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19 Things People Don't Realize You're Doing Because of Ehlers-Danlos Syndrome

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Article updated August 1, 2019.

Few people besides those with Ehlers-Danlos syndrome realize how the condition can affect so many aspects of life. When people see you out shopping or at work, they may not realize you’re adjusting your body to prevent a dislocation or that you don’t eat certain foods because they’re difficult to digest.

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

We asked our Mighty readers with EDS to share the things they do that others don’t realize is because they have EDS. Living with EDS requires constantly working to prevent and manage pain and energy loss, and friends and family may not see everything you do just to get through a day.

Here’s what the community said:

1. “Cracking my joints. Most people think I am cracking them just because, but I am actually putting things back where they belong because the fully or partially dislocate.”

2. “I know a lot about different medical problems and people think it’s amazing and awesome that I know so much. But in reality the only reason I know so much is because I do so much research on EDS and its connected conditions. I don’t get a lot of help from doctors so I research myself.”

3. “Switching positions every few minutes, even when I’m sleeping. I know if I stay still without being aware of how I’m seating or standing there is a good chance I might dislocate a joint.”

4. “People don’t realize that because I have Ehlers-Danlos syndrome, I count steps because if I have a joint dislocate, I need to know how far it is for me to get back to a safe place. I can’t afford the pain caused by not being able to recover from a dislocation.”

5. “Standing with my knees bent. If I’m not careful, I hyperextend them and then I can’t walk for a day or two. Just being hyperaware of my posture in general. Hips, shoulders, feet… everything has to be as supported as I can manage. It is exhausting.”

6. “Walk slower or stay in a store longer because I don’t want to move and hurt more. I also sit on the couch a lot and just tell people I’m too tired to hang out when I’m really I a lot of pain and I don’t want to move.”

7. “Suddenly talking louder or stopping mid-sentence as I wait for the muscle pain or pain from a subluxation to stop — then stretching, maybe taking medication, and moving on in conversation as if nothing had happened.”

8. “I hate yawning. I have to consciously stop myself mid-yawn so my jaw doesn’t dislocate.”

9. “Because of Ehlers-Danlos syndrome I am very ‘clumsy’… That is my legacy… but people do not understand that my properioception is off, so I trip over flat objects, run into walls, poles, people etc.”

10. “I move constantly because sitting still hurts. People get so frustrated and ask me to sit still. I don’t even realize that I’m doing it. I’ve even been told by an elderly lady that I wasn’t possibly paying attention while fidgeting like that. Little do they all know that if I sit still for to long, my joints start to slip out of place, and the pain is unbearable.”

11. “Keeping disinfectant and Band Aids close by all summer because even my most comfortable shoes will eventually rub skin off. Not blisters, just straight to taking it off.”

12. “I have very long hypermobile toes. As a kid I was always last kid picked in gym class. But then one day I discovered I could use my toes like monkey toes to climb that big rope. I could climb straight to the top, let both hands go and wave at everyone, holding on with my long toes wrapped around that thick rope. Everyone thought it was so cool.”

13. “Using a hands-free leash for my service dog. A lot of people assume it’s because I don’t want to hold a leash all day (which is true, your fingers cramp), but if he stops to itch or something and I don’t realize it immediately, my fingers could dislocate if the leash pulls them the wrong way.”

14. “I wear Doc Marten boots almost exclusively not just for style. They provide plenty of room for orthotics and can be tied tightly around my ankles to prevent accidental rolling or hyperextention.”

15. “I won’t drink ice cold drinks. Most people think it’s just a weird thing, but in reality it’s because EDS has caused me to have dysmotility of the entire digestive tract and if I try to drink something very cold my esophagus spasms and I throw up, so it’s just easier to let them think I’m ‘weird’ than to explain.”

16. “Wearing short sleeves in the winter or long sleeves in the summer due to temperature disregulation.”

17. “I wear a corset, not for ‘waist training’ but for back support.”

18. “I make all my food from scratch since pre-prepared food usually has chemicals and allergens which irritate my stomach. I’ve also started making my own health/beauty products.”

19. “I carry a giant purse or backpack style bag. It’s not just my personal style – it’s so I can carry all of the medications and medical supplies I might need quick access to!”

What things do you do that people don’t realize is because of your Ehlers-Danlos syndrome? Share in the comments.

Originally published: January 12, 2017
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