Why I use a Wheelchair when I can walk... 🤫

don't forget to subscribe! ♡
-------------------------------
⭐️ instagram ▹ / zara.bethx
⭐️ all socials ▹ linktr.ee/zarabeth
⭐️ discord server ▹ / discord
BUSINESS EMAIL ▹ [e-mail]
-------------------------------
⭐️ stream my music ▹ distrokid.com/hyperfollow/zar...
⭐️ where i get my music (1 month free!) ▹ share.epidemicsound.com/g31jc...
-------------------------------
⭐️ FAQs ▹
1.What conditions do I have?
‣ I have Tourette's Syndrome, FND and POTS along with some mental health disorders.
2. How old are you?
‣ 18
3. What is FND? 🧠
‣ fndhope.org/fnd-guide/
4. What is Tourette's?
‣ www.cdc.gov/ncbddd/tourette/f...
5. What do I use to edit videos? 🖥️
‣ Final Cut Pro X
6. What filming equipment do I use? 📸
‣ main camera - amzn.to/3MW7v8w
‣ tripod - amzn.to/3P7G8Ly
‣ vlogging camera - amzn.to/42CBQ1G
‣ mic - amzn.to/3qD5gjg
‣ wireless mics - amzn.to/3X2RxOE
⭐️ KZbin Setup + Equipment ▹ amzn.to/42QmxCN
⭐️ Recommended Products ▹ amzn.to/41wXJPX
(not sponsored! but these are af links so i make a cut from any purchases💕)
-------------------------------
My name is Zara Beth (zeezee25 on tiktok) and I post videos about disability, neurodiversity and what its like living with Tourette's Syndrome, Functional Neurological Disorder (FND) and a chronic illness called Postural Orthostatic Tachycardia Syndrome (POTS). Tourette's syndrome is a neurological condition causing involuntary movements called tics.
I use my social media (TikTok, KZbin and Instagram) to advocate and raise awareness for my conditions and show what it is like living with a disability as a neurodivergent person.
I am also autistic and share my sensory struggles along with my experiences with mental health disorders.
I show what its like having a disability and the accomodations I have to help my daily life. I am also an ambulatory wheelchair user showing my life using mobility aids and how symptoms change from day to day!
I am also a musician with a popular song called "She's Mine" available on all streaming services - I wrote, produced, mixed and mastered all my songs myself! I am also an artist and a writer. I love reading and I'm currently writing a novel and a book about my life!

[@whatthemusicknows]

Not all disabilities are visible. Not all disabilities are the same. Not all disabilities are widely known.

[@Lil_Ducky97]

This! Having to explain to people over and over again why bp1 is a disability (one of the few mental health disabilities) is crazy. Sometimes people appear fully abled but aren't and that's hard to explain to people that haven't dealt with that

[@theecharmingbilly]

Boo hoo, explain it or shut the fk up.

[@emilygilbeyful]

Not all disabilities are real though either. If you have a real disability, you don't keep banging on about it. Most people I know with congenital disability, brain or physical injury at any point before birth or during life, real neurological or autoimmune diseases like multiple sclerosis, arthritis, sarcoidosis, epilepsy, lupus etc evident since birth develop coping mechanisms that allow them to hide their pain, hate being seen or considered as weak. They would do ANYTHING before using mobility aids actually!

[@Alex-qn7qp]

​@@emilygilbeyfulEveryone is different you can't base everything on the people you know personally

[@emilygilbeyful]

@@Alex-qn7qp I know. But some conversion disorders, somatic disorders, factitious disorders make people either think they are disabled, or physically cause the disability and it's not actually physical. This bothers me. When they are happy and in a good mood they can run and dance? When they get anxious and depressed they can't walk? Sorry, I think that is weakness, and sometimes people need to get a grip!

[@imprettywhenicry2311]

i always feel bad using my wheelchair in public because sometimes i will reposition myself and the looks people give you are so uncomfortable. it makes me feel like i’m faking it even tho i know im not

[@Zara_Beth]

it's difficult, but know that they're just judging from being miseducated, you're not in the wrong for using a moblity aid!

[@ahabsbane]

Some people are so ignorant, it used to make me feel bad too, then I realized that while they don't have to remember learning to walk, I know what it's like, because I've done it twice! 💪

[@tamzinmole530]

If ppl are giving you looks, then they are rude ppl. So why care what rude ppl think?

[@howsmart007]

You should never feel ashame to use aid when you need it, if people took the time to be aducated they would understand not all disability are visible especially with you dont have a permanent mobility issue, my mom is in a wheel chair and even her is judge tough she is missing a leg but you are your own person and deserve respect and love never let not educated people bring you down as they dont matter at the end of the day if you just do your thing to be happy as life should be about loving life, learning and sharing

[@dreamhaven7875]

That is exactly how I feel. I wouldn’t necessarily call what I have flare ups even though it’s a conglomerate of chronic conditions. They just affect me at different times and some make the others worse (it’s a crap storm) lol. Anyway, Case in point I had to use a wheelchair last week when I was at DisneyLand, but able to walk with my daughter on a college campus tour 2 days ago (I paid for it dearly though) I am incredibly embarrassed especially because I am young and I have pushed myself when I knew the consequence could lead to me fainting or something worse.

[@robyn220]

i appreciate this post. people seem to not understand that just because someone is capable of walking short distances or on “good days” they still may still NEED a wheelchair when it’s long distance or unknown territory or a flare up is happening. I’m a care giver and people are so bold and rude at times about this. Also, the use of a handicap parking pass. Like not all disabilities are obvious and visible to others. don’t challenge strangers about their parking, if they have a pass they have it for a reason!!!! i can’t believe how often people bitch at me and my person about that parking pass it’s unbelievable. i once had a older gentleman literally follow us in his car after leaving a store and nearly run me off the road demanding to see my handicap pass i had displayed. it was terrifying and infuriating. Sir you almost caused a multi car accident and over what!!?? he had a pass as well and we hadn’t even taken the last spot there was at least 6 other handicap spots left. i don’t understand people’s audacity at all!!!!!

[@brendabowers2320]

It’s truly apparent when you get out of your vehicle and you hear someone yelling across the parking lot, “your not disabled!”. If they only knew how hard it is on those of us that have to wait for the perfect day and time to go to a store in the first place. Just putting on clothes makes it hard.

[@LarsaXL]

That is insane. Hope he was arrested for that.

[@catherinewilliams3850]

My second cousin has chronic fatigue and fibromyalgia. She was a fit young lady who worked from the time she left school at 16, her last job was s forlk lift truck driver, she loved it. Then in her mid thirties she suddenly started struggling to get up in the morning and was wracked with pain. After some time and many tests she was diagnosed, she has medication to help but when she has a flare up she has to take much stronger painkillers, she is also on antidepressants. People look at her and think she is perfectly healthy, a nasty note was left on her car when she and her mother who also has trouble walking parked in a disabled space with her blue badge clearly displayed (UK). She sent a photo of it to me later that night and I took to our local town fb information page and had a rant about it showing the note. The response I got to the post was amazing, so many others had had similar problems. One lady said she cared for a disabled child and had to take her into the disabled toilet, when they came out an elderly man had a right go at her saying she shouldn't be using that toilet he didn't believe the child needed to. Even the local paper contacted me asking if they coukd do an article about the post, I spoke to my cousin and she was happy so I told them to go ahead if it would help people. I just wish people would mind their own business and stop judging people they don't know.

[@judedeprey6831]

@@brendabowers2320That has happened to me as well.

[@mygreatbigfoot1679]

I got scowled at by an elderly couple because i was using my blue badge to park in the hospital car park. They were pushing a shopping trolley down the pavement. I felt that if i parked in an ordinary bay perhaps people would object and say you have a card yet you don’t use it and take up our spaces whilst there are empty spaces in the disabled bay. Which there were. I guess they thought they knew better than the consultants/nurses/doctors that worked there. Amazing the time they waste at medical schools, ain’t it. I should have asked them for a second opinion.

[@mcrchickenluvr]

Something that many able bodied people don’t realize is that about 70% of wheelchair users are ambulatory. My niece has epilepsy and it has caused her permanent neurological damage. Her body gets tired and weak easily if she has to do a lot of walking or standing. But people see her stand up or even bend over in her chair to pick something off the floor or go to the bathroom and think she’s faking it. Even when they literally see her collapse because of it. It sucks watching her go through that.

