I lost more vision…
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I'm Molly, a typical sushi, makeup, and fashion loving millennial girl who just so happens to be blind! I was diagnosed with Retinitis Pigmentosa at just 4 years old and began public speaking at age 5. I started just doing motivational speaking, but now I make videos and even model! Even though I can’t see, I know that there are bright spots in everything we face. Let’s find them together. 💕
Thank you for all being on this journey with me.
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 ❤️🌟💕✨
Molly is one of the strongest TH-camrs on this platform, and I love how transparent she is with us 🥺❤️!!
She totally is she has inspired me so much
Aw, thank you
Ikr 🥺💕
I agree she is amazing!!
i think she’s meh
I almost cried when you said just because 2 people have the same condition doesn't mean their experiences are even remotely the same. I've had my disability written off so many times because "so and so has that disability too and they are fine". In middle school, I even had an assistant principal tell me that my hospitalizations weren't real and they wouldn't accept doctors' notes anymore because there was another kid in school with that condition and theirs was less aggressive than mine so therefore I was faking my own hospitalizations. Trust me, I would have much rather been at school than the ER.
Edit: grammar.
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.
I love what you said "the same disease isn't living in the same body". That's such a wonderful way to explain the effect of genetic diversity on illness or medication.
Can't emphasize this enough! Very well said. 👏👏👏
This. This hits so hard. I have RP they think some rare form. Don't know fully yet. I get this. I continously see a difference. I'm at a stage were its continously changing. It's scary. I've been in a slump lately because of this. Your videos bring comfort to me. Thank you for all you do.
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
i'm autistic, and recently i've been struggling with going non verbal, which has never happened. what made me feel better was looking into it more, and realizing i wasn't alone. if this is any comfort to you molly, you're not alone in your experiences, youre not the only person that deals with blindness, and we are all here to listen to you and share our stories. love u girl
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)
@@DifferentReader 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
this breaks my heart, i’m sorry for your loss molly. you are so strong, i’m so proud of you! well done for being brave. i can’t wait to see how you overcome this and continue to uplift and inspire others through it. love you loads, God’s got you xx
Such a great comment Sarah. Hugs to you and Molly 🙂
@@walks_with_me thank you! hope you have a great day❤️
Bless you Sarah. 🙏
“Can’t wait to see”
I went blind only a week ago due to me hitting my eye after fainting. I saw you before this but you’re my person going through this. Thank you for your positivity.
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.
Thankfully you've developed your identity outside of your vision.
You're going to find strength, happiness, and friendship in all walks of life because you've found it in your darkest moments.
Love you Molly ♡
Molly, I know how important your remaining sight is to you. There is no words to comfort you during this time, but I want you to know that we are here for you! ❤️
That is exactly what I feel and couldn't figure out how to say. 10/10 comment.
As an optometry student, I am learning a lot about the clinical and academic side of eye diseases, and I think it is so, so important to learn as much as possible from the people who actually live with them. Thank you so much for sharing your experience! I love the community in the comments too; I can tell you help countless people every day with what you do. That's so awesome.
I personally have a condition that has steadily gotten worse that causes chronic pain, and even though most people and even doctors can't always understand the difficulties, it is always hard when you loose even a small amount of functioning that you may have relied on.
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.
"Just because two people have the same disease doesn't mean the disease is living in the same body". I love that quote, Molly. As someone with an invisible disability myself, people will compare me to others so much in my healing. I will be telling people this perspective!
Molly I am so sorry about that I went through the same thing this week as well and it’s been hard and having to go to more doctors but here’s the thing we will get through this cause as I’ve learned it’s out of our control but will be great cause we are resilient and brave.
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
When my wife passed away four years ago from her disability , I made her an organ donor. Her eyes were used to give someone the gift of sight. I recommend everyone become an organ donor.
I can’t find the right words, so here’s some bees. Lol 🐝 🐝 🐝 🐝 We love you.
Molly: I'm gonna sit and talk to you for 20 minutes
**sees edited video is 16 minutes**
Me: Molly's gonna be late 😂
Exactly what I thought!
Same thing ran through my mind!
