I lost more vision… 

You are such an inspiration! You have skillz! Love you! Everything will be okay!

Of course! Yeah it has!

Is this Molly talking, or her editor? Not trying to be rude, but this is the kind of stuff I wonder about.

You are amazing you will get through this.

You are so INSPIRING BBFLS LUV U here for you always ❤️🌟💕✨

She totally is she has inspired me so much

Aw, thank you

Ikr 🥺💕

I agree she is amazing!!

i think she’s meh

You got this mama ❤️ I can't even imagine how scary it must be. But you're not alone, know that we're fighting alongside of you.

❤️❤️❤️❤️❤️

I’m sorry you are going through this ❤️

I'm sorry for what ur going through its not fair I hope they find a cure for this

Same. I've got my Dna tested for RP and are waiting for the results. Its fucking scary. I wish you luck

Such a great comment Sarah. Hugs to you and Molly 🙂

@@walk_with_me_23 thank you! hope you have a great day❤️

Bless you Sarah. 🙏

“Can’t wait to see”

I'm so sorry you deal with that :'(

I hate it when that happens, I have been through that too. Stay strong and never doubt yourself. You know best what you can and can't do, and you know what you are feeling and going through is valid. Best of luck.

yes, a child managed to fake an illness well enough to trick doctors into writing notes. That makes much more sense than some people are just affected differently.

I actually did that to myself. My aunt has this condition, and I was showing some of the same signs. However, I was functioning fine, unlike my aunt, so these signs had to be some normal teenage hormonal shit . Now I have the same diagnosis as my aunt. Also, due to not getting treatment at an early stage, my levels of function are lower than they could have been. Still, better than my aunt. Who is a generation older, and got less advanced treatment. Teenage me never considered that.

Dude that's messed up. Women in particular are not taken seriously enough by doctors. I have no formal diagnosis, but suspect some neurodivergent-ness in myself and had some serious PTSD and PPOCD after an awful emergency c - section. So many of my friends had the same procedure but it does not matter! Your experience is your experience! Sometimes the very tiny differences in care providers can make the hugest difference. And everyone's ability to cope (including pain tolerance) is so different. There should be nothing but individualised care. The healthcare profession has a long way to come and the 'casual' stigma around disability needs to end too.

Can't emphasize this enough! Very well said. 👏👏👏

Exactly what I thought!

Same thing ran through my mind!

I’m also autistic and have been losing speech more often. I never really am completely unable to talk, but I’ve been having periods of time where I have very little ability to verbally communicate. One thing that is helping me is to have a non-speech way to communicate, and supportive people to use it with.

I’m also autistic (with a touch of ADD), as are multiple family members (a younger sister, a cousin and an uncle) while I don’t know what it’s like to go nonverbal I do know what it’s like to be autistic and my cousin is partially nonverbal as well, altho she has learned to communicate her emotions better since she got help since she was very young while I was only recently diagnosed and she used to pick on me not being able to communicate properly all the time... anyway, I learned sign language with her so we could still communicate when she went nonverbal and I remember how she always had this huge smile on her face whenever I was around to speak to her in sign language (her parents didn’t see the point, neither did any other uncle or aunt of ours or my parents for that matter) us two along with one other cousin (the three of us are all the same age) were the only ones who did. I just want both of you to know that even tho I don’t share your experiences I am here for you and there are people willing to learn to communicate on our terms and not in the “normal” way (gods I hate the word normal)

@@alexwohlgemuth4099 10,000%

@@lukaseldenrust2637 thank you 🥰

As a fellow autistic, I can't talk if im particularly stressed (i have panic attacks and struggle to speak for hours after) take time to assess if there's other stuff going on that might be triggering nonverbal episodes. I cant avoid all stressors but for somethings i can predict the issue and prepare, taking time before and after somethings, bringing the right headphones, wearing my good shoes, a note to explain i.e. im terrified of the dentist and having had some really traumatising experiences so i write down whats going on and why so i can get the support needed

That is exactly what I feel and couldn't figure out how to say. 10/10 comment.

I relate to this a lot because that's how it is for me. Even just losing a bit of the ability you do still have left can already be huge. Other people might think that it isn't that bad because you are already disabled anyway but that's really not how it is. You get used to what you have and if that suddenly changes just sucks and you have to go through the getting used phase all over again.

eds ?

Yeah I have EDS and POTS

Yes!!! Thank you!!! I have POTS and fibromyalgia… It’s extremely difficult for me to shower and so I don’t do it often… Some days, I can stand up and maybe cook some pasta, but not very much…

Without even looking at replies I knew you were talking about EDS. I know all too well how it feels. You are definitely not alone. I myself am so tired of the pain.

Sorry to ask if this is insensitive, but is your other eye okay?

