14 Things People With Ehlers-Danlos Syndrome Said That Were Code for 'I'm in Pain'

Chronic pain is a fact of life for many people with Ehlers-Danlos syndrome, but this isn’t often well-understood by others. Oftentimes people with EDS “look fine,” so you might get a confused look or questioning comments when you tell people you’re in pain. As a result, many in the EDS community have come up with creative ways to say they’re in pain. This might include different ways of describing pain so people without EDS understand what you mean. Or, it might be a phrase that helps deflect what you’re feeling if you’re not up to talking about it or just want to be polite.

We wanted to illuminate the different ways our EDS community talks about their pain, so hopefully loved ones can have a better sense of how they’re feeling and that even if they “look fine,” they may not actually be “fine.” So we asked our community to share some phrases they’ve used that were actually code for “I’m in pain.”

Here’s what our community shared with us:

1. “I’m tired.”

“”I’m tired’ normally due to how at face value it’s true due to pain just draining my energy as well.” — Bryce M.

“‘I’m so tired’ because it’s a noninvasive expression.” — Erin B.

“People don’t understand pain when you look OK. It’s easier to just say you’re tired.” — Alexandra B.

2. “I can’t do that right now.”

“‘I can’t right now’: people think I’m lazy or flaky because of it. But I have to cancel all the time, and I feel bad because of it.” — Sierra W.

“‘I am sorry, not today. Can we schedule this for another day?'” — Hannah K.

3. “I’m not doing well.”

“Tell my hubby ‘I’m not doing too well’ and he knows it’s time to go home, time for him to hold my arm.” — Louise M.

4. “I’m alive.”

I always hear ‘pain lets you know you are alive’ so when it gets bad I tend to say ‘I feel so alive right now.'” — Rebecca N.

“‘Whenever anyone asks me how I am I say ‘I’m alive.'” — Sarah B.

5. “I’m done.”

“When I have really pushed through as much pain as I can tolerate, I simply say, ‘I’m done’ followed by a ‘No joke’… It’s usually to my husband or grown kids who know I am always hurting but have reached my max.” — Rita F.

6. “I’m fine.”

“‘Oh, I’m doing all right’ with a somewhat forced, but very convincing, heavily practiced charm.” — Saylor A.

“I tell people that I’m living the dream. They laugh and then usually don’t press about how I’m actually feeling.” — Marissa H.

7. Nothing

“I don’t say anything; I stand on one leg like a flamingo and gaze off into the distance…” — Erica W.

“My daughter just laughs. It is this monotone laugh. That is how we know she is faking her ‘I’m OK.'” — Angel F.

“I lean on the edges of my feet or on the counter at work. My coworkers tell me to sit and rest.” — Lindsey B.

8. “I need to go home now.”

“‘We need to head back to let the dog out.’ [Or] ‘I’m fine’ with a smile filled with pain that only my partner recognizes. He then comes up with a reason to shoot off.” — Gemma B.

“‘I have some things to get done at home so I’ll need to go soon.'” — Abbey R.

9. “I’ve been better.”

“I’m not too bad today, been a little better but not too bad.” — Zoe H.

“Either ‘I’m not feeling the best’ or ‘I’ve had better days.'” — Jennifer W.

10. “I just need to sit for a minute.”

“I don’t feel well, or I’m tired or I need to sit down (usually to my boyfriend of 10 years, he knows I’m always in pain but he also knows when I’m at my limit).” — Jill S.

11. A metaphor

“Cinderella is my favorite Disney princess so I often tell family and friends I’m out with that I’m ‘turning into a pumpkin’ when my pain is getting bad, my fatigue is getting bad or I just need to go home.” — Ryleigh C.

“I use different forms of potatoes to let my family and friends know on any given day. Like on bad pain day I’m a potato that should only be used for mashed potatoes because it’s gone soft. On a normal day I’m just a a raw potato. A good day is referred to as a french fry.” — Unity M.

12. “I’m a little sore.”

Submitted by Ashley H.

13. “I’m shaky.”

“If I’m walking with my partner and not feeling good I’ll often tell him that I need to hold onto him and I’m shaky.” — Nicole I.

“From my 5 and 7-year-olds: ‘I’m sleepy, it’s hard for me to walk, my body feels shaky, my arms/legs just need to take a break, or I can’t eat.'” — Kristen H.

14. “Oh, it’s just that joint thing.”

Submitted by Sarah B.


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