You're giving us 'sighties' so much insight into the perspective of a blind person with progressive vision loss. Now I can empathize + do my best to be an ally on the accessibility issues you, so articulately, speak on. 💜
It totally makes sense to me why it would be difficult to lose more vision even if you're already blind. I've learned from your channel that it's not just "blind" or "sighted," there's a whole spectrum and I'm sure it's extremely hard to see this happening - so sorry. Thanks for educating us, Molly!
I love this message: "you never know what someone is going through, so have compassion". I also love that pink sweater vest top!
My chronic pain started in my shoulders and then spreed and now is almost 90% so I completely get how this feels. I now have to walk with a cane and so many people look at me like I’m crazy. People need to understand that even though we can’t do everything we can still do stuff even if it takes time
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
Kindness, compassion & empathy are so important.
As someone who suffers from chronic pain. I like to be as open to others, as they are to me. I share my pain to be compassionate, understanding & supporting about what others are going through. It is so lonely & sad when people then compare themselves to me & invalidates their pain/experiences.
Pain & conditions shouldn't be compared, everyone is valid in their experiences & feelings. Supporting & growing together is beautiful.
Recently my prosthetic leg broke, oh man I was emotional. I was out with my nephew and was crying.
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
As someone who has a degenerative disease, where nobody knows when the episodes will start and how severe they will be, I can sort of imagine how scary it must be to experience what you are experiencing. I'm lucky, in that I haven't been affected by my disease yet, but it could eventually bind me to a wheelchair. It is scary not knowing how or when you will get worse.
I have so much respect for how you are handling your situation and how much grace you have in talking about this and sharing your story with us. I'm sending you so much love.
hi molly! i’m 13 and i’ve been watching you since i was 11 because i was interested in what life was like for blind people. i love your gorgeous outfits and bubbly personality. i have learnt so much from your videos. i really adore you and i hope the best for you. it’s hard for me even to hear about this, so i can’t imagine how difficult this must be for you. you are so strong and you’ve got this far, i don’t believe this is going to stop you.
much love, zoe ❤️
I am legally blind since birth, and have had chronic headaches most of my life. I've known many people who have had RP and many of them have been nearly totally blind by the time they were teenagers. I love watching your videos because you do a very good job spreading awareness about the blind community. God bless you and your family!
God bless you too.
I understand, it is a roller coaster. I have hypermobile Ehlers-Danlos, and some days/weeks, my pain is tolerable, and I can walk with a moderate limp, then I will have a flare up, in excruciating pain, can barely get out of bed, and have to use a cane. I don't know if you experience this, but I have a feeling of claustrophobia in my own body. I feel trapped in a defective body, I can't escape the pain, and it's so immensely frustrating.
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 have Stargardts disease and I am considered legally blind. It’s caused me so much anxiety because the future is a terrifying thing now. I always feel like being alive and growing up is just watching your body fall apart slowly until you finally kick the bucket. I try not to let myself think about it very often (seeking professional help as we speak btw) so hearing you talk about how you feel has me feeling simultaneously not okay and also validated and seen all at once. It means so much to me that you share this with us. I have no idea where I would be without your story.
I’m in physical therapy school and we learned that vision is 10% of balance. We use it in therapy to wall spot, etc. So it would make sense on that front. Much love for you!
Vision loss in my experience is so much more than a physical loss. It’s a loss on every level of your being. I’ve realised I’m not afraid of being totally blind per say, I’m terrified of not knowing how I’m going to experience life on other side. The only solace I have is that every time it’s gotten worse, I’ve adapted and I have loved ones who can help me through. Much love Molly, you’re an inspiration to millions of people, including me ❤️
You look great in pink! It’s gotta be tough to be going through so much change in your life, working on retiring Gallop, and now this is just another thing to cope with. And with the vertigo, you probably feel more physically disabled than you have in the past.
I really can’t imagine, but it’s been hard for me to cope with my disability changing and worsening over time. I really admire your openness and vulnerability on TH-cam. I hope you’re doing well
I am SO sorry you are going thru this. I just discovered your channel. I am 72 and have always been frightened of losing my vision even as a child. More so than death. My reason? I was afraid of eating bugs by accident. I know it’s crazy but it’s true. A childish reason.
A year ago I had an ‘eye stroke’. A eye vein occlusion (bleed) and went thru a year of eye injections and then laser surgery. My vision has gotten worse. My retina specialist says it could go blind. So far, it is only one eye.