@@taylorl.9875 not a problem! My right eye is still healthy & working! I just had my left eye removed because of the extensive damage

@@bubblewrap787 so sorry to hear that! I’m glad your other one is okay, hope your recovery goes smoothly

@@taylorl.9875 I appreciate that so much!

Oh my gosh, I'm so sorry!! Glad to hear your other eye is OK.

that sounds bad

That sound really rough. I hope you are doing ok, sending much love!

Hope you get a new leg that may sound funny but I'm not trying to being funny

@@junkoenoshima9710 I’m getting a new foot on the 2nd

@@mallorylischer congrats man hope it works as well or better for u as the old one

Sending you so much love right now

@@MollyBurkeOfficial Thank you so much. Yeah it’s just life and being strong is sometimes the only option we have I try to be open about it and just laugh and stay optimistic which my friends and teachers like to say I’m the ray of sunshine or the victory story but I have learned more from watching your videos so thank you for making me feel like I am not alone in my journey or war

I’ve got EDS too and suffer from extreme pain as well. I’m sorry that you’re suffering but it is nice fo meet a fellow zebra!💞

I'm going through this too, hEDS. I'm seeing a specialist in a week but being debilatated by it in the meantime is so frustrating, the painsomnia. I feel your pain, truly.

Hi, i’ve recently been told that i might have Ehlers-Danlos, would someone tell me exactly what to expect? Where I live, in Spain, i haven’t found much yet, and the association has not been helpful, in fact they have not responded to my questions about where i can find specialist. Also, I feel for you and i am very thankful for molly bringing up the conversation about rare illnesses, as I found your comments

I’ve got something similar and POTS

@@silviam6186 I'd be happy to talk through it with you if you'd like. www.reddit.com/u/AliceofSwords? If you message me on Reddit I can get more in depth, but I'll give you some links here. There are 12+ types of EDS, most of which we have genetic testing for. However the most common type, hEDS, the gene is still being researched. So some people will have a diagnosis from genetics, some will have a clinical diagnosis based on symptoms. www.ehlers-danlos.com/what-is-eds/ It's a genetic condition that can happen from a spontaneous mutation, or it can run in a family for generations, some types are dominant, some are recessive. The basic issue is that a type of collagen isn't made correctly (though that's a generalization, we're still figuring out some details for some types). Our connective tissues don't stretch and bounce back the way most people's do. Because there's collagen in basically every part of the body, the symptoms can seem like a scattered mess. Joint issues are the obvious thing, usually our ligaments don't do a good enough job to hold our joints together. That work then lands on our muscles, which can handle that extra load a lot of different ways. I've been told my goal should be to build so much muscle that it's able to do that work relatively easily. The other side of that is that my muscles are prone to severe cramping that can interfere with function. Skin problems are also very common -- stretching, tearing, odd texture, reactions to adhesive, poor response to stitches, etc. If you have issues with blood pressure, or digestion, or allergic reactions, that's very likely to be connected, but we don't have all the answers on the mechanisms, just correlations and guesses.

I don’t have a cane but deal w fibromyalgia so I understand. My heart is with both you & Molly & I hear and validate both of you completely. (Sometimes my vision gets affected too, I can’t see or it gets blurry and I need to wear sunglasses b/c my eyes can get so fragile). People who don’t understand neurology/physiology & looking at others or not really hearing someone with chronic illness truly are the ones at loss b/c it makes them look like uneducated & mentally ignorant. Rather be me & frustration w my chronic illness (that contains a bunch of things under fibromyalgia) than walk around being an uneducated & mentally ignorant person. 💜🤍💜

@@DiamondEyez456 same I have to wear sunglasses all the time even if it’s not the bright out or I get extremely dizzy and I faint a lot

@@kate_omega2657 Ya, I get them as well. I also carry those earplugs you can get for going to sleep or loud noises. I will even wear them in a waiting room waiting for my doctor’s appointment. I most definitely do them use on days when it’s been a bad day (physically all over as everything is super heightened on the rough days), and I want to make something like a nice cream/smoothie, I wear my plugs as well. All little tricks to just do what we need to do in loving/compassionate ways b/c as you know, it’s mentally and emotionally upsetting. Some days more than others yet remembering these things and one moment at a time is how I get through. 💜🤍💜

I am so sorry

@@DiamondEyez456 that’s a good idea

God bless you too.

Could you please tell me how severe it is if you are comfortable with sharing? I've had myopia since I was a kid (about 6 years old) and my vision is really bad I've just learned to live with it but yeah the fear always looms.

I have also sever myopia. My vision just got worse again as well. I have reached -10 now. However, for me, it is not a big deal. I am one of the lucky ones. With the right pescription glasses I still have 20/20 vision. So, I only have difficulties with things like putting make up on, when my glasses somehow fall/fly of my face (sports) and swimming of couse, especially while swimming in the Sea or lakes. I really prefere swimming pools.