[@nat3199]

What makes me mad is like what do you even have to be on about, like do you want someone to literally be dying, fat, etc... do you want people to be visibly suffering (according to you), just so you can what....feel less "jealous?," do you want to go for a ride or something? Like what the fuck is it

[@mcrchickenluvr]

@@nat3199 one time I was out Christmas shopping with my niece. She was having a good day health wise but still wanted to park closer to the mall entrance just in case. I get her chair out of the back of the truck, she had a power chair for longer trips, and some asshole saw her stand up just to sit in it. He walked over to her and started berating her saying that only crippled need those chairs. She told him that she has it for her trips through Narnia. And that without it she’d end up crawling through the Garden of Youth which he undoubtedly never seen in his old as fuck age. He didn’t appreciate being called old and told us that we should be ashamed of ourselves for mocking people. I told him he should be ashamed of his lack decency and to kindly bugger off. Then when he saw her not 30 minutes later in the midst of a seizure he gave us a backhanded apology by saying that she should’ve told him why she had the chair instead of being a bitch. I said he was the one being a bitch, not her.

[@MJ-gj6mj]

​@@nat3199 I don't know....good questions!!

[@misspatvandriverlady7555]

@@nat3199Maybe people have never been cared for and wish they could be? I have never had much in the way of emotional support, certainly not from my birth family, and my physical and mental conditions, temporary or long-term, were routinely denied and minimized. People who have been consistently starved of basic compassion and support may well feel jealous of someone they see receiving it. 🤔

[@trifel45]

My daughter has myotonic dystrophy type 1 and uses a wheelchair when a lot of walking is involved, like at Disneyland or going to the zoo. She got a lot of judgment from others who saw her get up and walk normally when we would stop to go on a ride or see an exhibit. Energy conservation is so vital with certain disabling conditions. Over exertion can cause a crash and hours of needed recuperation. Thank you for spreading awareness.

[@oirampeceda2409]

I don't know if Disneyland still allows wheelchairs to front of the line? Did they allow her? Just wondering.

[@xLiLlyx98]

Hell, i can only begin to imagine how exhausting and painful it might be for someone with a chronic illness if even my ablebodied legs and lower back start aching like crazy after standing up and or walking around all day. Glad to hear that you can still go places and enjoy them together! And I mean, to be fair, I might do a double take if someone got up and walked around seemingly normally at first because I have only ever seen people get up and switch to walking aids from a wheelchair but yeah... no judgement :)

[@jacqwerner7919]

I have hereditary sensory neuropathy type 1 also called CMT it affects the myelin sheath that surrounds the nerves it deteriorates which then in turn it affects the muscles. And it is classified as a type of muscular dystrophy and everything she is saying here is exactly what I go through as well. When I feel good oh my goodness I go crazy and I don't Pace myself and then I'm down for a week and my husband just constantly tries to get me to Pace myself but it's so hard because when you feel good you just want to do everything that you couldn't do when you were incapacitated I haven't figured out the balance yet I sure hope things go better for you and your family.

[@oirampeceda2409]

@@jacqwerner7919 you will find your pace. Worry not. God loves you.

[@dawnchesbro4189]

​@oirampeceda2409 from what I know, Disneyland will hand out timed passes - correlating to their relative "place" in line - to non-ambulatory/limited mobility riders. They and their party can come back to the ride at that time and skip the line. They changed it when they discovered families were "renting" disabled people to skip the line. So a few horrible people ruined the accommodation Disney allowed to disabled people with limited mobility.

[@FifiLeCat]

I like to frame my needs as, “some days I need more support than others.”

[@etmohnhome8163]

I think that's perfect!

[@lulumoon6942]

*SUPER*

[@b.santos8804]

That's what I tell the bartender.

[@lulumoon6942]

@@b.santos8804 😏

[@Silvermoonscorpion]

Exactly 💯. My neighbors do not understand this. I have a disabled parking placard in our parking lot which is free as per law. Bc some days I'm great, they think I'm a fraud. What they don't understand is the days they don't see me out and about it's bc I'm on my couch or bed and nothing works well. I'm legally disabled yet they think they should have my "perks"- Ok but do you realize what I had to endure to "earn" my benefits bc it's costly. Literally and metaphorically.

[@KabobHope]

What a wonderful, simple video that explains how your disability affects you. It had never occurred to me that wheelchairs weren't either all or nothing. Thanks for educating me.

[@beatemuller3690]

Same here

[@littamazaraki6629]

Thank you!

[@AnimateTheArts]

Samee Ty

[@leopardsun]

It's awful that some people will assume they understand disabled people's needs better than the disabled person they're talking to.

[@SatumainenOlento]

Yes! The audacity!!! 😊 But those people are normally not people who I want to associate with.

[@sjsammystudios]

I am a gymnastics coach and in one of my toddler classes, there is a dad who uses a wheelchair. However, when his daughter’s class starts, he switches over to a cane and you can tell he just really wants to be there with his daughter. She always has the biggest smile on her face and you can tell she loves her dad so much. Its the sweetest thing ever

[@RosenrotRtLiebchen87]

he's saving his energy for his daughter

[@5Demona5]

It's so sweet he tries so hard for her. I feel she'll greatly appreciate it when she grows older

[@Peter-oh3hc]

So sorry you need to explain this. I deliver wheelchairs and other walking aides. The number of things that effect walking are staggering

[@koellekind]

Omg :'-)

[@squiddwizzard8850]

​@@Peter-oh3hc ... Was, was that pun on purpose?

[@TSUYOMIchan]

This hit me so hard because my partner has been encouraging me to use more resources to avoid the extreme flare up’s that happen when I push myself. Thank you for sharing.

[@blackieblack]

>partner

[@connorhart7597]

W companion. My wife has to occasionally use a cane and she gets really self conscious about it, and worries about judgement from others. I'm glad you're like her in that regard, having someone to encourage that, I can't imagine how many people could be living better lives if they didn't have to worry about how others view them using a mobility aid.

[@Convict2Gardener]

@@blackieblackmaybe one day you’ll get a life partner

[@jollyquinn430]

​@connorhart7597 That's so true! My mom's ex needed a hearing aid advice. But he was too self conscious about it. He probably felt weak or disabled with it. (Back then there was a lot more stigma) and he didn't even want to wear it when he was home alone with my mom. My mom loved him. But not being able to have a conversation really bothered her. Communication is so important to her. And eventually she had to break up with him. He told her he'd k*ll himself if she would. (Which was totally wrong and manipulative of him ofc) And he did actually k*ll himself. But even his brother told my mom that it wasn't her fault. But it really affected her. But yeah, he'd probably still be alive if he wouldn't have been so selfish conscious and so scared. I'm glad that there are such big changes in our society nowadays when it comes to disability and all that stuff. But you're so right. So many people suffer just because they don't dare to accept the help they need.

[@ShoutsWillEcho1]

This hit me harder than mommys truck

[@jaelyndennis8736]

it's really lovely hearing from other people with chronic illnesses talking about just how much our "ability" level can fluctuate from day to day. So many people expect me to always be able to be like I am on my very best low-symptom days

[@catonyoutoob]

it's like the spoon theory! i can relate to this so much. people assume i am overreacting when i have a flare up because i "was fine yesterday," but on the average day, i'm on autopilot mode & barely functioning, masking until i can go home and sleep because of how exhausting it is to pretend to be "normal", or just exist in general sometimes. it's so hard, but it's only apparent when i'm having such a bad day that i can't even hide it anymore, and then suddenly it's just "it can't be that bad!!" They don't realize i am not lazy, i just have less energy and every task seems to take up a lot more energy, even just walking around or keeping myself alive and clean 🥲🥲 sorry for the rambly comment, i just felt happy seeing a video like this on my page as well, and your comment resonated a lot! i hope that with more awareness, there will be more understanding in general from people who don't even have to think about these things. in general, though, i don't understand why some people can't comprehend that others struggle wirh things that they don't. i consider myself privelaged in a lot of ways, but some just deny that privelage exists altogether just because they've never experienced anything but.

