Living with Hypermobile Ehlers Danlos Syndrome + Our Mobility Aids ft. Martina

Now watch Martina's Video! → • Babes with Mobility Ai...
Subscribe to @eatyourkimchi: / simonandmartina
Being chronically ill/disabled can be an extremely isolating experience, especially when you're young and it seems like everyone around you is able to work 9-5 jobs, go to the gym, go out partying and STILL never feel as tired as you do, even when all you've done is lay in bed all day! Something that can be REALLY helpful in alleviating symptoms/keeping you safe/lett you get outside your home are ~Mobility Aids~! They're wonderful inventions that help us live our best lives! But it can also be tough getting past the stigma of being a young person who needs to use them. Because from the very first moment - looking through different mobility aid companies, trying to find the best one for yourself - who are the advertisements aimed at? Usually the people in the product advertisements are at least 70 years old 👵🏼 This only makes you feel even more isolated when you're a young person who needs a mobility aid!
So myself and Martina, as we are both chronically (ch)ill mobility aid users, wanted to sit down and chat about our experiences, our different mobility aids and how we incorporate them into our everyday lives, and to help anyone else out there who is also young and needs to use a mobility aid, but maybe feels a bit scared about doing so. Or maybe you're chronically ill and haven't even thought you'd be "allowed" to use one, because you've never seen a younger person do so! Let's break down some stigmas, okay?
💖♿️💖
The hashtags mentioned in the video are:
#BabeWithAMobilityAid
/ babewithamobilityaid
#BuildALadder
/ buildaladder
Annika posts a lot about chronic illness, mobility aids and disability on her Instagram page:
@littlepineneedle
/ littlepineneedle
Follow Martina on instagram:
@eatyourkimchi
/ eatyourkimchi
**** SUPPORT ANNIKA'S VIDEOS ****
👕 Merchandise: bit.ly/2mVRYbv
🔸 Patreon! / annikavictoria
☕️ Buy me a coffee: ko-fi.com/annikavictoria ☕️
🎵 Podcast: www.annikavictoria.com/podcast 🎵
******* MY PATREON SUPPORTERS ********
✂︎ Please support these wonderful small businesses who support my channel! ✂︎
Thrifted Thrills
www.etsy.com/au/shop/ThriftedT...
Oz Yarn
www.ozyarn.com.au/
Special, huge thanks to these brilliant humans (my Patreon Producers!)↓
Alexandra Evans, Alyssa Sohns, Annie, Beastmen Manor, Bernice Yu, Bert Nielson, Calvin Coombs, Cassie Schreiber, Elaine Grigg Dean, eli, Ellen Randerz, Ellie Noyes, JackayCruz on Depop, Jennifer Getter, Jennifer Lewis, Jennifer Liu, Kathryn Jones, Laura East, Maggie Vincent, Mandy Holland, Marie Minet, Mum & Dad, Rebecca E. Webber, Sarah Zaranek, Shaun Goudy, thunderlizard 💖
*******
CREDITS
MUSIC
Epidemic Sound
Outdoor filming by Simon :)
*******
CAMERA: Canon Powershot G7X Mark ii
Microphone: Zoom H5 recorder
Editing software: Final Cut Pro 10
Sewing Machine: Bernina B 335
*******
Find me elsewhere on the internet!
► WEBSITE www.annikavictoria.com
► MERCH store.dftba.com/collections/a...
► INSTAGRAM / littlepineneedle
► TWITTER / annikavictoria_
► FACEBOOK / annikavictoria
► PATREON / annikavictoria
► KO-FI www.ko-fi.com/annikavictoria
► PODCAST www.annikavictoria.com/podcast

[@RamblingofaBabyDino]

One day a lady says to me "What did you do?!" In the pharmacy like just assuming that if I have a condition and I'm young that it must be my fault that I caused an injury. I was so tired and sad that day, I just screamed back at her "I HAVE A DISEASE!" And she just stood there with her mouth open (along with everyone else). I don't know, somedays I just can't deal with people.

[@MirageEspejismo]

#relatable

[@xovaleriaff]

omg so sorry that happened to you, that makes me so sad that people instantly jump to judge. But you're so strong, and there will always be more people who support you

[@yopi_yopi]

Yup same, they think I was a wild younging who broke a leg but no, I'm a peaceful person who feels like I'm 70 because of chronic illnesses. People are the ones in denial.

[@DayanaraDays]

Humans are garbage creatures.

[@katyb2793]

aww.. I broke my a few years ago and ppl said that. and was like, why would I deliberately hurt myself? this isn't fun. how much worse when it's a chronic condition..

[@rayanagi]

I hope mobility aid companies take note. Even if you are "older" there is no reason why your cane, frame, walker, rollator or chair can't be pretty or fun. Also, a few more youthful and fun models for the ads would be nice too. 😊

[@michimelody4036]

Walgreens actually has some really cute canes. Not sure you have them in your country but I saw one that was black and had really pretty silver spirals going down it had the foam like hook handle. They don't have just plain canes in there. They also have different handle grips. They are listed I think as fashion canes lol. I worked there for 5 years. Haven't been an employee for 10 but still shop there. They have an online shop though.

[@DieAlteistwiederda]

I talked about that with a couple of people now and nobody really gets why all aids have to be beige, boring silver and sometimes black. I will probably either need a cane or walker in the future and I already know that I want a bright green metallic paint job because that's just my favorite color.

[@ladyxanthar8747]

I think the problem is the saleability. For the same reason most cars are boring colours.

[@ratticus]

My canes are adjusutable black x 2, and polished wood and brass. I love the last one of them most, and it's the least practical one so sees the least use :(

[@joannetiffany8047]

I wish they would just create custom made aids. Everyone is unique and has there own likes. Also though haven't people noticed the stuff people need for a disability, illness or rehabilitation is always 10x expensive than the normal stuff.