@@Ira.1 Don’t feel super comfortable about sharing exact number, but it’s worse than -6. My myopia also started at around 6 years old, so now I’m curious to know the average age that myopia forms. Thanks for sharing your story, makes me feel less alone! ❤️

@@hixy4755 Yes! I have that exact problem!

Ella P I am 51 and have had myopia since I was really little I got my first pair of eyeglasses at 5 years old. Over the years my vision has changed a little by every time it changes even a little is very upsetting for sure! Now in the past year I have been unable to wear my contact lenses because of my autoimmune disorder Sjogren’s syndrome causing my eyes to be severely dry! I think losing the ability to not wear contact lenses was very upsetting I have worn contacts for years I’ve had major self esteem issues from bullying and judgement of how thick my lenses are. My prescription has changed now to include bifocals as well and I’m still moving objects closer or further away to read something! My prescription is -7.50 in right eye and -4.25 in left eye with a-3.50 astigmatism both eyes and also +2.25 bifocal in both eyes. So with the astigmatism my and my basic prescription are added together to explain what vision I see without glasses which is -11 in right eye and - 7.75 in left eye plus the bifocals. I don’t qualify for eye surgery to correct my vision and the eye doctors over the years could never get me to see 20/20 with my glasses it’s pretty good by With my severe dry eyes it has made my vision a little more blurry sometimes for reading or close tasks. I am to administer eye drops 6 times a day and an eye ointment at night, sometimes I forget which makes me nervous because my eye Doctor says there is a possibility of blindness if I were to not treat or minimize the dryness. It will never go away I will always have an autoimmune disorder. I also have Rheumatoid arthritis, Osteoarthritis, fibromyalgia which I’ve had since I’ve been a teenager. The judgement for those diseases is incredible because they are invisible as people say. Oh and also I have lived with chronic migraines for 32 years and the stabbing eye pain in my right eye while having a migraine is debilitating! The last two years I have been unable to work because my migraines and chronic pain have gotten worse. It’s a daily struggle to stay positive but I try. I agree with the feeling alone due to vision issues.

I'm so sorry to hear this. I also live with RA and I'm 23 (diagnosed 6 months ago). Its not an easy journey at all and honestly I've been so overwhelmed. What's been helping me is just focusing on what I can control and expanding on that. I've picked up more stationary hobbies and activities. It's been hard and still is but I've learned that I cant look at other people and compare myself anymore. I also joined a bunch of FB groups so I know I'm not alone and other people can relate. Everyday I have to remind myself that I am doing the best for me and that is more than enough. I hope that things look up for you soon (or the new random drug cocktail your Rheumy recommends works). Wishing you the best and even more after that! RA sucks but we got this!

@@JustTyra21 I don’t think the drug cocktail is working but I’m giving it time. And yeah my mom has it too and I have vivid memories of her fighting with my dad because he would get mad because she couldn’t do something or he had to pick up doing another chore (he eventually got it and is much better now but now that I live with my bf I’m going through the same thing with 0 help). It’s hard some days to still not compare. Like the day I wrote this i had to tell higher ups I couldn’t do a certain job and someone apparently had said “well she will get over it” even though I was told to always tell them. But yeah I had to switch from more physical activities and even painting and drawing to other things as well. It’s definitely an unintended life style change.

Thanks doctor

@Highway Unicorn According to, The Effect of Vision Impairment on Dynamic Balance ( www.ncbi.nlm.nih.gov/pmc/articles/PMC4416186/ ) ,a published medical paper, "The control of human gait and the maintenance of balance depend upon the complex integration of visual, vestibular and somatosensory information. Dysfunction of any of these components can result in deficits in the body’s ability to maintain equilibrium of the centre of mass by counteracting the constant destabilising forces that challenge it. The role of vision in the control of balance is well documented. Vision can improve bipedal upright stability during standing and locomotion as part of the integrated sensory feedback system. Alternatively vision impairment has been demonstrated as reducing postural stability (Collings, Paton, Glasser, and Marsden)." I am not a doctor but I am studying veterinary medicine and I know how to do my research. This is something I've researched previously.

❤️❤️❤️

"with grace and empathy", that's well put!

I hate it . I have fibromyalgia too and it's frustrating for me to deal myself but then people don't believe me or I really want to do stuff but I just can't. I'm 35 now but it started years ago probably far before I was diagnosed and it just keep getting worse. Sometimes I complain because it's all I can do. I don't expect anything from anyone it just helps to say it I guess but people always wanna say what they have is worse or let's switch bodies. I'm like I'm not saying I'm worse or they are not I'm just venting really.

@@suziecarr1566 my cousin and aunt both have it so my family is riddled with it, we have a little group chat just the three of us because it feels weird to complain to some people about it they just don't get it