They keep saying “You CAN do these tasks, you aren’t disabled.” I keep staying “Yes I CAN, BUT that doesn’t mean I am not in PAIN or sustain INJURY from doing these tasks.” They won’t (so far) support me in finding a job that appropriately fits my physical abilities. Until then I work at a laborious job and will slowly begin cripple myself. I can thank the healthcare system for that.
I can relate to that struggle. It took me 4 years to get benefits from social security disability. They deny everyone regardless of the concrete data you give them. You have to keep appealing until you are able to get in front of a judge. Because I had no choice but to go back to work part time for a couple months at a time they refuse to count that time for your backpay so my 4 years of disability ended up getting a back payment of about 1 year but i'll take it. The healthcare system fails almost everyone who isnt going to heal on their own. they create customers and dont look at problems rather treat symptoms.
You said everything I have tried to say but never could this is 💯 percent me everyday l open my eyes thank you so much ‘you have a lot of insight to this syndrome Gods blessings to you and yours 🙏💜🙏💕❤️🌹🙏🇺🇸💕💕
I cant say enough about what this video means to me. We, the people suffering from this syndrome should make more videos similar to this. This is a war and we are surrounded by people that dont know, cant imagine or fathom what our reality actually is and some think they understand or that we are exaggerating. Its not their fault but yet we should not be diminished or left to feel so alone simply because its an uncommon condition. We need as much, compassion, support, acknowledgement and concern in all areas of life and encouragement as we can get. We also need not to suffer alone. I am a christian and I do believe heaven must really be bliss. I have to hope and believe in that because the amount of physical and emotional suffering that I endure from this condition feels so extreme. I spent so many years undiagnosed but dealing with all kinds of traumas, ailments, chronic pain, surgery, you name it. I have spent so much money trying to treat and heal myself only to find out its incurable, rare, and still has a lack of information or treatment options to really alleviate it. Devastating. But with this video and what they know so far medically gives me hope that I wont always feel so isolated and alone in this. I hope the community of the sufferers grows and we can collaborate and communicate on social media to validate and support each other as we battle this beast. Thank you 🙏🏼
I just want to say to the HMSA, EDS UK and the producers of this short film a good and proper well done with much respect to all parties - I commend you for highlighting such brilliant awareness of Hypermobility Syndrome and its subcategory conditions. The reason why I say this is because I was personally diagnosed with HMS in 2016, age 33 years old, after a podiatrist in Wigan did the most thorough updated assessment of a condition I was diagnosed with in 1986 at 3 years old, this being Flat Feet. It wasn't until 2 years ago that I learned that there are several types of Flat Feet and not just one set type and that's it - this was after having some footwear problems at work with my self-employment as a professional distributor and promotion marketing assistant, being on my feet a lot and getting a heck of a lot of exercise that makes a gym membership pointless (the envy of many, lol!). I had known that I had been double-jointed or 'hypermobile' since I was a kid, but my late Grandma and myself had no idea that being double-jointed could be a sign of serious health problems. I feared for my current work and career after getting diagnosed with HMS, but the HMSA website along with a support group online via Facebook and along with the support of my GP, the fantastic Jackie Tao, the podiatrist who really has helped me to continue doing the job I love and have been doing so for more than 10 years, and the lovely Charlotte, who was my physiotherapist, have all made me realise that with the right support you can still enjoy doing what you love, just learning to pace yourself instead of overdoing it and pushing the body too hard. The support network has helped me get my head around understanding and coping with my condition. You shouldn't be scared of asking for help if you need it. Please keep up the good work and thanks for helping me too. x
"I'm fine" - a line I have heard a thousand times as I look at a splinted hand, strapped shoulder or an uncertain gait. I am blessed to live life outside the EDS enclosure and perhaps I may never ' understand" but your video helped me along the way to appreciate the strength and courage of a graceful gentle "Zebra" The world would surely be the poorer if we were all horses! Thank you.