After seeing your video today, I feel blessed with 71 years of sight. And I feel ashamed for worrying about myself.
You are very brave and very gracious. I will follow your channel and add you to my nightly prayers. Thank you for snapping me out of my self pity.
Molly, I am so sorry to hear about your losing more vision! The vertigo and dizziness (which are scary enough to experience by themselves) on top of it sounds very scary. Hang in there. My prayers and good thoughts are with you!
Empathy is vital. I had multiple physical issues in my childhood, and the care and compassion were so important and left it’s mark on me. I have such respect for you Molly! The lessons are tough but touching many!
This video hit hard for me. I was just diagnosed with Ankylosing Spondilitis and am on my own coping journey. It is always jarring when your 'normal' just doesn't exist anymore. Constantly having to take self-inventory and be aware of little things that others truly cannot see sometimes. Your journey with your own hidden disability has meant the world to me, as I have gone from a casual viewer interested because of my minor experience with vision loss as a child, to now feeling a deep connection as I navigate a new space and community. Thank you for always sharing the good, the bad, the ugly, and the funny. I hope your continued work goes well! 💛
My Mother has the same diagnosis as yours she is 82 years old now and a constant inspiration to me! I like listening to your story because my mother told me a similar story of her life and how she held on to what sight she had for as long as she had it.
Hers went completely dark at 52 years old. As I write this I am crying and I don’t do that much anymore.
Unfortunately my mother did not have the loving family you have she was institutionalized for over 16 years and that wasn’t good at all.
I love what your doing and wish you all the success in the world.
I am quite sure with this platform you are making quite a difference in this world for sight impaired people.
Thank you I hope you read this and find even more inspiration to keep doing what your dong!
One of the weirdest things about vaccine rollout is everyone is like "let's get back to before" meanwhile deteriorating vision is just totally refusing to be "like before." Your positivity helps me open up about this for myself and this video definitely did not disappoint. Thank you for opening up about this forreal
I am sighted but have had pretty constant problems with my vision (now considered low vision) since head trauma while I was in college. It gets worse sometimes (sometimes temporarily and sometimes permanently) and it's really erratic and hard to predict. I so relate to what you're talking about. Small changes in my headaches/eye pain/double vision just THROW me emotionally. It's exhausting to carry that weight of re-learning your entire life on top of all the other things we're responsible for in our lives. Disabled people are human beings with big dreams and goals and people depending on us, and to carry the weight of what we have to deal with on top of it all is so so so overwhelming sometimes. I am a weepy, unproductive mess every time it happens. Thank you for sharing your experience, for trusting us with your emotions, and for platforming disabled struggles. You really help me deal with my own similar emotions. Hang in there, we're all on your team.
I’m sorry for your loss, Molly. I have been blind since birth, so I haven’t experienced any of those symptoms. I do know some people with RP and have lost vission.
Molly you’re amazing! Support from others is so important. Almost 4 years ago I was in a horrible motorcycle crash that killed my fiancé. I was left barely alive and in a coma for weeks. I also broke my neck and back and shattered my pelvis. I knew I’d have mobility issues in the future so I worked hard to gain full mobility. I was diagnosed with arthritis only 8 months later but we didn’t know how it would progress. Well now I can barely get around and went back to the doctor. I was diagnosed with osteoarthritis and most of my vertebrae are so deteriorated that it’s alarming and causing my mobility isssues. I expressed this to my new husband and he said he knows I was in a bad crash and they knew I’d start to lose mobility. I was told this would happen in my 50’s-60’s. I’m currently 32 and the fact that I’m losing mobility so quickly and the shift in my body and lifestyle is so hard to come to terms with. I wish more people were understanding that even though we know there will be increased loss of function in our disabilities, when it happens it’s incredibly emotional and we shouldn’t have to be crying alone
I’m so sorry to hear that you lost more vision. We are here for you and I know you will overcome and adapt with support from your family and fans.