[@misspatvandriverlady7555]

This is so much milder an issue, but in my mid-30’s, I started getting PMS, and now I get all grouchy and weepy for a couple days when Aunt Flo is about to visit, and now I get what everyone else was talking about! Point being, it’s easy to think others are “exaggerating”, or “being dramatic to get attention”, or “hypochondriacs” or whatever until you experience the issue yourself! I try to believe people when they share their lived experience; who am I to judge what others experience? It IS easier to understand experiences I’ve actually had, though! 🤔

[@pdatnc]

I have an autoimmune disease, and I understand how important it is to back off "normal" activities when you're having a flare or trying to prevent one. I also understand what it's like to look like the "picture of health" even though you're sick as hell! Never apologize for self-care

[@LumiSisuSusi]

I resonate with this. I have pernicious anemia and it went untreated due to medical ignorance and misdiagnoses. As such, my muscles became very wasted to the point where a physio said she'd kill me if she even tried aqua therapy. Even though I now have taken charge of my own treatment, if something physically demanding such as flying and I need to catch a connecting flig5in for example Schiphol airport I become very ill due to the stress on my body. Next time I'm going to register as needing wheelchair assistance as the 2 times prior I became very ill for over a week and was stuck in bed as my body can't handle such stress. Even something like Sitting and keeping my head held up is strenuous, but people think I'm healthy as I walk and talk etc. I was signed off as disabled before I left my home country and moved to my partners homeland.

[@pdatnc]

@@LumiSisuSusi Always keep the focus firmly on yourself and your needs. No one else will and no one else can, therefore, random opinions have absolutely no bearing on you or your needs.

[@MJ-gj6mj]

Exactly! I also have autoimmune conditions and the fatigue is REAL. People think it's just a little tired....like no, if I don't use mobility aids and/or take enough breaks I'm done for a week. Even getting my haircut is a huge commitment.

[@pdatnc]

@MJ-gj6mj I often describe it as having your "plug pulled out." It's like your life force is gone. It's so much more than "tired."

[@annaschwirian7548]

I suffer from a autoinflammatory disease that has no cure. I love my current job because when I tried to leave because I was having severe flare ups due to being outdoors alot . They instead asked questions and found a way for me to do My jobs indoor instead. It's been a blessing because other Jobs didn't care that I had a disease (actually have three neurological, autoinflammatory , muscular) or would use them as excuses why I wasn't given opportunities in the company.

[@Hoshikogirl]

I really appreciate the genuine explanation without guilt or hate towards people who don’t understand.

[@SizemoreMusic]

It really does feel like warm rain, huh?

[@kraigsmusicalworks4400]

True

[@ImAtYourMumsHouse]

I mean, if someone treats a disabled person badly for being able to walk while using a wheelchair, they should feel guilty for that. Guilt helps us understand when we're in the wrong and pushes us to do better. No emotion is inherently bad.

[@hSquaredSunshine]

​@@ImAtYourMumsHouse At the same time, I have seen people abusing the accommodations made for disabled people many times and even laughing about it. They, too, should feel guilty but they don't. Those people make it bad for EVERYONE.

[@sg9931]

People who don't understand are fine. It's the people who are ignorant, accusatory assholes that I can't stand.

[@tracyhue23]

My daughter can relate. She has been an ambulatory wheelchair user since she was 15. The looks and questions happen all the time. She can’t use her wheelchair at work because it’s not exactly handicap friendly to employees. She has Ehlers Danlos Syndrome. Her wheelchair was her best friend at dance competitions. Some studios were rude about it and her teammates and instructors would politely tell them why she has a wheelchair and to stop being rude about it. Not all disabilities are visible.

[@naomiemoore5725]

If in the States, employers MUST be ADA compliant.

[@taradale811]

I have Ehlers-danlos syndrome too and it's so badly miss understood.

[@aynDRAWS]

​@@taradale811what is it? Ive never heard if it, and I don't want to google and get an answer that doesn't correlate to how an actual person feels about it/how they experience it. Would you mind explaining it to me?

[@taradale811]

Yea so Ehlers-danlos syndrome is a family of conditions mine is HSD/HEDS its a collogen issue. Its a genetic condition that is very rare its painful and caused a huge variety of symptoms depending on your pertuquler form. So some of the symptoms including CRPS, POTS, ADHD, ADD, ASD GI Disfunction, MCAD - this is a serious allargy issue that can mean we can have anafilaxis to anything meds, foods, environmental allagens ect, we get heart valve issues, bleeding issues as platelets count can be affected we also tend to be amun to local anastasia and have collapses under general anastasia. If your female you have high infection rate when pregnant, high miscarrage, high still birth and during labour High chance of meternal hemorrhage. We have high infertility rates. We bruise incredibly east and CPS/SOCIAL services steel our children and accuse us of munchausens by proxy/ physical abuse when our children show symptoms of the conditions because most doctors have never heard of our condition there are 67million in the uk only around 14,000 of us have a diagnosis and it took 30 years for me to get mine and CPS tryed to take my only child because they are showing signs of inheritance. My local representation in Parliament has responded to say the NHS only started training on the 28th February 2022 we are abused and saverly neglected by the medical community and doctors tend to make our condition far worse by misdiagnosis and prescription of wrong meds and therapys lm extremely trumatizing by what iv been through due to my condition and constently even with 2 diagnosis I'm told my condition is entirely in my head and made up for attention.

[@taradale811]

@aynDRAWS most doctors have never heard of it eather and this is unfortunately dangerous to those who suffer from Ehlers-danlos syndrome.

[@AG-yj1jv]

Thank you!!! It's especially difficult when you're young. When I tried to go back to school, a man threatened me because I parked in handicap parking and walked in to the building unassisted, and REFUSED to accept that I had a legitimate reason for parking where I did (with a permit) because I could not walk all the way back to the far end of the lot after classes & had ended up sitting in the icy slush/nearly losing fingers before I got the permit.

[@keeperofdimensions]

Why are there so many stories about people being mad somebody parked in the handicapped spot like bro 💀 especially if it's an able-bodied person complaining. Like it doesn't pertain to you dude, park somewhere else and mind your own business lol

[@keeperofdimensions]

Oh, can't edit on mobile. Sorry if "able-bodied" is an offensive or degrading term in any way. I didn't mean to imply that those with disabilities or chronic illnesses aren't able-bodied, I meant referring to those who aren't disabled and don't have chronic illnesses. Not sure if there's a better term for that, but I just wanted to clarify that I didn't mean anything offensive. Hope you are doing well also, stay strong ❤️

[@Lilsoupgremlin]

You validate my needs for my hypermobility. Thank you for being vulnerable so we can feel important.

[@beckiej.morris8471]

I’m an EDS person. 😉

[@Lilsoupgremlin]

@@beckiej.morris8471 I suspect I have EDS and after being on a wait list for genetic testing for a YEAR I got a call…after losing insurance coverage 😭

[@Faesharlyn]

Smol Spawn uses crutches or a cane and has a bag system to carry things in small bags instead of a big backpack.. it helps a lot to "save" the spoons for other things. We both wear ring splints all the time.. and have a collection of compression wraps, heating pads and ice packs that keep us moving Zebras Unite!

[@aprildonoghue-mj9pf]

I’m a teacher and am currently trying to learn more about neurodiverse and disabled people so that it is easier to help them in classes and these videos from you and other content creators such as you have really helped, thankyou ❤

[@vasama3]

Teachers like you are the best!!

[@aprildonoghue-mj9pf]

@@vasama3 aww thankyou ☺️

[@Cedar_Ashbe]

Teachers like you are why kids still attend school!

[@alishaokeeffe7574]

Thank you for trying. It’s the bare minimum but not all will

[@karenneill9109]

I used to work in AT (assistive technology), and was forced to medically retire at 38. I now am a part time wheelchair user. I had so many teachers say things like ‘Using a computer will make her lazy, she won’t learn to write.”. This is the exact same thing. Writing is easier most of the time. If someone is choosing to use AT, it’s not because they can’t write, or are too lazy to, it’s because it means they can actually get it all done without utterly wiping themselves out mentally and physically.

[@SeeSaw99]

I've never heard of this before. Thanks so much for taking time to educate me on this condition.

[@asterling4]

one helpful way to think about it is like eye glasses. most people who wear glasses don't wear them 100% of the time. they can see _some_ things clearly, or they can strain really hard to see for a bit. virtually every disability/mobility aid in the world is like that. some people need them all the time, but plenty don't, and just like with glasses, anyone who needs them AT ALL should be able to use them. because they make life better!

[@dabordietrying]

​@@asterling4 the way i wish i could be one of those glasses users 😫 I've had several friends lose their glasses and I'm always like ??? how ??? they're not on your face 24/7?? you can see without them ? my eyes are so weak lmao

[@dilsiam]

I use my eyeglasses every waking hour, everyday. Without them I become effectively disabled.