I never cried so much while watching a video. This is who i am. This is a burden for me. People just dont see it. I also didnt see it for a long time because people told me its normal, and that i shouldnt worry. But i am in pain everyday, and i cant do anything about it. And i cant tell people either because they think i exaggerate it or that i do it for attention. It hurts everyday, both physically and mentally
Well done! Thank you for explaining so well how we are tortured every moment of every day. Especially how you explained trying to sleep. You put described me exactly.
This must have been so much work to create. You’re really talented. This story is so familiar and is everything that is hard to put into words. Even the story arc in this video feels like the battle we face. Thanks for making this!
I couldn’t have said this any better. Thank you for being a voice to explain to others what we go through every day. I get it. If you ever need to talk connect with me on fb. Keep fighting. X
Thank you so much for your work. I have some of these condition but by far not all of them. It must be very hard physically and emotionally exhausting. Awareness is the key and getting doctors to think out of the box. Symptoms for which there are no explanations still exist and need to be addressed!!!
My life. I’m 41 and been misdiagnosed and gave up so many times, I tried this last time and with the P/T injuring me and having an attack in front of them and finally getting an MRI to show the damage it’s done in my neck (Pinched nerve roots, bone spurrs, military neck/straight neck, disc degeneration, uncovertebral joint hypertrophy, arthritis) they are finally taking my issues seriously and with doing research myself I see I am not crazy, It’s not just that I’m depressed or lazy, I do hurt, have aches, get dizzy, have migraines, can’t sleep, have brain fog, blurred vision, heart palpitations, clicking and popping joints, etc..etc. It’s been the hardest journey but I have hope I will be properly diagnosed and hope to just manage so I can get through the rest of my life the best I can. Hope anyone dealing can do the same. ❤
This says so much about how I've felt for so long and even now with a diagnosis the say its stress and send me on my way. Its so hard to meet people that are truly try to get to know me and not to pass judgement right away. I stay in pain and have more bad days the older i get
With the greatest of respect, "I'm fine!"...is what other people want to hear, but not pro-active enough to trick your own brain. I am strong; I am flexible; I am resilient; I am elastic; I am solid; I am expansive; I am self - creative; I am regenerative; I am fearlessly beautiful; I am motivated; I am energetic; I am grateful; I am determined; I am boundless etc;...(create your own list because we are not naturally predisposed to believe anything about our human potential...we limit ourselves or open up our full potential with the language we use, from the moment we open our eyes every morning, to the moment we lay down to repair and replace cells.every night. That's what the brain is for! You do not have to believe any of it at first - but after a while your brain and body will begin to get the message. Best to begin with 3 or 4 and slowly add to your list as the minutes, hours and weeks go by. Start talking yourself around now...why wait?
What utter, utter tosh. This is basically victim blaming dressed up in false positivity. "If you're still sick, you're not trying hard enough to 'trick your brain'..." What?! GTFO
Strangely enough, I've been telling my joints that they're strong since the first time I read your ridiculous comment and they still dislocate every day and it's still really bloody painful. Next time you dislocate a joint or break a bone just remember to tell yourself that you're pretty and motivated and then, of course, all the pain will go away. Okay, Micheal? You foolish little man.
That's rather patronising. "You're brain will make you better"(sic). No. It. Fucking. Won't. This common misconception that every illness is intrinsically 'psychic' and all we have to do is "think happy thoughts" to be healed, does far more damage than you realise. Read a book call "The Inflamed Mind" and you'll discover that pain is not "all in the mind". My previously dislocated shoulder, two broken ankles, torn cartilage, twisted knees (I was born with them), and ruptured spinal discs are simply me being "flexible". The pain i suffered for nearly two years was "all in my head" until I couldn't feel anything below my waist. The bulging disc had ruptured due to physiotherapy ignoring me when i told them the exercises were making things worse and it wasn't sciatica. The chronic pain I feel every day isn't me being "strong". It's me coping as much as I can without crying. It's me finding out after years of agony that I have a form of arthritis that is hereditary and looking at my medical records, began in my childhood, but was brushed off as "growing pains". My pain and injuries are not psychosomatic. I did not wish this upon myself. The crohn's disease and associated problems are debilitating both physically and mentally, but hey, don't worry, I'm "creative" at hiding the pain, eh?