[@korynnininm]

I'm 19 and I have early arthritis and it's always so fun to hear "your too young for that!" WHY THANK YOU YOU HAVE CURED ME MY BONES NO LONGER HATE ME

[@emjenkins464]

Same. I'm 17 and actually had arthritis confirmed on my 17th birthday after months of "it's just vitamin D deficiency and tenditis from exams". I'm on biologics now, but as they're immunosuppressive I'm having to prepare to self isolate if UK schools don't close

[@korynnininm]

I was on stuff for it (my ADHD ass can't remember) but I don't have health insurance anymore so I just take a lot of ibuprofen and Tylenol

[@VampyricDeth]

Fuck I hate it when people say that. 🙄🙄🙄

[@broganmckoko]

I've had Juvenile Rheumatoid Arthritis since I was 2. Yes 2. That's over 40 years now. Back in the 70s they didn't have very many Medical Treatments for children so I ended up with a lot of extreme joint contractures and joint damage. I remain independent only out of sheer stubbornness. And yeah I heard the " you're too old for that" all my life. My answer is I was the perfect age because I was too young to become cynical, frightens or bitter. Instead I embraced it with creativity and determination. I end up teaching people nothing is impossible. Some things just take longer or require a different route.

[@eatyourkimchi]

Heck yes! It took us all summer and nearly all winter but we finally posted our videos up...IN UNION!!! :)

[@AnnikaVictoria24]

Well, that's basically a month when you run on spoonie-time, right? So YEAH! WE DID IT! 🤜🤛

[@zegobou]

Did you film this in Japan?

[@AnnikaVictoria24]

@@zegobou yeah :) it's at their house, we filmed back in May 2019 when I was living in Tokyo for 3 months:)

[@cherade99]

I have along list of chronic illnesses and disabilities, some from birth and some acquired. Neurological, psychological, emotional and physiological, yay me! Being immuno-compromised at the moment here in Scotland means never going outside, as well as my husband and son having to be super careful about their hand hygiene. It's not a fun time.

[@mygirlcheech85]

Aweee i love looking AT BUG'S OUTSIDE

[@mosswhimsy]

Thanks for talking about this ladies. Because of stigma, my partner was so resistant to getting a cane to help him with his balance, but we found him a lovely second hand brass goose-headed cane and it completely changed his life. We call it 'the goose' and that helps a lot to not draw attention to it out in public, but also mentally creates a positive relationship with the use of his mobility aid. Plus it's super heckin rad.

[@LoveKonkon]

Omg i wouldve loved a goose cane but i didnt want to look 'stupid' or be judged since i was 21 at the time.

[@firstcanonkill1767]

@@LoveKonkon some goose canes are quite a 'cute' style, i say go for it ! im buying one with cats all over it do what you want, people don't often stare at your cane in fear of being impolite.

[@SpyralStormTeacup]

I have issues similar w/ mobility aids, but had this awesome, old dragon cane I found tossed in the trash that was so ornate and cool!! It was a little chipped, but it was lightweight, just the right height and the handle was the best fit I'd experienced PLUS the dragon's head. 🐲 Not only did it feel like my cane was my buddy, but I could travel with him on my back all around the city, which as a female too my dude friends would say it looked like I was traveling with a battle axe or ninja gear. I'd be like, "no that's my cane" but I am also a years-seasoned colorguard and can't deny my walking aid is totally like having my dragon guardian or familiar🐉🐲❤!

[@MocknozzieRiver]

I feel like as a person without any disabilities, watching these videos is good for me because now I see someone in a wheelchair or using some other aid, and I literally think nothing of it anymore. I mean, I notice it, of course, but I don't wonder what the reason is or anything at all.

[@SecretFiri]

And now, I want you two to have a collab with Jessica Kellgren-Fozard.

[@AnnikaVictoria24]

DREAM TEAM

[@orionliketheconstellation3003]

I would love to see this!

[@VampyricDeth]

I would scream

[@nickreynolds9745]

shed love you

[@Taradoxxi]

As a fashion student with an invisible disability of my own, I have a serious interest in accessible design-I am so so excited you made this collaboration!

[@nikkigriffin6441]

In case anyone was totally confused when she said “who has the spoons for that?”. She referencing the spoon theory. The spoon theory is a way to illustrate the reality of living with chronic fatigue. It’s more a thought experiment or an analogy. I suggest you google it cause I could never do it justice. I do recommend Jessica’s video where she further illustrates by playing the sims in conjunction.

[@8jerasikapark8]

Jessica who?

[@firegodessreiko]

It's actually not that great an analogy either as it gives people without chronic illness that 'spoons' can be stored up as extra or that you can somehow obtain more 'spoons' on any given day when this is not the case. I've read a few better ones, but bottom line is, you really don't have to make excuses or justify yourself to anyone. No means no and if you don't feel up for something despite your best efforts, that needs to be okay. Surround yourself with folks that understand that, and learn not to take it too personally with strangers that don't.

[@nikkigriffin6441]

That One Lady Jessica Kellgren-Fozard.

[@cherade99]

@@firegodessreiko Spoons can be saved up to a small extent for some of us. It entirely depends of the condition or the person.

[@o0Avalon0o]

I have to start using a cane again & some gossipy acquaintances started grilling me. I was patient with the empty smiles until they started asking for my medications & their spelling, like it was some test. I made it clear that they can freely educate themselves online but I'd like to talk about other things since my condition can be depressing. It took repeating, but they got the message.

[@SquidFiction]

o0Avalon0o god yeah, having people in your life who seem to only want to talk about your condition most of the time can be bloody exhausting!

[@katyb2793]

😲 um that's quite rude asking about your meds...

[@AnnikaVictoria24]

What on earth.... how bloody intrusive can some people be?? I have a friend who says she's going to start asking people "when did you last have sex?" when they are intrusive like that, to make it clear how utterly rude they are being haha.

[@queenVivi1]

You need to drop those people as a acquaintances. It’s okay to ask questions but not test someone to see if they’re lying about a disability or chronic illness.

[@TheMazinoz]

@@queenVivi1 Pretty much what I was going to say. But in this instance at this point in time I'd be very much inclined to tell them to "just f. k OFF!. "

[@N0pleaseN0]

When I'm using a wheelchair, sometimes I feel like an object... People will push me without asking if I'm in their way in a supermarket for example. They don't get why it so rude! Would you pick me up to move me if I was standing up? Would you touch my legs? Would you shove me if I had my cane instead of my wheelchair? Now I always put a jacket over the handles, or a bag and if people touch I turn around and ask if they're trying to steal.

[@grosebud4721]

ダニエル遠藤乃惠海 that’s so insane! I would just walk around, go to a different aisle (social anxiety lol), or even just ask if you could move over a bit! It *would* make you feel like an object if people just moved you out of the way like that!

[@endangeredidiot864]

Reading this bubbled some anger in me. Can only imagine your frustration.