I‘m so sorry Molly, that‘s such a hard pill to swallow. You are so strong and i truly admire you and how you are able to adapt and overcome whatever life throws at you! I‘m so glad that you have such a great supportsystem and that you‘re taking care of your mental health. ❤️
Vision loss is so incredibly difficult to deal with. I have severe myopia, and have noticed it getting worse. It’s a pretty minor difference, nonetheless terrifying. Thank you for this video, it makes me fell less alone in this “process”. ❤️🐝
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 completely understand how you fell, I have stargardt disease and my vision loss is also progressive and changes. It’s always a new learning curve and also a acceptance to what is happening. You are an great inspiration to me and many. Keep it positive. We are here with you. Thanks for all you share.
Love your videos. 🥰🥰
❤️❤️❤️
I lost part of my balance system to inner ear surgery and had therapy where I learned to compensate with my vision and muscular feedback from my hips, legs and feet. Now I am starting to lose my sight and I find myself worried about vertigo in the future. Hang tough, Molly. I sort of know some of what you are going through and It isn't easy.
I’m 25 and have RP as well. I lost a significant amount in 2020 and am struggling to keep up at work and with my own physical and mental health. I can still see well enough to drive and I’m hoping that my vision stabilizes for a while. I find a lot of comfort in your videos since you talk about your journey and how different everyone’s is, but regardless of that also how similar our experiences can be. Thank you for what you do and for getting these messages across on your platform, while also being so informative on vision loss and RP specifically!
Hey Molly! I don’t deal with blindness but I have a progressive mobility-related disability. I can really relate to the feeling of getting used to what little you have left and it really affecting you when that changes even more. Continually adjusting to a changing body is so hard in so many ways! I love your content I appreciate your honesty so much! Lots of love to you, momma bee, lavender, and gallop ❤️❤️🐝
I never comment but as someone who lives with a chronic disease the message in this particular really hit home. Thank you for reminding everyone not to judge others conditions as everyone is different and dealing with different issues. Thanks again, Molly.
I live with severe RA at 27 years old. The pain isn’t only debilitating but my joints lock up so I literally can’t move or walk sometimes. It’s most significant in my hips, feet/ankles, hands, and back. The only sometimes comfort I get is in a hot bath or laying down in a certain position. I get frustrated because something triggered it about 4 years ago and I still need to work for money but I can barely do simple tasks anymore. I can’t clean for more than 20 minutes at a time. One of my medications actually, a side effect is blindness so I have to get my eyes checked every 6 months. I had to change my dream job because I can’t physically do the labor required and I miss being able to workout and run. I’m very much still processing it every day even though it’s been like this for 4 years. I even had a moment today where I got mad looking at all my coworkers moving effortlessly while I was struggling to stand. At 27 I should be able to do so much more. It’s hard.
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.
Thank you for sharing your journey with us. You teach us so much about the breadth of human experiences, not just yours but also making mention of the many different ways that vision loss can happen and affect people. Most of all, I love how you preach compassion. I wish you all the best in your continued journey of sharing that compassion not just with others, but most especially with yourself. And I hope the vertigo settles down.
I remember each “milestone” of my moms blindness. We grieved each loss and searched for silver linings, eventually. Everyone grieves differently and no one should judge the way you do it. Good luck sweetie.
Hi Molly, I have RP as well, and had a big vision loss about 2 years ago. So similar- balance issues, feeling overwhelmed, pain in my eyes. Just grateful to hear you share. Within the last month I have had another small loss (sigh) suddenly my norm changed again and I’m working on adjusting and accepting. This time ALOT of headaches and eye pain, but not as much balance issues. Thank you for addressing the progressive nature of this eye disease. When we experience loss like this, it’s just a reminder that we have a bit vision for today, And no guarantees for tomorrow. I also work on acceptance and gratitude.👩🦯💕
Molly I honestly felt that even though I'm not blind I felt like I knew how it felt, but didn't; It felt like you got use to what you had and having less of what you already have is very difficult, but I see so much strength in you Molly what ever you go throw I believe there will always be a positive said to it even if there is an negative side. You have a impacted on a lot of people and even me.❤
this put something i've been thinking about into words. thank you for being vulnerable and sharing this, because i know it's not always easy to do.
i've had tics for a long time, but the stress of lockdown has made them significantly worse. what used to be mild, usually non-painful motor tics developed over the course of a month or two into what is probably tourettes (still working on a diagnosis), and it's been pretty rough dealing with that on top of exams and the pandemic.
tics appear and change all the time, and while i try my best to keep up and take it in stride, it's not always easy to adapt to. some tics like flexing a muscle without moving much go unnoticed by people around me because it's subtle, but can tire me out and cause soreness after a day of it. as well as that, even smaller things like the wording of a phrase i repeat changing slightly can be stressful as i lose some of the familiarity and consistency that's dfficult to find with this condition.
