled theatre company and working with young adults with special needs. It made my t1 diabetes feel important to have this label and gave me more confidence alongside my ataxia. I now am a full time wheenchair user. Other labels which you will know of are: learning disabilities(dyslexia) mental disabilities, (bi-polar, schizophrenia). I'm hesitant to label autism under learning disabilities, as the spectrum is so broad. I also put chronic pain under the hidden disability, but this can't always be managed and there is no treatment except pain killers/rest. So, for hidden disability, welcome to the club! ♿🇬🇧
And in reply to the end of the video, my dad said that due to his condition he can no longer be so spontaneous. Everything has to be planned, he has to eat and take his pills at a certain time, he can only do so much activity for a period, he can only drive a small distance in one block, and just coping with work leaves him exhausted so he lacks the energy to do things outside of it. Thinking about it now, I should show him some of your crohn's/colitis videos.
I have chronic fatigue syndrome and am currently watching this video right now because a) I'm off work because I work part time because I don't have the energy for full time work atm and b) because I got up and had breakfast 3 hours ago but then ran out of energy and had to lie down and have been trying to summon the energy to get dressed ever since 👍🏻 but like now it's lunch time... and this is how whole days disappear.
I have been thinking I want to blog about disability, I've arsac syndrome, it's hard being disabled.. in all ways.. but having it define you too is not easy to over come .. But it does make you see what most don't.
I spent 18 years working with special needs young men with aggressive behaviors. I ended up getting my neck head and shoulders and upper arms hurt twice. It’s been a long road, 15 years of chronic pain, chronic migraines chronic muscle spasms. So I am now on my Social Security Disability. I work 40+ hours a week and I was on call 24 hours a day, I had three children I was raising and all their animals and a husband that was in construction on his own company who wasn’t around much. I went into a deep depression two times where I just didn’t want to live it up and tried but failed. Depression plays a big part in my life do you do I can’t do anything anymore and all the pain. And I felt like I was all alone in this injury. I was married 35 years to the same man who ended up in a divorce six years ago and he cheated on me and I put him out of the house change the locks. I did get the house and the life insurance policy. So I sold the house and I bought a condo because I can’t take care of the pool and all the palm trees and gardens. It’s hard being alone when you never lived alone in a lifetime. It’s hard to figure out if you want to make a dinner because you’re wasting food and making a mess doing it so then you just don’t do it don’t eat out all the time. Anyhow my divorce cost $40,000 it was a cricket attorney. He’s very nice guy but he knew what he was doing when he asked me to put a lien against my workers comp injury case , And at the time I was on so many medications and depressed and going through a divorce seeing different doctors all the time physical therapy and acupuncture but just things never end. My pain doctor told me ahead of time the divorce rate is 72% when the woman is injured because it’s so easy for the man to walk away and I thought not me we’ve been married for too long but yes it was me that it happened to. So no more holiday get-togethers or barbecue get-togethers this is tore up the family so bad. So now I just live by myself I bought a little dog he keeps me in good company he goes everywhere I go. And then with all the problems that I’m having I found out I have TMJ. Found the injuries that now I’ll have to deal with the rest my life. I have to be watched closely and someday I’ll have to have my next surgery it’s not just one neck surgery it’s gonna be a lifetime and neck surgeries and then it goes down to your back. So yes I do know people have it worse off than me. I just get really down some days. Anyway that’s enough sadness for you. Have a good week hon 🌺🌺
As a Type 1 Diabetic on a daily basis if I'm going out I tend to think "Will I be able to guess how many carbs is in that? What if I have a low blood sugar and I can't find something with sugar?" I try not to think about it too much because the stress sends my blood sugars up to high. Ugh, the struggles hahaha. Thanks for sharing this video!