[@LoveShelbylee]

Strangers push your wheelchair?!?!??!?!?! Wtf is wrong with people! Let's disregard that we are taught as children not to put our hands on others, but do they not even think about the possibility of hurting you?????

[@buzzlightyearandco]

WTF I would never touch a stranger's wheelchair

[@pyamol5052]

As a wheelie person myself, I love that idea and am going to start using it

[@audreylandreville6785]

That "build a ladder" thing is really great, and it's nice to see I'm not the only one to see it that way. Honestly, it's kind of the mindset I try to be in when I'm in the darkest days of my depression. Like, good job, you took a shower ! You got out of bed ! You went out, even for five minutes ! All the little accomplishements matter.

[@courtneyfurman7453]

Me (disabled person) 2 seconds into build-a-ladder description: oh this is cheesy Me 2 more seconds in: sobbing like a baby (gets hit home so hard) ... def needed that reminder thanks!

[@KrazyKirby15]

I wish the "Not all disabilities are visible" was a enamel pin! It really describes my fibromyalgia!

[@rozharris6834]

I would love a pin version too!

[@firegodessreiko]

Facts

[@AnnikaVictoria24]

I'll try and make it a pin one day!!!

[@KrazyKirby15]

@@AnnikaVictoria24 that would amazing!

[@theostheories6548]

I’ve got pots so I’m going to maybe start using a walker soon. I’m 14

[@hannahofhorror]

Sickness behaviour is a real thing friends. If any of us had these issues acutely, our bodies would be begging us to stay in bed until we recovered. To me, it makes total sense that for a chronic condition, my body is still like “don’t get out of bed, don’t socialise, don’t shower”. Any day that I do any of those things is an achievement, and the days I don’t are totally justified.

[@legendarymudkip2096]

As an able bodied human being, this is very informative and it makes me feel like i'm starting to grasp a better understanding of folks who are not like me

[@AM-os4ty]

Oh good grief.

[@yopi_yopi]

It infuriates me how people STILL doubt me when using a cane. They bump into me, get pissy that I walk too slowly, look at me all the time from wearing dresses and having a cane for some reasons, tell me it's ok I'm young, make shocked faces when I stand up from a wheelchair in the airport as if I was miraculously cured or just lying. People are so noisy and misinformed. And even if they were just ignorant, they don't have to make this harder for us. Before i became disabled I never cared about disabled ppl, I didn't bother them nor even stared. It was common sense to me to not act condescending.

[@k.c.2213]

"If you don't smile, you cry." Wordddd 👏👏👏

[@davidlove236]

I totally smiled at the brain fog moment. I have them often enough that I don’t even try to explain them to people anymore. Thank you for the recap of “build a ladder”. This has been a great collab with you two! Thank you for doing it!

[@dracoharrylover1]

Does anyone else deal with people forgetting about your illness even after telling them? I have a chronic autoimmune condition that isn’t visible and I don’t like to talk about so when I do open up about it to someone they are surprised and seem to pity me some but eventually forget when I don’t visibly show my pain still. This past weekend my own father asked what my condition affects/does again... I was diagnosed at 16, it’s not new but the second you’re not complaining about it 24/7 cause you’re trying to be positive or the second you’re not in immense pain they forget and don’t seem to care! And don’t even get me started on the amount of “but you’re so young! You’re too young to be unhealthy!” Like oh I didn’t know! Let me just not be sick then!

[@katyb2793]

Madison all the time. some ppl never get it. I've got used to just telling people straight that I'm not doing so well when they ask. And that kind of keeps it fresh in their minds. With my family, I always tell them how my health is whether they want to hear it or not. otherwise they do forget and then they're too rough and hurt me, or expect me to do things I can't. Unfortunately I think this actually annoys people. But I would rather annoy them a bit, than have my health impacted. Because really, they shouldn't be annoyed. having said that, I think the majority of people mean well, theyre just caught up with their own lives, or haven't had health issues so they find it really hard to have any idea of what we might be going through.

[@lavahead146]

“If you don’t smile you cry” oooh my gosh you’re so right! I laugh and smile when it comes to talking with others about our symptoms, but then the others who don’t have these issues hear it get sad and are always about to cry thinking about what we deal with. But like. We handle it, and we can joke about it, so it’s okay :) Hooray for irregular poops!!

[@AnnikaVictoria24]

Omg people getting upset about my life is such a pet peeve of mine haha. Not only do I then have to console them (which is ridiculous), im also like, my life is rad? I have so many good things going for me, why would people get sad for me? So relatable haha

[@CallMeAlice818]

Annika is the reason I finally bought myself a cane the last time I threw out my back. I was afraid people would think I was faking if I didn't have to use it all the time. I also underestimated how supportive it could be, especially working retail six hours a day. It's my support baby. I also decorated it with stickers so people know it's mine.

[@EvanAnnaNave]

OMG Annika, you look so elegant sitting in that power chair 😍😍

[@Chibihugs]

Literally my two favorite babes with aids. You and Martina are absolutely gorgeous and inspiring. I feel like I have learned so much from you guys in being more aware of invisible illness and being kinder to everyone because we don't know one another's struggles. I also love "build a ladder", it is a great way to help yourself get in a better headspace to appreciate what you can do. Hugs to you lovely ladies.

[@amberhines3979]

I wear a brace when I leave my house due to an injury. I decorate my brace and have considered starting a YT channel to show people how to decorate their mobility aids. I have anxiety issues so I hesitate to do it. But, I get asked all the time about my brace. People are like "What did you do to yourself?" When I explain, they're like "OH, they can't fix it?" Honestly, that really makes me feel like they're discounting the hard work I put in just to get as far as I've gotten. It's a permanent injury and I will wear my brace for the rest of my life, but I have come from a wheelchair to a leg brace and I taught myself to walk and drive again. I worked hard and put in a lot of effort and have had to come through the depression that comes with all of that. Thank you for bringing attention to the issues people with all kinds of mobility aids have :)

[@Butterflier00]

name a more iconic collab. i'll wait....

[@alicesewnsew2413]

Oh my god does anyone else get accused of ‘being on something’ I’m on a plethora of strong pain medication which in turn makes my pupils very tiny and although it’s very rare it’s happened. Now I panic about it all the time! Even though I know I’m taking the medication I need. That people are going to stare at me and think I’m into whatever. The stress. The STRESSSSSS.