[@StrollingArtist]

@@asterling4most people I know from the first second of my life wear glasses every second they’re awake and not showering. The other thing is using contact lenses. Some people switch. So I don’t agree with the ability to see (unless you consider 25 cm as an ability)

[@asterling4]

@@StrollingArtist i absolutely understand! plenty of people can't see at all or function without their glasses, even for a few minutes/seconds. but it'd be completely ridiculous to say that ALL glasses users fall into that category. are you familiar with "nearsightedness" and "farsightedness"? these are two very basic forms of vision impairment. many people have a mix of the two, or have an astigmatism, or another condition that makes their sight extremely impaired. but those with _only_ nearsightedness or farsightedness can see things that are either close to them or far away. this is why they might put on glasses only for reading, or might put their glasses _away_ if they're looking at something close-up, like their phone or their homework. once you know a bit more about how vision impairment works and meet a few more people, you'll know what i'm talking about! plenty of glasses users need their glasses constantly, but plenty others don't. this is about how _both_ types of disability exist! just like with wheelchair users. no one's saying that paralyzed people don't _exist._ just that ambulatory wheelchairs do _also_ exist. not everything is black and white, and most things like this are on a spectrum!

[@Brain_not_braining]

A girl at my school needed to use the elevator, but she didn’t have her wheelchair with her. A sub teacher saw her and got REAL mad, and yelled at her to the point where she would cry. She passed away 3 weeks later due to a really bad stroke, but a few days before that she would still walk around the halls crying and stuff. The sub came back 2 days after she passed, and when he called out the role and the class told him she passed, he left the room immediately. I hope he felt real guilty, because he made her last weeks worse.

[@Lyandra01]

Oh, my gosh! That’s awful! I hope the school implemented some sort of policy to prevent that from ever happening again. The stress she was caused could have influenced the timing of that stroke. 😢

[@dat2ra]

Thank you. My cousin had MS and had recurrent inability to walk. She used to get bad vibes when she'd walk behind her chair like she was pretending. People are sympathetic toward "real" disabilities but intolerant of those who pretend, which some do. Your vid clarifies the situation. Thanks and best to you.

[@EasyCheesy233]

Commenting to boost this in the algorithm. More people need to understand that not all people who need a wheelchair have constant debilitating paraplegia.

[@AllenTax]

Well I am do to brain damage. Front central cortex. Witch was caused by another deadly thing.

[@sweetaudrina_]

@@AllenTaxwhat happened?

[@gravyz2cute4u]

Agreed. I have a friend who usually walks with a cane. She only needs a wheelchair for long distance walking or if she's planning on travelling for long periods of time like around a shopping centre. It allows her to keep up with us and keeps her hands free for shopping, rather than needing to take a seat frequently and tiring herself out.

[@josephdahdouh2725]

That was what I thought was true until this video. I thought at least 99percent of people who used wheelchairs were paralyzed at least in the foot.

[@asterling4]

​@@josephdahdouh2725 think of it like eye glasses. most people who wear glasses take them off sometimes. maybe they can see _some_ things without the glasses, or they can strain really hard to see for a bit. their vision impairment might be minor or severe, and it doesn’t have to be totally disabling for eye glasses to be useful. most disability/mobility aids are like that. if it helps someone get closer to a normal life, then of course they will use it (as long as they can afford it and people don't treat them horribly).

[@Atuchy]

As someone who just bought a cane for the first time yesterday, I needed this video. Yesterday I was struggling to get around so I was so glad to have that cane. Today, I don’t even need it.

[@chosenuwu]

you get whatever you need, bud! i hope youre doing alright :(

[@maidenminnesota1]

Same. I have rheumatoid arthritis and every day is like unwrapping a really bad gift because you don't know what you're going to get, what's going to hurt, what isn't going to function. I needed a cane yesterday because I had been on my feet too long the day before, and my hip was stressed. Today it feels fine (while my hands are swollen and I can't even curl them into a fist to grip anything.)

[@stawklove2990]

What is your pfp? /genq

[@wandat46]

​@@maidenminnesota1I really hate this part of that disease. It's hard to plan anything.

[@alaurahwillow155]

@@wandat46I agree. I have rheumatoid arthritis too and people think because we don’t need mobility devices and support at all times we never need it. Some people can’t get their heads around how conditions fluctuate.

[@KrayZJoy]

Thank you for sharing this. I work in a nursing home, and we have many residents who can walk, but use wheelchairs the majority of the time. Staff gets really upset when they don't use their wheelchair. I feel they need education like listening to you to understand they're not "faking it," and not always in serious danger without the wheelchair.

[@KateLate____]

Apparently 1 in 3 people are disabled. But you wouldn't know it from looking. Let's be nicer to each other.

[@Evil_babies]

Yes

[@Sunghoons-new-Jake]

I actually told someone about this! I don’t use a wheelchair but I remembered this video when they were calling someone a faker for getting out of their wheelchair and I basically said what you said ❤

[@Sunghoons-new-Jake]

@@balusters you shouldn’t have to feel like that love, I’m here for you and I believe that you are worthier of so much more respect then someone being disrespectful to you🤍

[@baumeister5705]

@@balusters don’t compromise your health over other peoples, don’t give them the energy, when you give in the haters win. I want to give you the confidence to say screw everyone

[@Dbb27]

@@balusters you’re here to take care of and love yourself. Not here to please strangers. If anyone comments just respond I have good days and bad days. Do something better with your good health than police others.

[@ladystark1959]

👏🏼

[@Annabeth_Jackson918]

I'm a ambulatory wheelchair user to! I have spina bifita with affects the spine and down hints the name. My legs will often cramp up and tire out quicker and it helps to use a wheelchair!

[@janemarx1321]

Try upright walker. Helps your back more than a low profile walker.

[@Daniel-sy7dz]

Just adding a comment for the almighty algorithm. More people need to see this!

[@iain2080]

I was doing a security gig where I was in charge of the disabled platform and I had to announce that it was for people with disabilities to get people didn't need to be there to leave and watch from somewhere else and to let anyone with an illness or disability know it was for them. When I'd say it people would say they have conditions such as yourself and I'd tell them to go ahead as long as all the wheelchair users were at the front I was happy. Not every condition is visible and people should make the effort to be understanding that conditions aren't static as you said they can be better or worse depending on numerous factors. There was a girl on the platform who could get up and out of her wheelchair and walk for a short bit but she did use it coming in and out of the event as it was a much longer walk to come in or out. Chatted to her dad at one stage and discussed disabled access and the improvements made and places where we still have a long way to go as a society.

[@Galaxygirl1710]

Thanks for sharing your story! I never knew about this before, and now I understand why some wheelchair users can walk still, thanks for the new info :)

[@phalanges3647]

As a disabled person myself, I suggest you check out the cripplepunk community :) it's a good place to learn about people with all different kinds of physical disabilities!

[@penguin22penguin22]

yeah i used to get confused like i saw wheelchair users who could walk

[@92rednotch]

Same here. Random video, but glad I watched it.😊

[@susanplatt5331]

Something else to consider. When you see a person with a disability looking 'well', there's many times when you don't see them because they're 'unwell '.

[@somethinginthenothing]

Thank you for having an open mind and being willing to learn so that we can promote a kinder world. I no longer need a mobility aid, but I did when I was in middle school for complex regional pain syndrome. I had better days than others and could intermittently walk with crutches. I was bullied so much because people thought I was faking.

[@Freelix2000]

I had a friend in college just like this. He had a chronic autoimmune condition and on good days, he could run and jump and move just like anyone, but sometimes he needed a cane or wheelchair. When he was my roommate, I was often running across campus to get his wheelchair and medicine for him when his condition suddenly got worse. It could be triggered by pretty much anything in the air. Sometimes he knew what it was, but other times he had no clue, and each time it pretty much took his legs out of order for the day

[@DAJ2000]

Thank you for taking good care of your friend/roommate.

[@michelleamaris9591]

I was diagnosed with Conversion Disorder last year. I experience the same things, and use a cane or walker sometimes. It never occurred to me to use a wheelchair to save my energy. Thank you for this knowledge!

[@dvf4550]

Conversion Disorder is medical code for "We Don't Have A Clue and Don't Want to Admit It so We Will Say It Is All In Your Head."

[@phillyphakename1255]

It's amazing how something so obvious requires someone pointing it out to you before you realize it. I had the same experience with pacing myself, spoons, energy bank account, etc, someone having to tell me before I really considered it.