Thinking of you friend ❤️ thank you for being so raw and open with us and taking the time to educate us. I’ve learned so much. 🙏🏼
Thanks for sharing. I appreciate how you talk about the different ways it affects you aside from just a change in vision, for example you talk about your challenges with balance. A part of my experience with a disability that changed over time was that it was difficult to accommodate myself and to ask others to accommodate me because I did not know how my accommodation needs would change over time. I heard a few people say to me, "You need to tell me what you need." I felt frustrated by that because it was said to me in times where my needs had suddenly changed and I was realizing it, processing it, and coming to terms with it and it wasn't just as easy as handing everyone a pamphlet explaining everything I would ever need. For awhile I felt like I did not want to participate in life because I wanted to avoid this issue. Then I worked on my confidence and decided that I deserved to keep showing up for life even when all of this was happening. So I kept showing up and somehow no one really stopped me.
Praying for you. You are more than your vision. You are so strong. You make me feel less alone. I have hydrocephalus and also a disability. It isn't easy. But you are definitely a youtuber who doesn't get enough credit.
Watching your videos, especially ones like this, has been very helpful for me right now. I’ve been having a lot of vision problems. I see double intensely, I get horrible migraines almost every day, and I get very weird head feelings a lot. I’ve been to a doctor and have had an MRI and they don’t know what is wrong and they said they most likely never will. I have to wear prism glasses at the highest intensity possible and that said when that stops working, I will have to have surgery. Thank you for talking about things like this. It helps me a lot to see someone dealing with vision loss and being so strong, kind, and successful! I love you Molly!
Awe I’m sorry molly!❤️ sending hugs
I am so sorry Molly. Not just the vision loss, but the eye pain, and the headaches. I have several chronic conditions and I have had to take painkillers for days this week to manage other-wise unbearable headache pain along with other symptoms and it sux. Its so much more difficult to live your life. Im sorry you are going through this. I hope those who love you and are around you are able to soften the pain.
This title is me recently too. It’s rough losing more vision I know what your going through and your not alone Molly! We love you!!! 💜
I just want you to know I greatly appreciate you being so open with everything you're going through. I have a grandmother who's gone through the same vision loss as you have but she's very closed off about it. My mother told me what happened from her perspective of watching it happen and my grandmother only talks about her strengths in it (how much light/shadow vision she has, how and why she looks at people and things, how *no one* ever realizes she's blind until she tells them or has to walk around unfamiliar places). But your video has really helped me to understand much more of what she's gone through and what we might be expecting in the future. Communication is so important but she's very prideful and wants to show she's strong. So thank you so much for sharing and helping educate us all ♥
When you're dealing with chronic health concerns, small changes in either direction can have such a big impact on your self-esteem, mental health and self-image. My Mum has a systemic autoimmune disease (one uncommon enough that it has no name) that among other body systems affects her joints, particularly her spine. When she went from being able to walk with a stick to having to occasionally be pushed in a wheelchair, it really threw her for a loop. It's as if her external identity was now Woman in Wheelchair. Officially Disabled Woman. It was really hard for her, but also tough to see her go through it, especially to see her struggle to avoid the dreaded wheelchair and end up in more pain.
I have also found that if you have a mental illness, physical health changes can have an impact.
For example, I'm very short-sighted and had a change in my optical prescription lately, after being stable for a long time, and even that small change (which is mostly correctible with glasses) after years has thrown me a bit. I'm literally just more myopic and astigmatic than I was 2 years ago. But it just starts my brain off on the track of "What does this mean? Is it caused by my medication? What if they can't correct it in the future? What will I do if I can't drive to work? How will I cope?"
Your description of the process of losing site gradually I totally relate to. I have experienced all the related symptoms that you described, like headaches fatigue and vertigo. Thank you so much for sharing your experiences. They are very uplifting and encouraging.
