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#Hyperresilient Reel by @dazzlewithheds (verified account) - "Things people say to those of us with hEDS… and why they hurt." 💬💜 "But you don't look sick." "I wish I were that flexible." "Have you tried yoga?
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@dazzlewithheds
“Things people say to those of us with hEDS… and why they hurt.” 💬💜 “But you don’t look sick.” “I wish I were that flexible.” “Have you tried yoga?” “You’re too young for that.” None of these are helpful. 😔 All of them are exhausting. 🫠 Hypermobile Ehlers-Danlos Syndrome isn’t a party trick. It’s daily joint instability, pain, fatigue, and constant self-monitoring — even on the days we look “fine.” 🦴⚡ We don’t need fixing. We need listening, patience, and understanding. 🤍 If you live with hEDS and have heard these before — you’re not alone. 💜 If you don’t — please believe us when we speak. 🙏 💾 Save • 🔁 Share • 📣 Educate #hEDS #InvisibleIllness #ChronicPain #DisabledNotLazy #SpoonieLife
#Hyperresilient Reel by @dazzlewithheds (verified account) - Before diagnosis, I thought I was just clumsy… always spraining things, always tired, always wondering why my body felt different. After learning abo
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@dazzlewithheds
Before diagnosis, I thought I was just clumsy… always spraining things, always tired, always wondering why my body felt different. After learning about Hypermobile Ehlers-Danlos Syndrome, things started to make sense. Understanding my body hasn’t fixed everything, but it’s helped me be kinder to myself, learn how to protect my joints, and find a community that gets it. 💙🦓 Awareness matters because so many people are still searching for answers. #EhlersDanlosSyndrome #HypermobileEDS #ZebraStrong #ChronicIllnessAwareness #InvisibleDisability 🦓💙
#Hyperresilient Reel by @hyperresilient - These are a few of the dumb things that have been said to me (or my family) while managing hypermobile Ehlers-Danlos syndrome (hEDS), postural orthost
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@hyperresilient
These are a few of the dumb things that have been said to me (or my family) while managing hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS) ❤️‍🩹🙃 I know this happens to so many of us. What are some of the things you’ve been told? ❤️‍🩹 Medical Advice Disclaimer: This information is educational and is not intended to be a substitute for personalized medical advice. Always consult with your healthcare provider. Follow @Hyperresilient for clear, research-based posts on hEDS, HSD, POTS, MCAS, ADHD, and autism. #hEDS #POTS #MCAS #InvisibleIllness #KeepTheFaith #Hyperresilient
#Hyperresilient Reel by @chronicplannerstudio - So this is not normal right? This keeps happening to me where I realize positions that I've sat in my whole life that I thought were normal are not a
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@chronicplannerstudio
So this is not normal right? This keeps happening to me where I realize positions that I’ve sat in my whole life that I thought were normal are not actually normal. Give me your thoughts! 🤍 . . . #eds #hypermobile #chronicillness #invisibleillness #hsd
#Hyperresilient Reel by @dazzlewithheds (verified account) - Early diagnosis of hypermobile Ehlers-Danlos syndrome isn't about being given a label - it's about being believed 🫶, protected 🦴, and supported soon
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@dazzlewithheds
Early diagnosis of hypermobile Ehlers-Danlos syndrome isn’t about being given a label — it’s about being believed 🫶, protected 🦴, and supported sooner 🤍. Early answers can mean fewer injuries, better care 🩺, and a life with more stability and self-trust 🌱. If this resonates with you, you’re not alone 💜 #EhlersDanlosSyndrome #hEDS #EarlyDiagnosisMatters #ChronicIllnessAwareness #DisabilityAdvocacy
#Hyperresilient Reel by @dazzlewithheds (verified account) - Living with hEDS means your body does things most people don't even realise are possible. One minute you're the "flexible one," the next you're explai
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@dazzlewithheds
Living with hEDS means your body does things most people don’t even realise are possible. One minute you’re the “flexible one,” the next you’re explaining why that same flexibility actually hurts. From sitting in strange positions to joints that pop like bubble wrap, some things only people with hEDS truly get. If you know… you know. 🦓🦴 You’re not alone in the weird joint club. 💫 #hEDS #EhlersDanlosSyndrome #ChronicIllnessLife #ZebraStrong #InvisibleIllness
#Hyperresilient Reel by @meag0916 (verified account) - Going through this new diagnosis has been such an eye-opener and such a breath of fresh air. It has allowed me to realize that what I am going through
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@meag0916
Going through this new diagnosis has been such an eye-opener and such a breath of fresh air. It has allowed me to realize that what I am going through is not fake. I am not making it up and that I truly feel all the symptoms that I have for all these years. I have doubted myself. I have wondered if I was over exaggerating or if it was all just in my mind and that I needed to just simply snap out of it, but it was none of that. It was truly EDS hyper mobility and it is in fact a real diagnosis here is to the future and conquering all the things that I thought I would never be able to I am stronger than I thought. I am stronger than they believed. I am a child of God. #eds #hypermobility #chronicillness #awareness #iamstrongerthanithink