[@chloe5707]

Hey, I think you mean ME/CFS. Conversion disorder implies it is psychological but it isn't. Some doctors call it that because they don't believe it is a real physical ailment. It is a neuroautoimmune disease and your mental health getting better won't cure it. Don't let people tell you it's all in your head- it's not! Look into pacing, it helps to stay under threshold so you don't experience post exertional malaise.

[@michelleamaris9591]

@@phillyphakename1255 💕

[@sarasmile4666]

Same. I never leave home without at least a cane or a walker with a seat, because my symptoms often come on suddenly and precipitously. It's hard enough to feel out of control of one's body without being accused of faking or attention seeking when the appearance and severity of obvious symptoms can seem random . Plus, there is always pain and frequent brain fog, which are invisible. Thank you for openly sharing.

[@debstew33]

Energy conservation is so key. Glad you have the tools you need. Thank you for sharing your story- it’s an important perspective that most don’t have or forget.

[@nancykemp4645]

Thank you for educating me on your medical condition so that I can be more understanding of other people's conditions.

[@Littlewindow123]

1 Peter 4:8 Love each other deeply cause love covers over a multitude of sins. Remember to love ppl even if the don’t love you love can do big things❤

[@CAC6363]

But she didn’t educate anyone on her medical condition we have no idea what it is…

[@ryancrawford9894]

⁠@@CAC6363it takes like 2 clicks to get to her bio. She has Tourette’s and FND.

[@jkdonnie23]

​@@CAC6363she explained that she had a chronic illness, you don't need to know anything else mate.

[@CAC6363]

@@jkdonnie23 she doesn’t have a chronic illness besides mental health M8… this is absolutely disgraceful to ppl who are actually disabled. Chronic illness is not a disease it’s a state…

[@christinegolden709]

Excellent! 100% Her explaining how being disabled is a daily challenge. I am also disabled. When I am having symptoms flair ups ,I am down for days. But, the days when I am able to manage my symptoms, I look like any able person. That's the only time people see me. So, they don't think I am really disabled. Having invisible disabilities are hard for the average person to understand. Don't judge the book by it's cover is my motto, until you get to know the person. Humanity for Humanit💜

[@LarsaXL]

Makes sense, it's literally what wheelchairs are for. To help people get around when they need them. Some people need them all the time, some don't.

[@Pebblepancake]

THIS THIS THIS

[@cbrisalchemist6887]

Thank you. I’m in the same boat and people don’t understand when they see me able…and then not. I just started using the electric carts in store rather than “pushing through “ (which was causing massive crashes due to my own fear of judgement. I’m kinder to myself now.🎉

[@harveyabel1500]

And that's how it's done 👌

[@Scottman1981uk]

That’s similar to myself, I would try to power through which causes pain, frustration and leaving so I used the cart and all I worry is people judging me too. ❤

[@lonknight3197]

Just tell people you can do short burst of limited mobility but need the wheelchair for a full days work.

[@__Irene__]

​@lonknight3197 I get what you're trying to say, but I also can imagine how exhausting it would be to explain it to every uneducated person looking at them judgementally. I believe something like this should be taught in school.

[@phillyphakename1255]

You might not NEED need it, but saving the energy can really help you get through the day. Put your energy into doing laundry or working, not pushing a cart around when a motorized cart is right there.

[@ad8397]

Same. I have an invisible illness. If I try to shop for the week’s groceries for my family on my feet I often pass out. I use my wheelchair, peddling along with my feet, which confuses people. Yes, my legs work, but no, I can’t stand/walk for a length of time due to heart rate and blood pressure issues (dysautonomia). I once saw a lady gawking at me when I stood up to grab spaghetti sauce from the top shelf, so I yelled out, “It’s a miracle! She can WALK!!!” before sitting again. Not my finest moment but I gave her what she wanted: a story to tell.

[@Dbb27]

Lmao. Good for you! People should mind their own business.

[@dirtydan9785]

Nah, that was the right move. Hopefully that lady learns to stay in her lane lol

[@eriklagergren7124]

​@@Dbb27jantelagen

[@DAJ2000]

My daughter has a blood disorder and bruises easily. Especially as a toddler learning to walk and pull up on things, she seemed to always have a bruise on her forehead. We always got dirty looks in the grocery store. If someone mentioned it I'd tell them about her disorder. But once this lady just kept glaring at me. So I just ignored her. She actually had the nerve to follow me out to my car and made an obvious show of writing down my license plate number. Nothing ever came of it but geesh!

[@kkilljoy3588]

I also have dysautonomia! Talk about a condition no one understands…..

[@angelastone9109]

Thank you for taking the time to educate others. Understanding leads to empathy. You're a very kind person. God bless you.😊❤

[@simonmasters2772]

Your inner strength 💪 is inspiring, you are one totally awesome human ,thank you for sharing.

[@ManOfTheWeek596]

Best way I know to explain it is with glasses: some people only need them for tasks where they have to see really small details while others need them all the time cause without them they would run into walls

[@bizzzzzzle]

For her though it’s wearing glasses for a mental issue….

[@beckisturgeon8824]

​How exactly is it for a mental issue?

[@5Gburn]

I have 3 pairs of Rx glasses--one for reading, another for distance at night (esp driving), and sunglasses for outdoors daytime. I have to use and carry at least 2 at all times in case of weather change or if I'm out later than I thought I'd be. I have other disabilities, too, but I like your glasses example so I ran with it.

[@Harley_Girl68]

@@bizzzzzzleI’d like a reason you feel it’s mental. Cause when I have a flare or my DIL has one. We could surely use a way to fix it! I hope you have one since you seem to have it figured out.

[@5Gburn]

​@@bizzzzzzleWhat are you on about? Functional Neurological Disorder isn't a mental issue.

[@WADewadewa49]

I've been very ignorant about this. I hadn't thought about people sometimes needing a wheelchair and sometimes not. Thank you for educating me! I feel shameful for how I thought before. Your soul seems very strong and I hope for a wonderful life for you and your loved ones.

[@aperson6968]

I have a back injury that means I can’t walk or stand long. I’ve experienced prejudice for the abilities organization that I had to seek a disabled car marker for. The receptionist was quite blatantly rude telling me there were people who really needed it that couldn’t walk at all. I never got the sticker and have huge anxiety about going again. I no longer shop and am very careful about where I go in public now. Being judgey really harms other people. It’s important to seek to understand and to accept that some things just aren’t your business

[@SatumainenOlento]

Well, you sound like very empathic person ❤ Do not beat yourself too much about it, because not always are even disappled people themselves aware why other disappled person is using a wheel chair when they can still walk. Chronic fatigue is hard to understand for anybody who have not experience it themselves. And I am so glad that you have not ❤😊 Your comment was so sweet ❤❤❤ Thank you for being out there and just being ready to understand 😊 It means much for anybody disappled ❤❤❤

[@user-us6xn5zo3r]

I am 100% behind you, I have an autoimmune disease and thank God I am currently in remission, but there are days where walking is difficult. I spent 7.5 years on 120mg of Prednisone so I could walk. Stay strong.

[@aliciaanhaack6483]

Kudos to you to be able to recognize the need for abilitory aids. I use a walker and motorized wheelchair. I have severe psoriatic and osteoarthritis, which interferes with walking, standing and sitting. It also makes me tire faster than I used to, limiting my ability to just keep going during the day. It’s like the puppy that runs out of energy, my body just runs out of power and I often simply fall asleep where ever I am. Even on the toilet 😮

[@jackpistella5]

Wonderfully explained. My wife is the same. Her second back surgery was considered failed and now she’s permanently disabled. But can walk most of the time. Other days she can’t walk enough to get out of bed. For hours in the morning. Thank you for sharing.

[@rncine]

As an RN(registered nurse) I have patients that look totally normal but have severe inner body problems. Some have heart problems where their ejection fraction (blood that pumps out of heart with oxygen) that is way below 75%, normal is above 90% but they can still ambulate. The thing is to save their strength, park as close to a store etc. Ive had people yell at me when I park in a handicapped parking, mind you I have a handicapped placard, with a patient that looks totally normal. The moral of this story, Don’t Judge a person, till you are in their shoes. BTW, I hope you were tested for Lyme Disease

[@CapComa]

Ok, but why abreviatte registered nurse, if you then have to type it out?

[@rncine]

@@CapComa Some people especially from other countries do not know what RN is

[@CapComa]

@@rncine yeah... just say "registered nurse". Why both? lol It's like if I sent an e-mail, and said "I need this here ASAP (as soon as possible)"

[@rncine]

@@CapComa How about if I say, Get a Life, you are being obnoxious! What are you, in High School?