[@freakypetOZ]

Yes!! I have been accused of being a druggie numerous times because of my health conditions - its gut wrenching to see that look 😫

[@alicesewnsew2413]

freakypetOZ I know!!! It’s the worst. I have a toddler too so I get even more freaked out that people think I’m a bad Mum.

[@TheMazinoz]

@@freakypetOZ Me too! Usually from doctors!!!

[@liuqmno3421]

Wow, funny how most of these problems have to do with other people not respecting/understanding disabilities etc

[@firegodessreiko]

It's hard for anyone to understand what they have not experienced themselves. The best way to change their minds and inform them is to be calm and patient and hope that it gets through somehow. It sucks and it's frustrating, but your worth isn't based in the opinions of others anyway...

[@tamaravancza7264]

Do any of you feel anxious when you have to use your aid after a longer period of time when you were OK? Are you scared of the "I thought you were OK now" kind of judgment? Sometimes I don't need my walking frame for months, and then I need it for a week, and I feel unentitled to it, as I was doing so well... Any advice regarding to that? Thank you for being such badass humans, I love your hash tags to bits!!!

[@AnnikaVictoria24]

SO MUCH!!!!! I guess... it's all down to educating people on what CHRONIC illness means and some people are just never going to get that. The spoon theory has quite helped me explain my fluctuating energy levels to other people.

[@eatyourkimchi]

I like to think of my mobility aids as different shoes or accessories. No one would question a different pair of earrings worn every month or new shoes, so I just tell myself, "this is my mobility aid accessory of the month~ knee braces are out...slings are in!" it might sound silly, but sometimes a pep talk to myself can increase my self confidence and help drown out those little voices that are so negative. This month, my ankle braces are totally back in style for the winter ;)

[@tamaravancza7264]

Thank you for the tips!!

[@biancasumfinrandom1653]

I want to challenge your use of "I was doing so well". Needing an aid again isn't a failure on your part. So many of us have such deep insecurities around our illnesses, we are so worried other people think we are faking it, that we appear more severe or less severe than we are, that people might think we are incapable. And the way to overcome that is to change your mindset about it and yourself, as most of those fears are fears we have of ourselves. It's a hard journey but we all need to learn that we are worth taking care of and that these insecurities we have, most of them are complete lies.

[@raraavis7782]

Tamara Váncza I don’t know, if this helps, but...maybe think of it like you think of your period. It’s just that damn time, where you need certain ‚aids‘ and maybe painkillers, even though you’re perfectly fine, the rest of the month.

[@aliceannjo]

At 62 yrs old, I have learned a lot just from this video.. Hats off to you great ladies. I will never "judge " a person who LOOKS healthy, park in a handicap again. Thank you so much.

[@dcinrb8538]

When two of friends with disabilities, first met at my dorm room, they went into fangirl mode for each other's equipment. They barely acknowledged my going out for snacks. When I got back, they both asked why I never introduced them to each other. In my defense I replied, "You're Managerial Accounting and she's Financial Accounting". They laughed so long that our pizza got cold. They explained how one grew up as the "polio girl" and the other as the "cerebral palsy girl". I just hadn't thought about it... which made them joke about my prescription glasses. Until this video, I have to admit I just never thought of you as being disabled. Thank you for your taking the time to share your talents 😊

[@wolfietaurus]

"If you dont smile you cry" I need that on a hoodie

[@MyAncientSpirit]

Opened the KZbin app, saw this video, clicked on it, then received the notification. Great job KZbin. Pat on the back.

[@ForUploadin]

In Japan, 20 year old Ototake was a game changer. He made mobility aids cool things to young generations over 20 year ago by mega hit contents on wheel chair life. His influential power made whole Japan the most wheel chair friendly society.

[@CarlosPenasGrl]

My favorite thing is knitting cane covers! I have a Hulk themed one and a Steven Universe themed one! Because I cosplay and feel iffy using mobility aids when I cosplay, I started knitting ones that matched different cosplays just in case I need to use it at a con

[@creativecheersoffashionlau7364]

I have a chronic illness for22 years now and when i got sick I learned to build a ladder to try to get a little better and appreciate what I still COULD. After 22 years I have difficulties appreciating. I walk with a cane fir very small distances but usually use my mobility scooter. I don’t care people judging me, i am over that. I don’t like rompers because I have to pee very often and hate taking off everything. But what I noticed sometimes I wear heels( not stilettos but wedges of higher block heels) and walk with a cane. Then people are STARING!! How does she walk in heels as she can not walk?? But I CAN walk but just very small distances and heels aren’t a problem for me. Has nothing to do with my illness

[@o0Avalon0o]

Wedges are so much more stable than even the tiniest heels I've tried, so I'm with you there. I love them, they're not practical everytime, but that doesn't give strange people free reign to be judgy. I'm glad most people are understanding but the jerks really know how to stand out.

[@creativecheersoffashionlau7364]

desi you are totally right! Everything is an accomplishment. But when you have the illness for many many years I feel it gets mire difficult to appreciate what you CAN. At least for me. I want MORE after 22 years. And get so annoyed when healthy people start complaining..... must be the frustration....

[@peanutsandberrys]

I just realised, Annika, you would love the Tania Culotte sewing pattern by Megan Nielsen! They are culottes but because of some clever pleats they look exactly like a super cute circle skirt! Plus it's easy to sew because the instructions are so well written!

[@TheMazinoz]

You could possibly wear braces under them and not be noticed.

[@samwheat7400]

I just recently got a cane for my mobility, at 23, I have something that makes my muscles push my spinal vertebrae together and out of place, and on flare-up days I can barely move or sleep. My husband got me my first cane and when I think about it I cry because I couldn't go with him and he spent so much time picking out a nice color and fit because even though I won't need it every day, he's very aware that mobility aids can make someone self conscious. I'm excited to be able to function on pain-days now, and that I have someone in my life that is so understanding.