At risk of being terribly unpopular here, I'm going to agree with Michael. The language we use to describe ourselves does affect our psychology and our physiology. Will positive words change the hypermobility syndrome? Highly unlikely! (And, if it could, it would take years, not one try.) But building a positive outlook can keep the individual who is suffering from suffering the collateral damage of such a disease. The collateral damage is the broken dreams and the broken relationships and on and on. Those can be addressed with reframing one's expectations of oneself and others. Acceptance of what is yours (we all have something) and learning how to optimize your life in spite of that is the key to ability versus disability. Stephan Hawking is an example. He was dreadfully and horribly locked in his body and yet he exceeded so many limits of expectations. Working on a positive mindset is essential after trauma and disability diseases have hit - that's not the same as victim blaming and calling the disorder psychosomatic.
They keep saying “You CAN do these tasks, you aren’t disabled.” I keep staying “Yes I CAN, BUT that doesn’t mean I am not in PAIN or sustain INJURY from doing these tasks.” They won’t (so far) support me in finding a job that appropriately fits my physical abilities. Until then I work at a laborious job and will slowly begin cripple myself. I can thank the healthcare system for that.
Thank you
I can relate to that struggle. It took me 4 years to get benefits from social security disability. They deny everyone regardless of the concrete data you give them. You have to keep appealing until you are able to get in front of a judge. Because I had no choice but to go back to work part time for a couple months at a time they refuse to count that time for your backpay so my 4 years of disability ended up getting a back payment of about 1 year but i'll take it. The healthcare system fails almost everyone who isnt going to heal on their own. they create customers and dont look at problems rather treat symptoms.
Also "Yes I CAN, BUT it wears me out faster than I can RECUPERATE from, and the strain just keeps accumulating until I BREAK"
This made me cry because it's the first time in a long time I felt validated and what you said was almost as if you were in my body
You said everything I have tried to say but never could this is 💯 percent me everyday l open my eyes thank you so much ‘you have a lot of insight to this syndrome Gods blessings to you and yours 🙏💜🙏💕❤️🌹🙏🇺🇸💕💕
This is exactly how I feel!! Thank you for articulating what I couldn’t.
I'm so glad someone could say it....I can't say these things aloud. But I cried when I watched this. This is me.
I cried too. It’s everything I feel and everything I can’t explain
Both of you - feel pleasantly hugged.
I cant say enough about what this video means to me. We, the people suffering from this syndrome should make more videos similar to this. This is a war and we are surrounded by people that dont know, cant imagine or fathom what our reality actually is and some think they understand or that we are exaggerating. Its not their fault but yet we should not be diminished or left to feel so alone simply because its an uncommon condition. We need as much, compassion, support, acknowledgement and concern in all areas of life and encouragement as we can get. We also need not to suffer alone. I am a christian and I do believe heaven must really be bliss. I have to hope and believe in that because the amount of physical and emotional suffering that I endure from this condition feels so extreme. I spent so many years undiagnosed but dealing with all kinds of traumas, ailments, chronic pain, surgery, you name it. I have spent so much money trying to treat and heal myself only to find out its incurable, rare, and still has a lack of information or treatment options to really alleviate it. Devastating. But with this video and what they know so far medically gives me hope that I wont always feel so isolated and alone in this. I hope the community of the sufferers grows and we can collaborate and communicate on social media to validate and support each other as we battle this beast. Thank you 🙏🏼
Yes.
Ditto to everything you said. It’s so f’n hard to accept. Everyday is a struggle. - Tammy from Massachusetts
This is what we go through daily. Thank you for saying it out loud.
A very moving story and this rings true for me as I'm sure it will for many people with HSD, hEDS and other EDS types. ❤
Thank you for making this, this is EXACTLY how I feel. No-one sees what’s going on inside or under the clothes.
This is so good. You are speaking for so.many of us.
People tell me I'm lucky to have hypermobility... No
Yep...I have been asked if there are any drawbacks...
Very powerful- overcome and crying- thank you so much for sharing
I just want to say to the HMSA, EDS UK and the producers of this short film a good and proper well done with much respect to all parties - I commend you for highlighting such brilliant awareness of Hypermobility Syndrome and its subcategory conditions.