[@CapComa]

@@rncine You're being rude.

[@williamalexander7481]

I always feel so weird walking or standing when i am in my chair out in public. Thank you for adding visibility.

[@Julia78309]

Congratulations for explaining to people that just don't get it. More awareness of these conditions need to be made. ❤

[@wshazbot62]

Thank you, there’s so many of us with hidden disabilities. The looks I’ve received, used to get to me. But I don’t let them get to me anymore, keep being strong girl 🙏

[@buttercup_bravo]

People really like to minimize the pain of others. It's so strange to me.

[@qryptid]

Many people feel like they can't use mobility aids because they don't need it 100% of the time, but if you need it even 1% of the time, you should use whatever you need to make your life easier. ❤

[@coffeebirdtree]

Thank you for educating people about these hidden disabilities. This is why we should always give people the benefit of the doubt

[@beautifullybroken2458]

I understand this SO much! I have MS and when symptoms flare they can get really bad,from visual issues,needing a cane or wheel chair,and chronic fatigue. It absolutely sucks when ppl see you and think you’re absolutely fine. Not every disability is visible. ❤❤ keep strong love.

[@agnesnagy207]

Same shoes here. Let us stay strong!

[@sarahdoanpeace3623]

I completely and TOTALLY understand this too as a legally disabled woman with several chronic illnesses. I’ve never had to use a wheelchair but I have good days and bad days and more able some days than others. I feel This and I get it. So many do not. I see you. And I thank you for sharing this. Blessings!

[@Dollarkat]

What is “legally disabled”? Are there Illegally disabled people?

[@gidget8717]

​@@Dollarkatin the US there is a disability "board" that determines if you are "legally disable". That means you are eligible for benefits. Not only income help but also things like health coverage and parking tags for the use of handicapped parking.

[@alexiss680]

I have Fibro and it’s so difficult to get out of bed. One task and I am down for a 3 hour nap because the fatigue is so crushing! We all are just trying to do our best !! Be blessed beautiful lady❤

[@ThatAlternativeTransGirl]

My partner was diagnosed with Fibromyalgia at the age of 11, thirty years ago. She has needed many mobility aids along the way. We are currently homeless, living in a shelter where people play music as loud as they're able to all hours of the day. It has caused havoc on her, because the bass from said music pounds through her as far as 250 feet away. She's needed the ER a couple times since we "moved" off the streets in late August. Staff explains this to people daily and they refuse to stop. She's been in a ton of pain the last four days. I've helped her with various tasks in the five months we've been together and it's given me a huge sense of purpose.

[@laurieb3703]

​@@ThatAlternativeTransGirlShe should file for disability and then you guys could get free housing. Or low cost. I'm so deeply sorry you guys are having to deal with that all! I'm praying for you!

[@ThatAlternativeTransGirl]

@@laurieb3703 we are both working on applying for disability. In addition to her having Fibromyalgia, I'm Autistic and Epileptic.

[@user-ru1ki]

​@@ThatAlternativeTransGirlGod bless you for staying with her and supporting her. Why doesn't she get disability pension ?

[@desecrator8979]

Wow..We are DOOMED people. People are so pathetic and weak now.

[@elizabethkoobs1060]

I wish more people understood about invisible disabilities.❤

[@nicoledurrett4595]

Thank you for this post! I feel so validated in regard to the exhaustion. I also use mobility aids as needed. I'm 42, but look much younger, and I get odd looks in public when I need to use my cane or rollator or the electric scooter carts at the grocery store. I've begun avoiding zoo trips, etc, because the exhaustion afterwards is untenable

[@0kittykruger0]

I really, sincerely appreciate you talking about fatigue as a reason to use an aid. Between my own chronic illness and the harsh medication for it, the fatigue often hits me hard. My therapist had to drill into my head that going 100% every single day just to not even achieve what my peers can do was not going to fix it, and that it's okay to not give 100% every single day if you're saving up energy for tomorrow and/or letting yourself rest to prevent burnout and/or using the aids available to you to make whatever % you do give more doable. It's definitely one of those things that is so invisible no one takes it seriously, sometimes even myself in an effort to be like my peers. So seeing you mention that as a reason to use an aid honestly makes me feel so much less alone, thank you. ❤

[@phillyphakename1255]

My fatigue isn't severe enough to use mobility aids, but it was a big change in life when I realized that my energy levels are like a bank account. I could start to live intentionally, choosing what I want to do, what I need to do, and actively managing that. Sure, I can go to the football game, I can have fun with friends, but I also know that I can't plan anything significant on the preceding or proceeding day. And of course a bit of seasonal and daily variations thrown in there to spice things up. Maybe just go to the game instead of the tailgate and the game, or even just go for a half if you are having a bad day. Spend 30 minutes chatting with family at Thanksgiving instead of hours. It'll make you more successful overall.

[@Dbb27]

@@phillyphakename1255 excellent advice. I try to drill into my family member to pace themselves. Im going to use your bank account analogy.

[@SatumainenOlento]

​@@phillyphakename1255 This was good analogy! ❤😊

[@PARoth2011]

Oh you sweet, darling young woman. As someone old enough to be your gran, I am so proud of you for saying the things that people with hidden chronic illnesses must struggle through. My own family is the worst at understanding and the most critical but when you get older, you don’t care anymore because very kind friends become like family. I don’t have to use a wheel chair, but when I overdo things my flares can put me right in bed. After many years these flares are down to a few hours, maybe a day or two because I’m so careful with food, stress and exercise. Wishing you strength and happiness and of course a reduction in symptoms. You are very brave, beautiful and wise. ❤❤❤

[@undeadondine1977]

Amen! I've been an ambulatory wheelchair user for over 15 years now. I am disabled from several genetic, chronic illnesses. I know how frustrating it can be! Thank you so much for making and sharing this video; I cannot express how much it means to me, and probably to at least 225K others (😉).👍💖

[@dominihunter3585]

Strong girl 💪❤ whatever it is your disability seems to also affect your respiratory as well. I'm glad to see that you don't let any of it get you down and you keep going sweetheart. Many blessings always.

[@restojon1]

I hear you. I'm many years into my disability and still can't accept that this is what I need to do. I've had Cauda Equina Syndrome twice and have very bad spinal cord damage. I won't go into all the details but, you know, spinal cord injuries. I "can" walk and have good days, but I pay the price, my family pays more... You're a stronger human than I am and I congratulate you for it.

[@erinjordon829]

The "my family pays more" is so real. I was going through a similar situation when my mom got heart and lung damage from a surgery that went wrong. She almost died (coded for a min) and didn't wake up for 3 days after. So, needless to say, it took years for her to recover. But because she didn't "look sick" people would try to push her past her ability levels and me and my dad became the bad guys because we'd always tell people no, she needs to rest. She's better now at understanding her limits, and it has really improved her health. Just remember who is around to take care of you when you push too hard for other people. If they won't be there, it's not worth it, your health is more important.

[@user-io9ie5cs8j]

I'm disabled too, and I have good and bad days

[@asterling4]

​@@erinjordon829 as the wife of a severely disabled woman, your point about family "being the bad guys" hits close to home. i was prepared to become a caretaker in many ways, but that one surprised me... it's almost my main job in looking out for her. telling people _no._ being firm (polite, but firm, and impolite if i _have_ to be) when she can't manage the strength. that, and fighting skeptical GPs who don't know what they're talking about so we can see the goddamn specialist who _does_ know what they're talking about and can actually help her.

[@erinjordon829]

@asterling4 being a caretaker is something I have the utmost respect for now. After what happened to my mom I know not everyone is cut out for it but it takes so much love and patience ❤️ best wishes to your loved one!

[@ian1701e]

Thank you so much for showing this side of chronic illnesses and disabilities. On great days, I can climb mountains that reach far as 2km or higher, on worst days, I can't leave my bathroom due to constant diarrhea. I have what is called Short Bowel Syndrome. Most days, I do not look "sick".