[@epowell4211]

I became partially disabled when I was 30 and spent the next few years using wheelchairs, walkers, and crutches before I finally graduated to my lifelong friend, the cane. Not only was I young, but I was obese, so the looks of disgust I got from strangers were extreme and in your face. Husband got auto-decal stickers for my cane, and 20 yrs later, they are still stuck on well. The first 15 years, I was more concerned with how I looked and became an object of pity when I used mobility devices, and the last 15 years I've felt a stronger need to use them to justify my limitations and special needs. Both attitudes suck. I like the idea of ribbons and such on canes - I pictured a giant fairy wand lol. Hugs to you both, and all your viewers in the same boat

[@SachitheCat]

I tend to strap my ankles when I'm not sure about how structurally sound they are that day, and I've been using a cane more often, typically on days where I feel worse or know I'm gonna be walking a lot/in a crowd/standing, or just feel like I need the extra visibility. I'm also tempted to use it every Tuseday, because I'm re-taking a class for the third time and I'm not happy about that. I think the cane might be a nice signal to say "yeah I'm legitimately ill." Beatrice is a $2.80 daiso cane that I've first covered in black gaffer tape, and then stuck more stickers over the top. She's getting more stickers, because stickers are amazing. I also want to get some compression gloves for my hands, because they're shit and I feel like it's worth a shot so I can play guitar and do shit without them hurting as much. I'm trying to find a black set, because then they look like a deliberate thing instead of a "I'm trying to hide these, but since these are a shade of puke beige I'm not doing a good job" thing, because if there's anything that's fun its trying to work the medical aids into the outfit instead of hiding it. One of my favourite looks was when I had a heart monitor for 2 months, and it was this cyberpunk look that worked with the cables instead of against them. I love stuff like that, because fuck it, I'm chronically ill and an alternative fashion weirdo, I'm already getting stared at for the patch jacket, hair, tattoos, piercings, and being a young person who dares to use priority seating, so why bother hiding it. Just go all out and they can all deal with it.

[@TheMazinoz]

Atta girl. Could you dye some beige ones?

[@olgachronics3273]

What Martina said about people trying so hard to help is something I experience so much! When I'm using my mobility aid people are always offering me seats and asking me if I need to sit down, and it's so relentless that I'm like I've lived in this body a long time, I know if I need to sit and I have a functioning mouth so I'll ask when I need one. But I also agree that it often doesn't come from a bad place, just people who don't know much about invisible illnesses trying to help.

[@CatGirl-ob4ki]

My brother is blind and absolutely hates using his cane. I think it's because he's self-conscious. Hopefully these videos will help others own their aids with style and grace.

[@slugssnailsandtales]

I'm so grateful for this video- I have hEDS and I don't think my own doctor's understand it! I throw up a couple of times a month, have bowel/urinary issues and get light-headed! I didn't know this was something other people with hEDS experienced! I use walking sticks, a wheelchair and a mobility scooter depending on what kind of day it is for me. I hope to decorate my mobility scooter pink and yellow, and perhaps make a video of doing it up as there aren't many videos like this! Thank you xx

[@AnnikaVictoria24]

I would LOVE to see that video! Please email me a link if you do! ❤

[@BridieTurtle]

Thank you for speaking about this. I really struggled when I started to use my wheelchair, i got a lot of stares and felt super uncomfortable, at the end of the day I would even snap at people to stop it. Now I've been using one for over a year and it changed my life, it's also an awesome dating tool to get rid of the scum. The discrimination is also ridiculous. What's really helped me is seeing other people being confident using their aids and looking/feeling sexy and cute.

[@katyb2793]

Bridie Turtle I sometimes need a wheelchair and the other day I was in the doctors office in one. I got SO MANY STARES. which is sad but normal. except this time I also had on a face mask. I've never seen grown men look so scared before. they were literally staring, fidgeting and pacing. I felt so bad coz I definitely didn't have a virus.. 😷

[@BridieTurtle]

@@katyb2793 hahah so true. People are freaking out cause immunodeficient people who usually wear masks are still wearing their masks. Yes it's to protect you grown men from my deadly insults about your stares.

[@katyb2793]

Bridie Turtle hahahaha! well I don't blame them in the current environment. I think everyone is starting to really freak out. it was so tempting to start fake coughing and sneezing everywhere. But I felt too bad to haha

[@MLEbug]

My walker is a vibrant purple which makes me feel really girly, and my cane has brass like finish with a wooden handle which makes me feel classy and a little steampunky. 😊 It's still not enough to stop the comments like "you're too young" and 'you don't need that, you should give it to me" from the older generation, and quiet stares from the younger. 😔 There are definitely days where I go without because I'm too tired to get the walker in and out of my boot or am just feeling especially self conscious.

[@Catlady29]

Aw I've missed Martina. I used to watch her videos when I was younger. My boyfriend always reminds me that I'm not my illness, but it's hard to be positive.

[@sofiejegeras3179]

Hi Annika! My kid is like you, that she uses a wheelchair sometimes and walk sometimes. She is 6 and I Love these tips. I Will save it for when she gets older. ♥️

[@maryannedelaney]

I love the concept of build a ladder. It is also a great exercise for those struggling with depression.

[@kathysammartano4432]

Even older people have trouble with people's assumptions. If I'm being pushed in my transport chair, people seem to assume that I am incompetent and ask the pushing person questions they should be asking me. One wonderful friend looked incredulously at the receptionist who had asked her if I had flu symptoms and said, "She's right here." Schooled.

[@skateabella]

I have hEDS and just started using a wheelchair and I’ve been needing a video like this!! 💕

[@hollymynott1962]

I'm an occupational therapist (who also has narcolepsy, chronic fatigue and wears a hearing aid) and this was very eye opening, I don't always think about these things!

[@dorieparli9090]

I wanna know why someone would dislike a video about women encouraging others to live with society instead of hiding from fear of backlash due to disabilities. Like what’s bad about it?? “Oh no someone found a way to be happy and feel good about their disadvantages in life, how dare they!!”

[@sohv1s]

I have autism and depression and other symptoms because of them and I was used to tell my diagnoses for everyone but then I noticed that people will freak out at first and it slows down getting know people and being bad at socializing it was a problem. Now I don't start introducing myself with them even though they tell much about me but I will tell if it's needed. I'm ashamed about it. I hope I could have a stick or a wheelchair type of item to show people around me I'm not ok. I wear almost always headphones when I'm outside and now when sun has come back and spring is coming, I'm wearing sunglasses even if it was cloudy day. (I have undiagnosed migraine and may have psoriasis but I'm waiting for results from biopsia. If I have psoriasis, I might have joint psoriasis too.)

[@CallMeAlice818]

I've always been sensitive to light. It could be cloudy and I still need my sunglasses. I wish I could wear my sunglasses inside at work when the sun shines through the windows. I never understood how people can go outside with out any shades on.