The reason why I say this is because I was personally diagnosed with HMS in 2016, age 33 years old, after a podiatrist in Wigan did the most thorough updated assessment of a condition I was diagnosed with in 1986 at 3 years old, this being Flat Feet. It wasn't until 2 years ago that I learned that there are several types of Flat Feet and not just one set type and that's it - this was after having some footwear problems at work with my self-employment as a professional distributor and promotion marketing assistant, being on my feet a lot and getting a heck of a lot of exercise that makes a gym membership pointless (the envy of many, lol!). I had known that I had been double-jointed or 'hypermobile' since I was a kid, but my late Grandma and myself had no idea that being double-jointed could be a sign of serious health problems.
I feared for my current work and career after getting diagnosed with HMS, but the HMSA website along with a support group online via Facebook and along with the support of my GP, the fantastic Jackie Tao, the podiatrist who really has helped me to continue doing the job I love and have been doing so for more than 10 years, and the lovely Charlotte, who was my physiotherapist, have all made me realise that with the right support you can still enjoy doing what you love, just learning to pace yourself instead of overdoing it and pushing the body too hard. The support network has helped me get my head around understanding and coping with my condition. You shouldn't be scared of asking for help if you need it.
Please keep up the good work and thanks for helping me too. x
I agree with your praise.
I'm a zebra too. It hurts. All the time.
"I'm fine" - a line I have heard a thousand times as I look at a splinted hand, strapped shoulder or an uncertain gait.
I am blessed to live life outside the EDS enclosure and perhaps I may never ' understand" but your video helped me along the way to appreciate the strength and courage of a graceful gentle "Zebra"
The world would surely be the poorer if we were all horses!
Thank you.
I never cried so much while watching a video. This is who i am. This is a burden for me. People just dont see it. I also didnt see it for a long time because people told me its normal, and that i shouldnt worry. But i am in pain everyday, and i cant do anything about it. And i cant tell people either because they think i exaggerate it or that i do it for attention. It hurts everyday, both physically and mentally
Well done! Thank you for explaining so well how we are tortured every moment of every day. Especially how you explained trying to sleep. You put described me exactly.
Well done and exactly how it is
Such a well produced video, and so frighteningly true.
This! This is me. A different set of specific issues, but the part about consistent pain is absolutely me.
You helped me very much thanks I suffer this horrible disorder
This must have been so much work to create. You’re really talented. This story is so familiar and is everything that is hard to put into words. Even the story arc in this video feels like the battle we face. Thanks for making this!
I couldn’t have said this any better. Thank you for being a voice to explain to others what we go through every day. I get it. If you ever need to talk connect with me on fb. Keep fighting. X
its the words I could never figure out how to articulate that really helped me. Thank you
I listen to this daily to get me threw the day
Thankyou,you just said what i go through every day..🤗
Beautiful said!!!! 😍 I also have hEDS and sharing and saving this video. Made me tear up but said so well! 🖤
I shared it, too.
Winning is staying here to fight another day. My daughters and you are Powerful Mulicolored Zebra Warriors!!!
That’s so powerful so validating such a good way to explain makes sense I relate so much
Thank you
Spot on ! Thank you xx
Thank you so much for your work. I have some of these condition but by far not all of them. It must be very hard physically and emotionally exhausting. Awareness is the key and getting doctors to think out of the box. Symptoms for which there are no explanations still exist and need to be addressed!!!
My life. I’m 41 and been misdiagnosed and gave up so many times, I tried this last time and with the P/T injuring me and having an attack in front of them and finally getting an MRI to show the damage it’s done in my neck (Pinched nerve roots, bone spurrs, military neck/straight neck, disc degeneration, uncovertebral joint hypertrophy, arthritis) they are finally taking my issues seriously and with doing research myself I see I am not crazy, It’s not just that I’m depressed or lazy, I do hurt, have aches, get dizzy, have migraines, can’t sleep, have brain fog, blurred vision, heart palpitations, clicking and popping joints, etc..etc. It’s been the hardest journey but I have hope I will be properly diagnosed and hope to just manage so I can get through the rest of my life the best I can. Hope anyone dealing can do the same. ❤
This says so much about how I've felt for so long and even now with a diagnosis the say its stress and send me on my way. Its so hard to meet people that are truly try to get to know me and not to pass judgement right away. I stay in pain and have more bad days the older i get
Oh my goodness, what an amazing video. I don't know what else to say, but...wow.