You got this, Molly! You've got through it once, and you'll get through it again. Plus, you're strong!
Thank you for allowing yourself to be vulnerable online. It’s probably very scary. Your courage and compassion are very comforting to more people than you can possibly know. God bless you, young lady
My thoughts and love are with you Molly, I am so sorry you’re going through this but you are so incredibly strong. Your vulnerability and truthfulness does not go unnoticed and I am so grateful to you that you choose to use your time to educate and make people feel less alone. All my love as always ❤️❤️❤️❤️
Molly, you'vr helped me so much through my sight loss journey. I found you by chance when I first began losing my sight, and I've been following your journey ever since. Thanks for speaking out so openly and honestly as you always do, and I hope your life continues to be everything you want it to be and more. 💙⭐🌈
I have had meniers since age 12 and at 14 had a vertigo attack that never really ended. It's hard to tell people that I just got used to it. I have a mobility handle for my service dog that helps, it's a vertical handle, might be helpful with the new service dog if they can walk right at your side when your having vertigo
Very true that even small changes mean a lot to us. For me my illness changes in severity a lot. Some days I'm really okay and other times things are very very bad. And because it's invisible, no one sees but me. Thank you for sharing. We need solidarity. You're not alone.
you are so strong!! you're story is so inspirational and I think everyone watching this video can agree that you can make it through anything and continue to get stronger ❤
I have chronic illnesses (several) and I'm very thankful for what you said about compassion. And I 100% get what you mean by small changes making big impacts on our lives. We already live a delicate balance of meeting our needs while navigating a world that doesn't accommodate us and bodies that don't want to cooperate with us. It's a matter of learning by trial and error what *will* work for us. If anything changes, it means we have to find a whole new balance. It can throw several other things out of whack. It can cause confusion and pain. More trial and error to find an entirely new way to function under the new set of rules and needs.
Even if it's not a difficult change per se, it's still a mental strain and moving out of our comfort zone. Emotional stress can cause pain and worsening symptoms too, not to mention just walking around holding this renewed fear in our hands: Am I going to lose more? When? How far will it go? How will I adjust? What if I can't?
Recently my fibromyalgia decided that if I do anything with my hair, even a simple ponytail, I will get immense pain. It came out of the blue, and then it kept happening for months. It's not a change that really makes a difference in my ability to live, but it did make me feel out of control. I love my hair, and it's...really sad. I had to cut it much shorter because I couldn't put it up at all. It's a loss of control, trying to cope with new pain, worrying whether that's gonna happen with something else and what will it end up being. I've had many others and worse, in my time, but this is the most recent one.
Thanks for this video.
When you spoke about how many diseases present/progress differently in each person, I really felt that aha. I have Crohn's Disease, and it really is different for every person, in terms of severity, what part of the digestive system is effect, what medication/treatment is effective. What works for one person isn't guaranteed to work for another.
I literally scrolled through the comments to find someone who mentions Crohns. The unpredictability is probably the worst thing about the disease. You'll be 100% fine and function properly one day, and the next have multiple bathroom trips and cramping and bloating. This illness has taken such a toll on me mentally as well as physically. It has also worsened my self image as i've developed body dysmorphia. I dont know what I truly look like and having days where I am bloated and feel extremely overweight vs days where im not bloated at all and feel thin. Not to mention knowing that one day the medication im currently on will just stop working and I'll need to find something else to help me function, or at worse get surgery. I also tend to keep things to myself to not stress out or worry my loved ones. I hope your doing okay with your version of the disease. Much love to you.
It probably sounds crazy for most people, but a quick Google search will reveal that the carnivore diet is really effective at treating Crohn's disease, you should give it a 30 day trial.
@@Gengh13 and cue my least favourite thing people do: give me unsolicited medcial/dietary recommendations. Thanks but no thanks. I have a great doctor and am in remission and doing fine.
@@NoSoulBon if what you are doing works for you, keep doing it, I just present options to people that are not doing well and I say things that I would have loved to hear from my doctor, it would have saved me a lot of pain and time.
You're so accepting and always encouraging others to be the same. You're such a gem.
It's hard to predict what changes in someone's disability will hurt them. I have multiple disabilities. My vocal tics have increased and people have been really sympathetic, but I'm not too bothered.
