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30 'Code Words' You'll Only Understand If You Have Ehlers-Danlos Syndrome

When you have Ehlers-Danlos syndrome, finding others who understand what you are going through can be like a breath of fresh air. Since EDS can cause so many symptoms, when you find others who can relate it can remind you that you are not alone, and are part of a warrior community.

Being part of a community not only comes with support, but perhaps also with its own secret language, or “code words.” Sometimes when you’re flaring it can be too tiresome to fully explain what is happening, so having these “code words” can help to let others know what is wrong so you don’t have to. For example, I say “I’m crashing” when I feel a flare coming.

These “code words” can vary from illness to illness, so we asked our Mighty community for something they say that is “code” for something else that only EDS warriors will understand. Having others who truly understand what you’re going through can be an important aspect of living with EDS – and these secret “codes” that only zebras get can make the sense of community feel even stronger.

Here is what our community shared with us:

  1. Zebras: because the medical professionals are trained that if you hear hooves, think horse and not zebra; we are the zebras in the medical world who often get overlooked.” – Misti M.
  2. Comfortable‘ = not causing severe pain.” – Cheryl H.
  3. I’m fine…‘ Everyone knows fine isn’t fine.” – Angela T.
  4. Spoons needed‘/’Not enough spoons today‘… Other people who follow the spoon theory understand entirely. A spoon is representative of how much energy (physical, mental, emotional, social) something is going to take. A shower might be two spoons. But if you only have 12 spoons a day, and you already have 11 spoons needed for essential tasks, you can’t afford to shower.” – Erika D.
  5. “’I’m just tired‘ a.k.a. ‘I’m so drained I am now dissociating from reality.’” – Ashley V.
  6. My joints go out more than I do…” – Darcey R.
  7. “’Dressing for battle‘… putting on braces, KT tape, insoles, splints etc…” – Deborah J.
  8. “’So, I did a thing‘ – usually referring to twisting in some weird way other non-hypermobile people can’t do.” – Sarah A.
  9. “’Zebra down‘ basically means I’m going to need to be in bed or on the couch the rest of the day. My immediate family and my husband know exactly what it means when I say it. Most people wouldn’t know if they aren’t one.” – Laura P.
  10. “’Party tricks,’ referring to the weird things we can do that make our joints worse over time.” – Wilder M.
  11. “’My head is going to fall off.’ – those EDSers with [craniocervical] instability.” – Louise M.
  12. “’Oh f___, the weather is going to change.’ i.e. The pain is for effing real.” – Karla D.
  13. “‘My *any joint* has gone on strike.‘ Honestly I feel like a lot of regular talk about EDS is ‘code’ because people are so unaware. When I tell them I have subluxations daily they look at me like I just started speaking a language they have never heard.” – Antonia D.
  14. “When brain fog starts to take over – ‘I’m a zombie.’” – Dawn H.
  15. “’Hey, I’m stuck‘ – my joints did a thing and I can’t get them to Ctrl-Z. I need some assistance. Or I’m stuck in a physical sense, but in a way normal humans can’t do (e.g. squeezing into a hiding spot by letting joints slip over each other, but now unable to unslip them).” – Alecia R.
  16. “Three words. Snap. Crackle. Pop.” – Taylor H.
  17. “’Wonder how I did that?‘ = Oh, I’m bleeding, I guess my skin tore.” – Jerritt D.
  18. “When I get another ‘weird’ injury, or have high pain levels, I say, ‘My stripes are showing today.’” – Brittany N.
  19. “’I just popped my *insert joint here*.‘ Saying I subluxated or dislocated either wouldn’t be believed or sounds scary dramatic. When I say oh I have just popped my shoulder fellow EDS sufferers and those very close to me know what I really mean. Everybody else thinks it’s just like cracking knuckles.” – Laura B.
  20. “’My battery is low‘ and looking at my phone was a key phrase to a few of key friends or parents that I was tired, in pain and it was time for me to go.” – Rachel F.
  21. “Referring to myself as a Tinkertoy.” – LaurieAnn Y.
  22. Gentle hugs, hugging while trying not to hurt anyone.” – Eve W.
  23. Hot wheels – I need my wheelchair.” – Jenarae G.
  24. “Saying it’s a day for ‘the mask‘ when I have something important to do that can’t be rescheduled but it’s a bad pain day – pop on my ‘I’m fine’ mask and fake smile my way through the day until I get home and can fall apart again.” – Erryn K.
  25. “’My body is punishing me‘ a.k.a. something I did is causing a flare.” – Amanda U.
  26. “’My bones hurt.‘ There’s not really another way to describe that one.” – Rebekah C.
  27. “’There’s a storm coming.‘ We know this and say it as a means to acknowledge and communicate that our bodies, head to toe, are in serious distress, usually in the form of bones aching, deep tissue pain, joints subluxing/dislocating and our skin feeling like a gigantic bruise. If we’re really ‘lucky,’ multiple joints dislocate at once. Usually we try to cover up with blankets to keep warm (it’s the cold, pressure and humidity that really does it), but sometimes that doesn’t help because the weight of the blanket on our skin is too much.” – Mikki I.
  28. Dazzle: means a group of zebras, which we all refer to ourselves as.” – Melissa A.
  29. Is this a ‘me’ sickness or a ‘normal people’ sickness?” – Megan M.
  30. “’Zister‘ [means] fellow EDS sister. ‘Sending spoons‘ [means] sending strength.” – Nikita E.

Being part of a chronic illness community often means you have your own unique language to describe your experiences. If you have EDS, you may have used some of these code words and phrases before. If there are any other code words you use, let us know in the comments!