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26 Metaphors That Describe What Ehlers-Danlos Syndrome Feels Like

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Trying to fully understand what it’s like to live with a chronic illness like Ehlers-Danlos syndrome can be difficult. While others may never fully empathize with what it’s like to have EDS, it’s still important to raise awareness and improve understanding of the condition. Ehlers-Danlos syndrome, or EDS, is a connective tissue disease that is “generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility,” according to The Ehlers-Danlos Society.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Not only does EDS frequently cause extremely stretchy skin and hypermobile joints, but it can also cause an abundance of other symptoms and side effects as well. So when you have EDS, it can be extremely hard for others to fully understand what you are going through.

So, to help others better comprehend the condition, we asked our Mighty community to share metaphors that would help people understand what Ehlers-Danlos syndrome is really like. Hopefully these metaphors will shed some light on what life with EDS is like and bring about some awareness, and compassion, to those living with this chronic illness. By gaining a better understanding of what EDS is like, you’re not only helping to raise awareness about this disease, but also letting those living with EDS know they are supported and not alone.

Here is what our community shared with us:

  1. “It feels like a never ending game of whack-a-mole. New issues popping up all the time, frantically trying to squash them only to have more issues pop up. It’s exhausting and excruciating keeping everything together, even worse if you stop paying attention, even for a moment.” – Zanne B.
  2. “Imagine a lifetime of seeming to conquer an issue and your body slamming into a brick wall that sets you back weeks. EDS is never knowing what your body is capable of because the level of ability resets up or down every day.” – Denyl B.
  3. “It’s like your connective tissues are stretched out hair ties that don’t hold your hair up and eventually end up snapping. But in this case it’s your entire body.” – Christa R.
  4. “Imagine that you’re on fire. All the time. Imagine that you have glass in your feet. Imagine that you’re walking around like this all day but you have to be careful because, every now and then, your ankles will randomly slide out from under you. Imagine that your knees will randomly hyperextend. Imagine that you’re sitting in bed and suddenly you feel you’re being stabbed in the back, but someone is also trying to pry your shoulder blades up with a dull butter knife. Imagine that removing bandages feels like striking a cheese grater against your skin because your skin is being ripped off. Imagine trying to sleep and suddenly feeling like someone is rubbing gravel on your hips, back, shoulders and ankles. Imagine feeling like a large cow is sitting on your skin and it’s wearing spiky underwear (that’s just your shirt or blanket).” – Mikki I.
  5. “My ligaments and tissues [are] like the strength of a rubber band, while normal people have the strength of duct tape. You know rubber bands and how they snap sometimes when they get too stretched out? Yeah, my ligaments and tissues are those tissues and when they snap, the bones they’re holding don’t react too well.” – Saylor A.
  6. “EDS is sounding like you’re full of pop rocks. Was that a gunshot? A firecracker? No, it was my hip.” – Ashley O.
  7. “It’s like there’s angry little elves running around my body with knives and hammers and fire and just going wild like it’s a goddamn piñata. One will stab me in the hip and then another will punch me in the ribs and then one will light fire in my arm. That’s how it feels. All day. Every day. And there isn’t a damn thing I can do about it.” – Grace D.
  8. “My body is like the lower levels of a really intense game of Jenga.” – Carol P.
  9. “It’s like being a plane held together by glue, when all the other planes are held together by bolts. You’re still used to fly but you’re not made to, so you fall apart.” – Sean F.
  10. “Having hEDS is like being on the medieval torture rack 24/7 – your limbs are going every which way!” – Keaton B.
  11. “Imagine you are riding a bike, but the bike isn’t a very good one, the bolts start loosening and you’re riding along and things start wobbling but you can’t stop, you have to keep peddling as things shift around. The chain and gears haven’t been greased and are all sandy and start grinding away. The pedal falls off and the brake cable snaps as stiffness, permanent injury or comorbid conditions set in. Then your child starts riding beside you, and you know you’ve given her a faulty bike too!” – Louise M.
  12. “It’s like swimming in a pool with a full outfit on. You can tread water but you can never fully swim.” – Jordan W.
  13. “It’s like your whole body, including all your vital organs, has been put together with super cheap glue instead of the really tough glue that was used for everyone else.” – Lidia M.
  14. “Imagine your body’s structure is built like a building, strong metal structure holding you up and together. EDS means that instead of a metal structure, yours is cooked spaghetti. It’s held together but only just, and isn’t very stable.” – Cassie G.
  15. “Tidal wave of pain and symptoms.” – Billie P.
  16. “A delicate flower and its petals falling (our faulty collagen) instead of blooming (every other person’s connective tissue). Also, our bodies are like play-doh, they can look OK formed together, but they are really easy to break and fall down.” – Erin S.
  17. “I tell people this. Imagine that you have all of the ingredients you need to make a cake, but every time you try to make the cake, you end up with cookies. That’s what my body does, it doesn’t matter what supplements I give it, it has the right stuff to make collagen, but no matter what, my DNA will always make stretchy collagen. Of course, that’s way oversimplifying it, but it seems to get the idea across.” – Tammy B.
  18. “I feel like a broken marionette doll. It’s like someone else is jerking me out of place at every single movement and I’m trying my best to hold everything together.” – Tori T.
  19. “We’re like a sprained ankle; but of course our entire bodies, from hair to toe nail. Instead of icing, resting and keeping off of our sprained ankle, life continues to force us to jump up and down on it, roll it and doesn’t allow us to even know what the word ‘rest’ is…” – Desiree A.
  20. “Tendons are like an old pair of underwear. Elasticity just gives out.” – McKenzie S.
  21. “I always say it’s like trying to live a normal life while wearing ice skates. Like sure I can do most things non-EDS people can do but it takes extra.” – Kate H.
  22. “Like an old Barbie doll, reattaching the loose limbs after minor movements. When I first sit up from bed, my shoulder pops back, my back follows and snaps back into place. My feet hit the ground and pop. I stand and take the first step with my hand on the wall in case I fall. Everything is always ‘snap, crackle, pop.’” – Mitsi M.
  23. “An EDS body is like ice cream, looks good at first, but when overworked or left sitting out, it turns into a big heaping mess that you cannot quite ever fix or recover from.” – Sarah C.
  24. “Having Ehlers-Danlos feels like the day after a really hard workout… every single day.” – Jessica D.
  25. “Our tendons and ligaments are like slinkies instead of strong springs.” – Nicole M.
  26. “Like IKEA furniture without the screws.” – Céline R.

If you don’t have EDS, hopefully these metaphors can help you understand what this disease is like. And if you do have EDS, know that we see you, we understand you and want you to know you have support always.

Originally published: March 27, 2019
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