[@SomeoneBeginingWithI]

I'm autistic too and I also find it doesn't help to tell people straight away. Autistic people vary a lot and the traits that are most well-known are not all traits I have. So if telling people that is part of the first impression, they will usually assume things that don't apply to me. So I wait, and mention things as they come up. Like if I have to wear my sunglasses indoors I say it's because the bright lights make my head hurt. If it's really noisy in a crowded room and I have to leave I say it's because I have sensory processing issues and I can't think properly when it's noisy. And then when people know me well, if there are social issues I can say it might be because I'm autistic, and then it helps them understand me. I have a pin badge that says "not all disabilities are visible". I don't wear it all the time but sometimes I do. I think it's good because it doesn't tell people exactly what the disability is, so they don't get distracted by their stereotypes about autism, they just think "oh this person might be disabled" and then they're more considerate.

[@tiredtransman]

I was just diagnosed with degenerative disc disease and degenerative arthritis and it's been really hard, as a 25 year old to come to terms with actually being disabled and learning to change the way I live my life as my condition gets worse (and trying to slow that as much as possible) I have been watching both you and Martina for years and, honestly, it's really nice to have videos like this and the supportive, positive things that you guys put out all the time. Thank you both for existing and making content.

[@chandlerwhitchurch9984]

Something I think is VERY IMPORTANT: Parents tell this kids not to stare. Children are conditioned to not look at people in wheelchairs or whatever. I personally believe this leads to adults who can’t look people with mobility aides in the eye. Like, if your kid is curious, just tell them that person needs the mobility aid to live their life. It’s normal for them and it’s normal for you

[@gemsioisnuberonecat]

I found that puffy fabric paint sticks to compression sleeves and braces pretty nice!

[@sunshinesmiles5386]

I'm a completely healthy individual with no need for mobility aids, etc. I see a lot of people mentioning that is really frustrating when people _______ that I didn't even know was annoying or rude or anything! So I appreciate you ladies being open about these things, because it's really easy to be that annoying person, just because we didn't know. :)

[@MirageEspejismo]

@Annika, the Queen's wave was everything ☺️💕😉 I can totally appreciate where you girls are coming. I also get judged as "young & healthy" from the outside. Even some doctors have done that to me & immediately change their tune once I start explaining my condition(annoying). I still feel like people view many of us as lazy, not realizing it's chronic fatigue or bad joint pain flare-ups, sigh. I have a type of Lupus that is not very common. It affects my kidneys & other organs causing me a plethora of fun symptoms👍🏼. Invisible symptoms. Like unexpected fatigue, joint pain, bruising, headaches, sensitivity to light, etc. So yeah, I guess we just have to build a higher tolerance for people that are ignorant. Love you babes!

[@katyb2793]

MirageEspejismo I got that so much at my pain clinic, and pain support group. They literally said what are you doing here you're so young. And insinuated I can't be in as much pain as them since I'm young.. that was quite difficult to deal with. but, I made one good friend, so I gained something anyways!

[@MirageEspejismo]

@@katyb2793 Again, #superrelatable! When are they going to learn that just because someone looks young, it doesn't mean they are physically ok on the inside. Sigh. Like I said, try build a tolerance for all the idiots, it's all we can do! (◔‿◔)

[@katyb2793]

MirageEspejismo exactly! we have to build tolerance, otherwise we'd crumble. all the best for your health, you've got this!

[@theflapperbassist1361]

My heart feels so full and happy that you two got to meet and collab!

[@Kornkitt3n]

i got diagnosed with inflammatory arthritis at 18 a couple months ago, suspected rheumatoid arthritis. ive had to drop my studies while i trial new medications and go through lots of tests. i use compression sleeves on my knees and ankles, also compression gloves for when my hands get very swollen. i still haven't accepted that it's arthritis causing me pain, but then i remember that the pain was there all along, just with no name. im happy to have a diagnosis but i do often have to educate people on how there's different types of arthritis. mine effects my immune system and makes me susceptible to illness and infection, because my body is too busy attacking my joints. also my medication works by suppressing my immune system, so anything from a small bruise to an infection, takes a long time to come back from

[@larrysh0me964]

SHES WEARING HEELS SHE DOESN’T REALLY HAVE EDS OR SHE WOULD BREAK HER ANKLES REGULARLY /s (i’m joking pls i have eds and fibromyalgia I love this video i want to send it to everyone i know)

[@BridieTurtle]

Hahaha a lot of people wear heels because they find it more comfortable (I know I do with my EDS) but hahaha this comment got me giggling cause it's so true. "You're faking it cause you're wearing heels"

[@chaelao.4321]

Right lol i find heels more comfy bc i cant lift my toes toward me so i trip less than in sneakers. I habe afos now tho

[@michimelody4036]

I can't even wear tennis shoes because they don't have enough ankle support but if you've done enough muscle training you could wear them. Not every joint is super unstable if you work on those muscles to stabilize the joints. I'm doing PT twice a week right now because of my knee subluxating, then realized my fibula isn't staying in place either, then realized both my ankles are horrid. Now have two AFO braces casted and being made and waiting on them. The life of a connective tissue patient is like following a leak and never really knowing where it's going to take you. Still haven't been diagnosed with EDS because my doctor wants that actual genetic test to come back positive or a relative and my test didn't come back with a positive and she said I wasn't hypermobile enough even with a 5/9 to hit the hEDS mark even though before being bedridden for a year and a half I was 7/9.... Sigh

[@nat6098]

I've had people tell me that so many times. I have EDS, fibromyalgia, and osteoarthritis in my spine, and I use a cane because my left leg likes to just stop working. Heels are so much comfier for me because they shift my center of balance so there's less pressure on my arthritis, but oh boy do people freak out if you wear heels and have a cane.

[@michimelody4036]

Also Jessica Kellgren Fozard wears heels all the time and uses mobility aids and has hEDS

[@jaydeeelady]

Here from Simon and Martina. Subscribed. ❤😊

[@AnnikaVictoria24]

Welcome!! I hope you enjoy your time here :D

[@jaydeeelady]

@@AnnikaVictoria24 Thank you!

[@eatyourkimchi]

@@jaydeeelady YAY!!!! :)

[@jaydeeelady]

@@eatyourkimchi 😊

[@elsagreen1476]

You two should model mobility aids. You make them look so cute and glamourous!