[@malia6751]

I completely relate although I’m trying so hard to reach one of your “great days”. I was diagnosed with Chronic IBS and Chron’s disease this year at only 19. It seems like my life is over before it started. There’s so many expectations and pressures for people my age and it gets the best of me most days. The chronic fatigue and anemia caused by my condition is debilitating on my bad days. However, I’ve gotten to a point where small victories have helped me get through my day. On my good days, I’m able to go shopping or hang out with friends; which is a long way from where I started! I remember when I used to live at the gym, and I’m trying really hard to fight to have my old self back. Anyways, beside the rant, my point was that I completely understand basically living on the toilet lol, it’s really hard sometimes but please know you’re never alone and if you need anyone to talk to, there’s tons of support groups!! Keep fighting strong and best wishes :)

[@misspatvandriverlady7555]

@@malia6751When I talk to the 16 year old girl with cerebral palsy I’ve been driving to and from school off and on since she was 10, I refer to it as having a “non-standard body”. Young people are indeed expected to have tons of strength and energy and rarely feel pain; for many, though, this just isn’t the case! 🤷‍♀️

[@cyndriay1551]

Thanks for bringing this out. It is this way for me & my children. People don’t get that one day your walking fine look “normal” but next day your legs are heavy severe pain all over dizzy so fatigued you feel like your going to fall over but you still look “normal” & my children have an added neurological condition where their vision & hearing can also be affected along with a possible suicidal migraine. Chronic illnesses suck !

[@louellamitchell5211]

Young lady you do not have to explain to me. GOD Bless you.I appreciate you.

[@animal_cookie]

Ever-changing chronic illness is something that's so counterintuitive to what we learn about disabilities in society. When I was flaring, I thought I was going to dislocated my knee from just standing up. A few months later, I was climbing mountains. Sometimes I will take work from home days so that I have enough energy to enjoy my weekend. Needing aids to live a full life is absolutely fine

[@dianahernandez-hh6sp]

I feel this as someone who has a auto immune. 😢 People judge just because they can't physically see it. What they dont see is the suffering and strain I'm enduring just to appear fine.

[@doracotterell2863]

This is explanation is awesome and made even more so coming from such a charming & sincere lady. ✨💖✨ Thanks so very much!

[@christesta2521]

Do what you need to Zara to keep yourself strong noatter what the aid is. Thanks for sharing and what a nice voice you have.

[@Svenja_Schaefer]

Thank you for spreading awareness and compassion. Many illnesses aren't equally bad all the time. I wish you mental strength and happy moments! 🎐

[@7557adam]

I didnt know that someones symptoms could range from being able to do gymnastics to having to use a wheelchair. That must feel so frustrating. Thank you for educating i hope you are well

[@Treewithmoss]

You should look up spoon theory I have hEDS so every day I wake up with a different level of ability. I was a professional dancer and had to stop bc one day I could be dancing for 10 hours but the next day I couldn’t walk. It’s very fun. I can’t make definitive plans bc I only know the morning of if I am physically able to do it. The other girlies with the same problem have mobility aids and wheelchairs but I was never allowed to have one so I would just get pushed around in a wheelie chair at school lol

[@WakeupAmerica777]

Auto immune diseases like rheumatoid arthritis and fibromyalgia can be severe with flare ups. Blessings!

[@pipermaisiemae1999]

❤❤❤❤ thank you for being open-minded enough to understand

[@Msviolet65]

I too am disabled. I have good days where I get around just fine. Then there are the other days! I use a cane for shorter distances and I have a walker with a seat when I have further to go. Whenever I travel via airplanes I require a wheelchair. There is no way I can manage an airport without one. I wish more people could understand this. I enjoy doing yoga so I understand the joy dancing can bring you.

[@allisonkrueger8330]

@@Treewithmoss That’s not right that you weren’t allowed the things that would’ve helped you out, at least some of the people who had the same issue loaned their chair to you.

[@Bob-Horse]

Thank you for helping to raise awareness about hidden disabilities. I have a similar condition and people look at me and think I look fully healthy, but they only see me at my best. They don’t see me on most of the days where I can barely do anything, often having to be in bed most of a day through my chronic illness/disability, chronic pain, chronic fatigue etc. However, I’m lucky I don’t need to use a wheelchair, I just do what I can do each day as it comes, living one day at a time and I can never plan for things. I keep fighting it each day though and do the best I can.🙏🏻

[@cosmicray8172]

Being an ambulatory wheelchair user is great because if someone tells you "why you're using a wheelchair/you don't need a wheelchair" you have functioning legs to kick them with

[@caroljo420]

I have a hidden disability, too. Some days are better than others. Don't let anyone give you a hard time about it. Know that you're the only one who knows how you feel, and know that you're loved! ❤

[@gloriaanngomez3238]

You are so sweet😊🫶🏻

[@MJ-gj6mj]

Honestly, this comment was just what I needed. It's much easier to feel sorry for ourselves and invisible to others. Nobody feels what we have going on inside but it's important to feel love. ❤

[@R4ts_]

Your voice is super comfortable to listen to :)

[@user-vz7ls5qm5c]

Very true. It could be a great career for you and even self paced like you need. A 67 yo Grandma in a similar boat. Just without the beautiful voice!😁. Blessings for you Sweetheart. Keep speaking out. 💕👍✌️🌹🙏🏼

[@hilowkitty]

❤❤❤ it’s frustrating that folks don’t understand disability as a spectrum even within the same person on the same day. Thank you for educating others ❤

[@ninjabgwriter]

For a lot of disabilites, prevention/saving your energy is half the battle. I'm autistic, and if I know I have to go to an appointment later in the day, or go someplace very overwhelming for me, I do a lot of things to start off in the least overwhelmed state I can be. I CAN go to the mall without having a visible meltdown due to sensory overload, certainly. Even after an average day where I don't do any special accommodations for myself... but I will crash really hard and struggle to do bare minimum tasks like feed myself or handle the noise of the air conditioner for several days afterwards, and probably be struggling not to hyperventilate and cry as soon as I get in the car. But I can FUNCTION much better at the mall if I have a lighter day beforehand and bring a ton of sensory aids like headphones and fidget toys to stave off being overwhelmed for as long as possible. I can recover much more easily if I take care of myself, and if I crash at all, it's not as bad or as long. Same with physical disabilities. Just because you are technically capable of doing something all the time, doesn't mean it's the best or healthiest option to do so. For a lot of abled people, they tend to assume the best option for a disabled person is the one closest to the way they can do things, and usually I don't think this is out of malice. They just think that of course someone would like to be able to walk somewhere, that they would use a wheelchair only when physically forced to. It's a pretty hard mindset to get out of as a disabled person, that you should only take accommodations when you have no other choice because doing stuff unaided is 'better', but it leaves you constantly running on nearly empty and barely scraping by. If you can do the same thing in the same way as everyone else with extreme difficulty and effort, or the same thing in a different way much easier, take the easier way. As disabled people, just bare minimum life is challenging. Accommodations are literally the line between surviving and thriving for us, and the first people who need to accommodate us is ourselves. If I own headphones for sensory overload and don't use them at the store because I'm worried I'll somehow 'take something from someone else', or someone doesn't use their wheelchair they already own for the same reason, all it does is impose an additional unnecessary challenge on our already challenging lives. It is valid to take help you don't 'need' as a disabled person if it still improves your quality of life and makes you able to function more easily. You are not cheating, your hard work does not count for less because you were assisted, and frankly you deserve a break. Hope everyone has a great day, stay safe out there everyone!

[@Official_Ziv]

THANK YOU FOR EXPLAINING THIS So many people don’t rlly understand :/

[@vitoasaro4663]

She has a beautiful soul. Seems like a very pleasant person to be around.

[@JaKingScomez]

Shes weird

[@cjxo8432]

@@JaKingScomezgo touch grass

[@sebcalabro6252]

​@@JaKingScomezyou're weird for feeling the need to say that

[@cc8879]

​@@JaKingScomez okay, guy who's name sounds like hes jacking someone off named Scomez

[@ilenhalogram]

Thank you - I have similar issues and it’s very difficult to interact with others “judgments” - we hope for many good days but when we have bad days it’s not a choice it’s not laziness- it’s a reality that would be easier if others just accepted that. 💖💖💖 I also get partial paralysis weakness tremors and fatigue - my issues are from TBI but there are many conditions people have - that there is no “cure” for that are not obvious to others. It’s surprising how much other able bodies people distrust the realities of chronic illnesses. Adds to the already difficult scenario - what helps is being accepting understanding and accommodating 💖

[@tmwoltz226]

God Bless you! I have MS and you just put into words all that I'm fighting.

[@Jon_Stein]

Thank you for sharing AND THE education. You are appreciated

[@jmw939]

I remember that stage of MS. So reluctant to use my wheelchair or walker, yet so glad I did. You’ve expressed that feeling, and educated others as well. Thank you, and stay strong!