Am I the only one that loves the way Molly says “process”
We love you no matter what
Stay strong!
And early congrats for 2 mil!
I'm sorry Molly, I'm horrified about you losing more of your vision, but, you are strong and hopeful for the community. You are one of the bravest TH-camrs I've watched throughout the years and you have inspired me throughout the terrible times and I hope that you can overcome this situation and I love your videos!
I have vertigo and I cant imagine having vertigo while also being blind. Cause the way I usually cope with vertigo is focusing in a fix spot. I hope it gets better. Sending good thoughts your way.
Hi Molly,
Thank You so much for sharing your story and I am very sorry for your loss. It is difficult to cope with, but it takes time. It is like grief - and will sneak-attack. Take care, look after yourself and take time.
I also have RP. Eye pain and headaches are the regular for me. Thankfully, I can still see fairly well - I had a steep decline as a child, now into my 30s, but have been losing colour vision and 'sharpness' more recently. Hopefully I can stay stable and not see another sharp decline. Stay safe, stay well. xxx
Your balance issues are related to the vision loss. Eyes and vision tell you where you are in space more than anything else so when you have significant changes it will affect balance.
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.
Thank you Molly for sharing your story. I was diagnosed with RP about 4 years ago at 32 years old. Although, I most likely had it prior but like you said, our bodies adapt in crazy ways. I get headaches and dizziness as well. I also get eye pain, flashing lights, light sensitivity, and more tiredness as well. love you, this really helps me and exactly what you said, most people in my life wouldn't know!
You'll get through this! I've never known someone so determined and strong until I met you. I'm here for you and with you💜 I love you Molly💞
I have rheumatoid arthritis and I felt this video so hard. Every time a new joint is affected or starts deteriorating it's like I have to process my disease all over again. This year I started having deterioration in my neck and that has been life changing and so difficult. When you have a chronic illness, it isn't just a one and done you find out, you process that, you're good kinda situation. We are constantly having to come to terms and acceptance with out every changing disease. Thank you for this video and all you do, it really helps the rest of us to see you thriving and allowing yourself space and time for acceptance and emotional healing. ❤️
I live with chronic illness and totally get the impact of even a small change or relatively mild diagnosis.
I’m sure you know that some of your additional symptoms could be down to the trauma of losing more vision. My mental health took a nosedive when I was diagnosed with arthritis in my spine a few years ago. In terms of the impact on my life, on its own it’s relatively mild but it still hit me hard and my fibromyalgia became worse.
I live with C-PTSD and think it’s caused my limbic system to go on the fritz and that is the root of my fibromyalgia. This idea is beginning to be discussed more, now. There’s early evidence that this process can also lead to other types of chronic fatigue, multiple chemical sensitivity, electro sensitivity and more.
As it happens, my wife had vertigo for 9 months after a particularly stressful time and there was no obvious cause, even after an MRI and various other tests. It’s only in retrospect and given doctors couldn’t say why she was so dizzy that we joined the dots to her past trauma.
If you’re interested in learning more, I’d recommend a book called “The body keeps the score”. It’s available on audiobook.
Sending you lots of love and encouraging noises. You got this, girl!
when i first came to your channel i thought you were lieing about being blind cause im ignorent and i allways thought stereo types were the normal for blind people but i started to relize that you are not lieing and you have helped me see that stero types are not the norm for blind people that was 2 years ago and you have helped me learn about blindness and be a better person and i cant even imagion how you feel : (
That sounds like an incredibly hard week, Molly. Sending lots of love ❤️
So just found your channel. I have been legally blubd since I was 13. I am a sighted blind person. I was at the time the youngest person in the US with Age related macular degeneration.
My vision hasn’t really hasn’t changed in the last 25 ish years.
Your video was very encouraging.
I have fibromyalgia which has progressively been getting worse to the point I'm on some heavy duty painkillers, it's horrible to exist I hate it. I'm jealous of those around me who can do things they love. I miss hiking, kayaking, horse back riding, walking to the shops with my friends. I'm 21, I want to do things a 21 year old should be doing. I get to walk slowly around the block or walk to the park to sit on the bench. If it gets any worse I could very easily in a wheelchair. If you look at me I look normal, just like Molly, people can be really judgy when they see me using things that are meant for my use such as the disabled restroom, or the disabled entrance, or skip the line at my local restaurant who have a discount and like skip for those with disabilities on certain days of the week. I'm no longer the 18 year old who was willing to do pretty much anything, I'm 21 I spend a lot of my time at home watching youtube and hoping that maybe one day in the near future there is a cure.