[@stacyw8466]

This video had me in tears. I have suspected hEDS and my doctor told me almost 2 years ago that I need to use a cane to walk. Everyone outside my kids and husband told me to wait because I am too young and it would be drawing attention. They made me feel like I should feel bad for needing mobility aides. Thanks to you both, I feel that I have the confident boost to know that I am not along and it doesn't matter what others think about it, its about what my body needs. Thank you both so very much!

[@TheMazinoz]

When a hospital physiotherapist gives you a cane, you definitely need one! That's what convinced me. I just wasn't sure before. I have a fold up one for interviews or similar if needed.

[@robertstanfill2360]

I'm with you sweetie. I have arthritis. One knee replaced and the other is having shots. My back has deteriorating vertebrae. At times I use a walker or a cane. I've always used bandanas, stickers, and scarves to jazz them up. The kids at my school like to see how I've used accessories that day. I'm 61 but gave had issues for several years. Don't judge. You don't know what they're going through. Love you both, Annette

[@TwistedGlitter]

I recently gained a friend at work with EDS. They were shocked I knew about it because so many doctors they've been to have no idea what it is. Thanks Martina for being open about what you're going through. It's been really educational and has helped me understand my friend more 💜

[@voldemortsniece3019]

I am not disable but I had knee surgery when I was 19. I was on crutches for about two months, I could hardly walk for five minutes without being in terrible pain in the first couple of weeks. I went to sams club with my mom one day, I used a electrical wheel chair they provide in the store bc it’s was so soon after my surgery. I kid you not, I had so many nasty stares and comments. People keep coming up to me saying that I was taking up space, that I didn’t need a wheelchair bc I was young and healthy. The harassment was bad that we had to leave early. It was awful.

[@imrebeccap]

My mother uses a wheelchair and I am super small and so is she (genes) and people are always asking if we need help when we go out. It can be really really annoying because they don't know how to "help right" or both of us are completely fine sometimes the help is the exact the worst thing to do or not helpful. It's annoying. I try my best to just ignore it and avoid helping unless explicitly asked. Or it's something I would do for a person without an aid (i.e. opening a door, picking up something they dropped holding an elevator )

[@katyb2793]

imrebeccap i try to just be grateful. at least they are showing concern. it would be worse if they saw us and cut in front of us in a line, or slammed the door in our face, etc. I know that's not easy, but I guess it's all about perspective ☺

[@walkingjello]

Its so amazing to hear people with EDS because of the feeling of solidarity! You guys are the best and make me at least feel less alone

[@persnickety2634]

Been having a really rough time down in the pit due to my chronic illnesses, looks like I need to be building a ladder! Sadly also at the stage that I have lost my friends due to then not understanding the restrictions my illness puts on my life. Hard to be positive when you don't have friends willing to reach out or accommodate. This is an amazing video and the hashtags have truely helped me a lot :)

[@rayanagi]

Chronic illness can be really isolating. Lately I've been putting myself out there more via Facebook and Twitter. Letting people know and being real without seeming whiney can be a challenge, but I have one understanding friend now who keeps offering to take me out for lunch. Baby steps.

[@katyb2793]

Becky Yanagi I've been struggling too ( had to move to my mum's town so I'm physically distanced from my friends). as time goes on I'm slowly forgotten by some. But it's the ones who don't forget that I consider true friends. And we truly are blessed to have social media. if we were like this before technology, all we would have was snail mail! 🐌

[@AnnikaVictoria24]

I have been there (hugs). I can only promise you that it'll get better & Don't be afraid to put yourself out there. Chronic illness communities on Instagram are one of the loveliest, most accepting places I've found ❤

[@TheMazinoz]

My cat volunteered herself as an emotional support person. She even walks to the corner Aldi's with me, much to the amusement of many.

[@celebkiriedhel]

I have a pink cane. I also cover it in washi tape. Although I'm not young (58), I don't see why any mobility aid should be plain. Especially when you are younger, it's another opportunity to express our creativity and personality. You inspire me with your creativity. (I'm going to try the nail polish idea!)

[@Lucieff]

I "only" have mental disabilities, not physical, but I wanted to give my support and understanding. When I was 16 I had knee surgery because of luxating patella, and even with my giant brace, that went from ankle to hip and my crutches, I heard a lot of shit... One day, I was yelled at in a bus by an old lady, for sitting on a seat for elderly. I got annoyed and mad, it hurt a lot that day, so I ended up standing up with help from my crutch and yelling back at her, that "the seat was for elderly AND disabled". I felt so bad afterwards, cause I don't yell at people, but that really shows you, how blind people can be at the possibility of disability, just because you're young.

[@73Stargazer]

Mines definitely not as severe, but as someone with IBS I definitely relate to the poop talk.

[@adriennegonzales2636]

I'm so glad you mentioned psoriasis! I have a lovely blend of eczema and psoriasis which has gotten me concerned looks when I wear clothing that reveals it to the world. It does need sunshine to help, shockingly. I always have to tell people that it's not contagious because that's the first thing they ask.

[@SquidFiction]

Love that one shot of Annika twirling in slow motion as 2 dogs walked by, was that intentional? Haha! Gonna check out Martina’s channel now too!

[@AnnikaVictoria24]

Just an accident!! But I think it's my favourite shot of me ever haha

[@emills767]

Thank you so much for this. I was diagnosed with an auto-immune chronic illness in January and this makes me feel less alone.

[@Danijones4571]

Hi guys :) I am also a young person with health issues, it's so nice to see others understand it! I don't think I'm the same as you two though. One of the big things I have is psoas syndrome, I can't stand up for more than 5 mins as it's too painful as my hips pull my pelvis forward and a lot of weight goes through my lower back, had that since I was 10 am now 22. Idk if you'd consider that a disability per-say but it defiantly stops me doing a lot. Aside from that I have arrhythmia & fast bpm, precordial catch syndrome, anaemia (malformation), side pains, mebomian gland dysfunction (dry eye), and I used to have chest infection for 8 months, a uti that lasted 12 months straight and thrush that lasted 2 years. Yeah that's a lot of personal info but I think people like you would understand that it's all just medical terms and everyone's got a body, you get a bit immune to being embarrassed after so many specialist appointments and intrusive tests haha. Thanks for making this, lots of people just don't get it that young people can have problems too

[@yulianadzyurbil7937]

I don't know if they are wheelchair friendly but biker shorts under dresses! It prevents both chafing and flashing people. I never wear dresses without them anymore

[@acmulhern]

Having to use a wheelchair is awful. I was lucky enough to only use it for a short while after a fall but it really opened my eyes to what it's like. I suggest everyone try to spend one full day out and about in a wheelchair and you'll be shocked. People were so incredibly rude, even pushing me aside to pass in front of me in a cue or random people knocking things into my head. Also, can we talk about all the places that aren't accessible? Thanks Annika for sharing your health condition in order to make those who are going through a similar thing feel less alone.