[@OonaNymn]

Well... newer studies on MS show that the more movement the better... so training every day is good, training just up to the moment you start sweating can help MS patients alot! If you have Uthoff Phenomenon and its hot and sunny where you live, a wheelchair or walking aid, may actually help you regulate your body, but if you use a wheelchair because you feel fatigued or tired and therefore are using your muscles even less, then you will end up in a wheelchair full time way faster... even if the ms patient feels fatigued and tired, moderate exersice or even better: constant movement is adviced! So going on slow walks for hours is good, if you get rest in between on benches, and exersice which is a bit exhausting is good as well! And necessary so your body can activate healing processes of nerves, through better bloodflow. This is whaf neurorehabilitation therapists learn currently

[@emilygilbeyful]

@@OonaNymn the reasons for a person with MS using a wheelchair are so many sadly. I'm not sure this is a universal recommended, most people with multiple sclerosis want to be as mobile as possible and avoid becoming wheelchair bound so saying do everything you can to avoid using a wheelchair isn't really helpful as it kind of goes without saying! Drop foot, balance issues, vertigo, spasms or paralysis is any or every possible muscle, pins and needles or numbness in feet and hands can make walking or using crutches difficult as can double vision etc. my mum is 62 and I wish she'd use a wheelchair or mobility scooter more as she would have avoided three terrible falls, and spending years not living life to the fullest by staying home letting life pass her by as she couldn't manage to walk far.

[@conorstewart2214]

@@OonaNymn there is a difference between using a wheelchair all the time or just when you need it. If their condition is particularly bad at a time then pushing through it is not going to help, it will just mean they take longer to recover. So what these newer studies propose isn’t exclusive, you can still use your body as much as possible but then use a wheelchair when you need it.

[@usagi_t]

@@OonaNymn Hm... I don't know, MS is caused because of damaged neurons not muscles. You can bulk hard, but when the nervous system fails it is not much use.

[@RebelRed]

@@usagi_tno one knows exactly what MS is or what causes it - many believe it to be psychological / mental health / personality disorder

[@lynnbarker1019]

Omg Sweetheart. 😢 I am so glad that you are able to make the most out of your good days. It does help keep your spirits up. Not to mention your strength. Good for you little Bunny. Keep up the amazing fight ❤

[@sandeesimons6045]

Bless you Dear! You are so knowledgeable and thank you for taking the time to educate us. Hugs from California, United States 😊

[@fabulousinflorida]

Thank you for sharing this!❤ I deal with this myself b/c of my severe spinal disease. Some days I can walk fine but others my pain requires the assistance of mobility aids. This is an often misunderstood situation for me, you and so many others. Blessings and pain-free days to you, love!🫶

[@Tom-hz9oc]

Thank you for posting this! I’ve had 5 strokes, but they really didn’t affect my motor skills. Other than not really feeling my left side, I’m pretty much ok. My problems are neurological. People need to understand that not all disabilities are visible.

[@DonaldAJr]

This woman is beautiful. Seriously I wish I could still walk. But life goes on.

[@PossiblyBean]

Normalize the "in between" of disabilities 🗣 something i realized is when people learn that i have cerebral palsy they either see it as im like completely disabled OR they see me as completely able bodied and im "not disabled" or "im faking it" when its neither of those. Its like people dont think there is an in between those two sides.

[@markcollins9129]

Thank you for sharing this. I have found this for myself living with a severe form of fibromyalgia. It's great to hear about your self awareness.

[@bustercolin7507]

What's your treatment for it?. Ive not long been diagnosed with the same.

[@mooltz]

​@@bustercolin7507find the actual cause, fibromyalgia is just a symptom. What is causing the muscle pain? Find out, and treat that. Doctors diagnosing people with a symptom are taking the lazy route.

[@mr.upcycle9589]

​@@bustercolin7507It's usually a nutrient deficiency. Most likely magnesium.

[@bustercolin7507]

@@mr.upcycle9589 Wow. Never heard that from anyone I've seen about it. I'll take a look at that before I go to pain management. Cheers.

[@gritmakaveli]

​@@mr.upcycle9589low magnesium isn't the sole cause of fibro lmao if that were the case, no one would have fibro because all they'd have to do is take mag. Fkn chode.

[@maryshannon3326]

Thank you for sharing this! There are so many people who don't understand that many disabilities are invisible to others. They don't understand how much some people struggle.

[@sallypea3202]

I am invisible disabled and had a woman comment about how long it took me to rise from a chair. I know she didn’t mean to but it hurts to have that pointed out. I know I’m slow I have a muscle disease that so rare the Mayo Clinic is struggling to diagnose me!! Thanks for sharing! We stand in solidarity because being disabled sucks and I should know!

[@silkroad1201]

They understand fine, but they don't care. Life is hard enough dealing with your own problems, let alone having to care about someone else's "problems". I can give you my regards, be understanding and not do anything to hinder you, but I won't go out of my way to considsr everyone's needs but my own. I would go nowhere in life if I did

[@sallypea3202]

@@silkroad1201 If I can muster care and compassion for others what makes you so hard and mean!

[@zaynamoore]

@@sallypea3202 I think what "silkroad" is saying is valid. People don't care really and much of the fear of being judged is a side effect of learning to accept and cope with our own disability. Disinterest is not hard nor mean.

[@asterling4]

​@@silkroad1201 ...there are people who go out of their way to tell ambulatory wheelchair users they're faking, give them nasty looks, make them feel bad, gossip about them etc. it costs $0 to not do that. your philosophy is... fine (if incredibly lonely) but it's totally irrelevant to the discussion ngl

[@user-hj6bp5sw3x]

Thank you for sharing your story. There are so many variations to disabilities. I have MS and know that keeping your health and energy in balance is everything.🙏🏻

[@tegsxx4020]

Thanks for bringing awareness for invisible disabilities. I have uncontrolled epilepsy and a benign brain tumour (it's location affects my balance and ability to use my legs and hands on my right side at random times). I've been yelled at for sitting in a disabled spot on a bus and for using my disabled bus pass as I look able bodied. They don't see my crutches at home and my bathroom with handrails and safety equipment or my crockery that are plastic to stop breaking everything.

[@khart5453]

Thank you so much for putting this out there! I have MS and go through the same problems. I know people look at me funny seeing me walk sometimes. I know they don’t understand but it still makes me feel bad…

[@K1k1Cupcake]

Same for me ❤️‍🩹

[@katiemccormick8846]

Same here.

[@haleyhoudini]

I'm similar, but I use a cane during my flares. People respond to me with a strange mix of pity, concern, and distrust because some of the people that I see often enough to know that I can walk but not often enough to know that I have an autoimmune disease look at me like they're really confused. They just saw me a couple days ago and I was talking about hiking, and now I'm hobbling with a cane? I must be lying! 🙃 But honestly it doesn't really bother me, I've been trying to save up money for some fancy custom carved canes with like maybe my dog's face on it or a dragon. My boyfriend is very supportive, and says that my cane makes me look distinguished and noble, which is exactly the right reaction for a partner to have ❤

[@ericakusske3321]

I have Ehlers-Danlos. I LOVE taking our blue heeler to hike trails, on the days that I can. Yesterday my right knee was wobbly, today my left ankle keeps trying to roll. It's a cane day. And that's ok. Me not falling is more important than anyone's opinion of me.

[@Cosmic-Cat.]

Same. When I'm at the fruit shop though I stand up and walk a bit, as it's hard to get in between the tiny aisles. I have a carer with me who helps mind the wheelchair and quickly gets me to sit down if I'm exhausted. I used to feel a fraud, but no-one else is living my life.. Learning to love and care for myself! 🌹

[@jasonjones1581]

As someone that experiences this as well, I appreciate your putting yourself out there. The struggle is real and most people will never understand.

[@yugandali]

Thank you for posting. So many of us do not know about this, it’s outside our experience, so we need voices to explain to us so we can understand.

[@tinythebulldog4552]

Beautiful girl who is so honest and open...grateful for your posts.

[@metalcorgi1959]

those hiccups were adorable lol

[@edsutherland8266]

I really like your videos, I’ve got fibromyalgia, and it’s been a rocky journey. I first got symptoms when I was about 18-19, and it worsened quite quickly. I was using crutches most of the time for about nine years, then gradually was able to walk more. Now twenty years later (I’m 39 now), after seven years without using crutches, my health is getting worse again. It’s great to see someone bringing more attention to it, especially since there really wasn’t much out there back when I was first going through it. Keep up the good fight!