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
You are so lucky to have your mom around so much it seems like you guys have a lot of fun together. Reminds me a lot of spending time with my mom 💕
You can get tiny food processors, that work as choppers for onions and other veggies. Super compact, convenient, and usually dishwasher safe. Worth considering if you’d like to try more cooking!
I see you as such an inspiration. I discovered your channel when I discovered my eye condition was getting worse . Your videos really helped, especially the adaptive technology videos. Thank you for sharing your experiences and I’m so sorry that you’ve lost more sight.
Sending you love, Molly! ❤️
Molly you’re vulnerability is your strength. Your ability to explain and educate with clarity, compassion, and empathy is your super power! Love you🥰
Thank you for always being so open. Watching you overcome struggles inspires me in overcoming my own 💗
I know exactly what she’s saying. When I lost my hearing, I adapted and got used to using what hearing I had. A few days ago, most of my remaining hearing was gone. Now I’m more stressed trying to strain to hear people. I get you, Molly.
Never clicked so fast, hope you’re okay!❤️
Thank you for your open and transparent journey. I identify with you and I agree, my RP journey is a family path.
That’s scary! I almost lost ALL of my vision in 2017 and 2013. Not just from Retinopathy of Prematurity and being born with legal blindness. Part of it was Glaucoma and other things. It’s more controlled from surgery now, but I explained my experiences more in-depth video on how it went down.
wow you have ROP too? I have this as well from being so prem (18 weeks premmie, my mum was 22 weeks and 2 days pregnant when i was born) plus a lot of other conditions not just with my eyes, but last year I had a small vitreous gel detachment in my right eye and caused me to have a lot of floaters and blurriness. it was so hard to see out of it and it was the scariest thing that I have experienced to date with my vision, my prescription for my left eye is -10 and my right is -18 so yeah. Now it's stable and we just have to monitor it but still really scary and im 26 so I am thankful I have the sight that I do have. What surgery did you have? cos my ROP doctor doesn't want to touch my eyes at all if it can be helped because of the intense scarring.
@@BecxCozyCorner I had a cataract surgery 4 years ago called an Intraocular Lens implant. It’s a thinner lens that’s put in the back of the eye. My thicker/natural lens was slowly deteriorating. Plus, as a premature baby, mine was getting to big and my eye pressure was going up to high. Link to the video: th-cam.com/video/Kea3-alOUvE/w-d-xo.html
@@ChristianSullivan oh yeah I've looked into that a few years ago and they can't do that for me because my eyelids are too small for my big eyeballs and I didn't have insurance plus your prescription has to be stable for 2 years so for me it wasn't worth the hastle and added trauma of surgery but im glad your doing well, how prem were you? It's nice to talk to someone who also has ROP my dr says im at least stage 3
@@ChristianSullivan and they said normally its reversible but for me its not so there was that too
@@BecxCozyCorner I didn’t want to risk going blind because I would be devastated. It only gives you full eyesight, if you don’t have any other medical condition with your eyes. It still worked on me though. I still wouldn’t change my disability. I’m happy with the way I am!
You are so eloquent, Molly. I appreciate you sharing your experiences. I have MS and lost the vision in my right eye after the medication I was prescribed made me more susceptible to shingles. I got shingles behind my right eye,this developed into Acute Retinal Necrosis, which has destroyed my retina. I am experiencing lots of visual disturbances, eg, flashing lights, flickering etc and was interested to hear you mention this. Thanks 💗
I just recently got to the point with my hEDS that my PT wanted me to get a cane to use when my knee feels unstable. I was diagnosed a few months ago, and knew this was a possibility, but was hoping to make it to 30 before then... nope, 3 months later, just after my 26th bday 🙃
Yesterday was my first day using it while outside my apartment, and it was really overwhelming cuz I don't look sick, I still work a serving job, and I still walk pretty fast.