[@SaintShion]

This lady I talk to at my Rheumatologist paints all her walking aids bright hot pink & adds rhinestones lol. I never thought to decorate my cane lol

[@kayleeferguson8261]

Build the ladder is a great idea . I do not have an illnesses but I do have bad anxiety and I feel like Build the ladder could help me.

[@reeda5390]

kaylee ferguson anxiety is an illness

[@amaliemunk7067]

Thank you so much for sharing this with us! I don't have a chronic illness, but I find it so important to educate myself on this :) you are both awesome, keep being strong and fashionable ❤️ Love from Denmark

[@katyb2793]

Amalie Munk thank you! ppl like you are gold 😊

[@meloncornets3034]

Thank you for this video! I love learning about this, especially to explain to my son about invisible illnesses. The few times my son sees wheelchair users, he says they are race car drivers.

[@sarahportelli93]

I jazzed up my wrist supports with some puffy fabric paint. One says: 'No pain, no gain... I guess?' the other has 'Everything in life is a joint effort' on it.

[@jaypeaceandlove97]

Thank you for this video, I have a learning disability that makes reading and writing difficult and the worst thing for me is people saying I’m too smart to have a disability. It’s like a backhanded compliment, like being pretty for a black girl, just because you have a learning disability doesn’t automatically make you stupid.

[@MiauMichigan]

Annika and Martina together???? 💖💖💖💖 Two channels I love and two people I admire a lot are together in one video!!!! This is awesome! Thank you for spreading awareness.

[@EpikMagikFishy]

the part about not using mobility aids because of others, i felt that specifically because i'm a dancer and i'm always afraid i won't get cast if directors see me with a brace or a mobility aid. i haven't used one in a couple years but i know i need to, just afraid of losing opportunities when i'm perfectly capable and NOT using my mobility devices actually HINDERS my ability to perform

[@TheMazinoz]

HEDS is very common in ballet dancers. Catch 22. Pilates?? Wear brace when not performing??

[@murdocthedestroyer]

This is so important! Thank you for bringing this to 2020! I feel so hesitant to use my wheelchair (luckily it’s very rare usage these days) but I got the brightest most violent green one possible! I struggle with people not seeing me as a whole person in a wheelchair, like if I’m in a chair then I must have a mental cognition problem, and it makes me feel so bitter sometimes. Anyway- thanks for sharing 💕

[@wiebelziel]

Annika I am so grateful to you and every #BabeWithAMobilityAid! I started getting severe pain in my hip some months ago (just got diagnosed with ankylosing spondilitis). Because I had seen women my age using walking sticks I knew it was an option to get one, and I feel (mostly) comfortable using it. It's such a game changer during a flare! If it hadn't been for that representation I would be struggling so much more.

[@probed100]

Great conversation , in my 20s I stupidly refused to use a stick I have destroyed my hip but am not well enough to have a replacement . I was put in clinics with people in their 80s and 90s ( not good) How I wish I had found you earlier . Whenever I watch you you make me so much better about myself and coping 🥰🤩😊

[@truehoomanhere6230]

When I move people can hear a lot of popping noises (either lower back, shoulders, knees, fingers ect..) Anyway, great video, it gives more visibility to people who might have those problems 💛 Love those two cute babes!

[@jeantaua9053]

Annika, thank you for showing us what is a great way to dress when you are in a wheel chair. I am 75 and I have so many things that are wrong with me and no one understands. I have diabetes. arthritis in every bone in my body, (5 total knee surgerys) incontinence both urinary and fecal, I have asthma and been on so many steroids my arms look like bat wings. I look so strange I stayed away from my granddaughters wedding. I love watching you so much. I need to learn how to alter my sleeves to accommodate my huge arms.

[@Koriography2929]

i don’t use my braces all the time but i always get scared to use them. the worst is when both my wrists flare up and i have to wear both braces, people tend to avoid me then. but when i do wear them i love putting bracelets over them, i even made some for days i have to wear my braces. i have to wear shorts with my knee brace so i actually have so cool tattoos that create more of a conversation than my brace. i love this video because i feel a bit more confident for my flare up days. thanks to both of ya!

[@thisismyname3328]

I don't know if this has come up before, but Jessica Kellgren-Fozard also has EDS and is on youtube. Shes done things similar to this before too.

[@MadCacti]

Loved this video, especially since I’m not disabled and I don’t have anyone in my life who is, videos like this definitely help inform me how to be less of an accidental jerk.

[@joannetiffany8047]

OMG!!! You have just said everything I have ever thought or felt!! I became disabled at 19 im not 30 been diagnosed with 2 forms of chronic pain and still not converted from a manual wheelchair to and electric wheelchair because I fear the looks i get. Also Anxiety and depression are other conditions I've been diagnosed with. I agree, with #buildtheladder It's an achievement if I've got out of bed ect. X

[@courtneyd4527]

I worked a huge convention recently, and in the past it's been exhausting. A few years ago I started to use a cane for long periods of walking and standing, and this convention is the prime reason I made that decision. But this year I got to work in a department that meant I got to be in the "diversity lounge" which is a space specifically for people of all sorts of identities, races, genders, and ability! It was way less walking and standing, and I felt really welcome and supported, and got to support and protect those in the room. But even there, someone still questioned me on my cane two days into the convention. "What happened? You didn't have that yesterday." and I shyly tried to explain that I did, but I mostly use it for lots of walking and standing. It doesn't feel good to have someone question your mobility aid, even if they may have meant nothing of it. I really struggle with using it most of the time because I'm a young, able-bodied-appearing person.

[@mikekun155]

Howdy! Came from Simon and Martina channel. You lady's are so elegant even with your aids. Keep up the confidence!

[@AeriSoondingie]

I'VE BEEN WATING THIS FOR SINCE I LEARN THAT YOU WERE FRIENDS, I'M CRYING OMG, I LOVE YOU GUYS

[@AsioEntomo]

My partner is 24 and uses a cane due to messed up joints. They always look SO fancy because their cane is sleek and shiny and black and meshes really well with their style. It's a lot easier to colour match when everything you own is black!