#Hyperresilient Reel by @loveandlightwellnessvt - The diagnostic process for hEDS is broken - not your body. 🙇🏼‍♀️🫶🏻 This condition doesn't show up on standard labs, which is why so many people a
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@loveandlightwellnessvt
The diagnostic process for hEDS is broken — not your body. 🙇🏼‍♀️🫶🏻 This condition doesn’t show up on standard labs, which is why so many people are dismissed, misdiagnosed, or told it’s anxiety. 👩🏼‍⚕️❌ Education matters. Pattern recognition matters. Lived experience matters. If this resonates, you’re not alone — and you deserve informed care. 💛 As a nationally board certified health and wellness coach, I help people navigate their hEDS diagnosis everday. Let me help! Comment “diagnosis” for a free consultation!! 🙂‍↕️ Website and email are in my bio - let’s do this. ⭐️ #chronicillness #hypermobileehlersdanlossyndrome #mcas #pots #fyp
#Hyperresilient Reel by @beth_and_coop (verified account) - After 33 years, I finally have a name for something I've lived with my whole life. On March 5th, I was diagnosed with Hypermobile Ehlers-Danlos Syndr
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@beth_and_coop
After 33 years, I finally have a name for something I’ve lived with my whole life. On March 5th, I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS). There have been decades of unexplained symptoms - bruising, joint issues, circulation problems, reactive skin, tendon/ligament instability, hypermobility, slow healing time, easy scarring. It was always written off because tests came back “normal.” But what do all of these ongoing issues have in common? A connective tissue system that doesn’t function the way it should, which is the root of hEDS. I’m still learning. I’m still processing. I’m still navigating appointments. In the meantime, I started a small dose of GLP-1 in August and it’s been a game changer in regards to my circulation and inflammation. Honestly, I feel at ease. A true diagnosis is a relief more than anything. #heds #eds #hypermobileehlersdanlossyndrome #ehlersdanlossyndrome
#Hyperresilient Reel by @dra_says (verified account) - If you have hEDS, you're much more likely to have ADHD. Multiple studies show ADHD is significantly over-represented in people with hypermobile Ehler
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@dra_says
If you have hEDS, you’re much more likely to have ADHD. Multiple studies show ADHD is significantly over-represented in people with hypermobile Ehlers-Danlos syndrome and generalized joint hypermobility — far higher than in the general population. Why? hEDS is a neurodevelopmental connective tissue condition. Collagen isn’t just in joints — it’s in the brain, blood vessels, and nervous system scaffolding. Shared mechanisms include: • altered brain connectivity and neurodevelopment • autonomic nervous system dysfunction • sensory processing differences • genetic overlap affecting connective tissue and neurodivergence This means the same biology that makes joints hypermobile may also shape how the brain develops, processes attention, emotion, and sensory input. So ADHD in hEDS isn’t random. It’s part of a shared neurobiological profile. That’s why so many people with hEDS say: “I was diagnosed with ADHD first — then everything else finally made sense.”
#Hyperresilient Reel by @amaleighconstance - ✅corrects most people with HEDS are not disabled. Many of us still are. Those of us suffering from the trifecta since COVID, or if you're like me and
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@amaleighconstance
✅corrects most people with HEDS are not disabled. Many of us still are. Those of us suffering from the trifecta since COVID, or if you’re like me and had your first symptoms of POTS MCAS after the swineflu in 2012, are disabled. Those of us with a 9/9 out of the Beighton score are suffering. Those like me who were diagnosed late never knowing what was wrong, probably damaged their body beyond repair. Of course me and my mom are on the rare side of hEDS but our pain still matters. It is life altering to be paralyzed after failed spine surgery over and over and over again like my mom. I feel these creators compare HSD to their classical and vascular EDS more than hEDS. Surgical complications are just as common with hEDS as they are with vascular and classical EDS. Weird scars and random bruises is a staple of EDS. That’s how they know you have EDS and not HSD. #heds #dysautonomia #ehlersdanlosawareness #ehlersdanlossociety
#Hyperresilient Reel by @ehlersdanlosboy (verified account) - Do you ever feel like the rarer types of EDS get overlooked in conversations about Ehlers-Danlos Syndrome? This isn't about comparing pain or dismiss
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@ehlersdanlosboy
Do you ever feel like the rarer types of EDS get overlooked in conversations about Ehlers-Danlos Syndrome? This isn’t about comparing pain or dismissing anyone’s experiences—every type of EDS is real and valid. But sometimes awareness, research, and discussions seem to focus on only a few types. If you live with EDS, especially a rarer type, I’d really like to hear your perspective. Do you feel seen and supported? Or do you feel like your subtype is often left out of the conversation? Let’s talk. 👇 #EhlersDanlosSyndrome #EDS #RareDisease #RareDiseaseAwareness #ChronicIllness

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