Excellent in all aspects. Sorry you suffer so. I get it (unfortunately). #ZebraStrong
So beautifully explained. ❤
I experience everything that was mentioned in this video. I’m trapped in my body. It’s a hopeless feeling everyday.
Beautiful
This story is about Me.
You are a young zebra, I'm an old one. It hurts more and more...
When any part of my body hurts, my whole self feels pain and it's the only thing I can think of... 😔
The EDS society is great.
Real
Thic
With the greatest of respect, "I'm fine!"...is what other people want to hear, but not pro-active enough to trick your own brain. I am strong; I am flexible; I am resilient; I am elastic; I am solid; I am expansive; I am self - creative; I am regenerative; I am fearlessly beautiful; I am motivated; I am energetic; I am grateful; I am determined; I am boundless etc;...(create your own list because we are not naturally predisposed to believe anything about our human potential...we limit ourselves or open up our full potential with the language we use, from the moment we open our eyes every morning, to the moment we lay down to repair and replace cells.every night. That's what the brain is for! You do not have to believe any of it at first - but after a while your brain and body will begin to get the message. Best to begin with 3 or 4 and slowly add to your list as the minutes, hours and weeks go by. Start talking yourself around now...why wait?
What utter, utter tosh. This is basically victim blaming dressed up in false positivity. "If you're still sick, you're not trying hard enough to 'trick your brain'..." What?! GTFO
Strangely enough, I've been telling my joints that they're strong since the first time I read your ridiculous comment and they still dislocate every day and it's still really bloody painful. Next time you dislocate a joint or break a bone just remember to tell yourself that you're pretty and motivated and then, of course, all the pain will go away. Okay, Micheal? You foolish little man.
That's rather patronising. "You're brain will make you better"(sic).
No. It. Fucking. Won't. This common misconception that every illness is intrinsically 'psychic' and all we have to do is "think happy thoughts" to be healed, does far more damage than you realise. Read a book call "The Inflamed Mind" and you'll discover that pain is not "all in the mind".
My previously dislocated shoulder, two broken ankles, torn cartilage, twisted knees (I was born with them), and ruptured spinal discs are simply me being "flexible". The pain i suffered for nearly two years was "all in my head" until I couldn't feel anything below my waist. The bulging disc had ruptured due to physiotherapy ignoring me when i told them the exercises were making things worse and it wasn't sciatica.
The chronic pain I feel every day isn't me being "strong". It's me coping as much as I can without crying. It's me finding out after years of agony that I have a form of arthritis that is hereditary and looking at my medical records, began in my childhood, but was brushed off as "growing pains".
My pain and injuries are not psychosomatic. I did not wish this upon myself. The crohn's disease and associated problems are debilitating both physically and mentally, but hey, don't worry, I'm "creative" at hiding the pain, eh?
That. Is. Fucking. Rubbish. Rubbish by a deluded moron who knows nothing.
At risk of being terribly unpopular here, I'm going to agree with Michael. The language we use to describe ourselves does affect our psychology and our physiology. Will positive words change the hypermobility syndrome? Highly unlikely! (And, if it could, it would take years, not one try.) But building a positive outlook can keep the individual who is suffering from suffering the collateral damage of such a disease. The collateral damage is the broken dreams and the broken relationships and on and on. Those can be addressed with reframing one's expectations of oneself and others. Acceptance of what is yours (we all have something) and learning how to optimize your life in spite of that is the key to ability versus disability. Stephan Hawking is an example. He was dreadfully and horribly locked in his body and yet he exceeded so many limits of expectations. Working on a positive mindset is essential after trauma and disability diseases have hit - that's not the same as victim blaming and calling the disorder psychosomatic.