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20 Photos People With Ehlers-Danlos Syndrome Want to Post on Facebook, but Don't

When you live with a chronic illness like Ehlers-Danlos syndrome (EDS), you may find yourself constantly debating whether or not to share photos and updates about your condition on social media. Some of your online friends may be supportive, but others may respond with hurtful judgments or accusations – especially if your illness is “invisible.” Although Ehlers-Danlos may sometimes be visible in hyperextended joints or excessive bruising, it is still difficult for others to fully understand what life with EDS is like unless they’ve experienced it themselves.

While posting about your life with Ehlers-Danlos syndrome can help raise awareness of the condition, it can still be scary to be vulnerable about your health battles online. To better understand the reality of what it’s like to have EDS, we asked our Mighty community to share photos of that they wanted to post on Facebook, but didn’t. If you’re reading this because you have a friend with EDS, reach out and let them know they have your support when they post on social media.

Here’s what the community shared with us:

1. “I wanted to post this but I had recently had foot surgery and I’m really self-conscious about the big purple scars. I had bunions removed on both sides of my feet and equinus correction so this picture shows that.”

woman posing next to pool with scars on her feet

2. “This is at a hospital. I was in a lot of pain but I was smiling. It’s always been hard for me to put my sadness on display, so even when I feel like I can’t handle it anymore, I smile. Never posted this picture because when people say, ‘But you don’t look sick, you seem happy,’ it still hurts. It took this (sharing a photo I wanted to post, but didn’t) to make me see it’s OK to show it and to bring awareness to invisible illnesses!”

woman lying in hospital bed

3. “Having to go through all my pictures ensuring I don’t look weird or strange. I never know how to position myself, so I rarely have any pictures.”

several photos of a woman posing

4. “I wanted to post this but didn’t know what to say. This was during a time [when] the hospital was insisting my x-ray was clear and nothing was wrong. After months and an ultrasound led to surgery, bony growths, twisted collar bone as well as trapped tendons and nerves were found.”

woman's back

5. “I have a few different ones! Like this one, which shows how far backwards my knee bent when it got stuck. Mostly I don’t share them on Facebook because they can creep people out, and I’m not after sympathy. I’d rather my friends and family understand if I have to bail on something than have pity for me.”

a woman's knee hyperextended

6. “I had managed to graduate after seven and a half years of study for my undergrad. During that time I had battled PTSD, anorexia and depression which required multiple breaks for treatment, and was dealing with undiagnosed EDS and POTS which caused horrific issues that all impacted my studies. Shortly after my studies ended, I encountered a bout of optic neuritis which required very high dose steroids – these made my body change out of recognition. At the time this was taken, I was virtually housebound. My EDS was worse then ever. I didn’t post this because after such a battle to get my degree, through all I had coped with, this felt like a real kick.”

woman standing by a river in her graduation cap and gown

7. “I don’t want people to pity me, but this is my reality. I have to sleep in multiple braces to make sure I don’t wake up with anything dislocated or torn. But I also don’t want [people] to see me this way and then ask why I take it off during the day and say I’m faking it.”

woman wearing braces and slings to sleep

8. “Autonomic testing. I didn’t post it because I don’t want people to think I am attention-seeking.”

woman lying in a hospital bed to do autonomic testing

9. “The amount of medications it takes for me to feel somewhat normal. Most people have no clue just how much stuff I have to take to feel like a functioning adult.”

drawer of medications and pill bottles

10. “In November 2016 I had spinal surgery to repair two fractures caused by hypermobility. I asked my husband to take pictures throughout for my blog but never published this one as it felt too raw. I have just come back from about five hours of surgery and about 30 minutes before this picture was taken I stopped breathing in the recovery area.”

woman lying in hospital bed asleep

11. “In this picture I am on vacation and had just gotten out of a hot tub so my POTS was triggered. You can see the significant blood pooling and how pale the top part of me is. Invisible illness that isn’t so invisible here! I also find this picture generally a bit embarrassing because it doesn’t feel like it looks like me from just a few years ago. Before EDS hit me hard, I was in good shape and much more muscular. Other aspects of how EDS have influenced my life can be seen from my short hair (I don’t have the energy and strength to care for longer hair) and unshaven legs (I injure myself every time I try to shave).”

woman standing outside on a deck in her bathing suit

12. “I love this picture. And I love my cat. It’s so rare it comes and kisses me like this. I can’t remember the last time it did. I was so happy and I needed it so badly. But I couldn’t post it on FB because of what was in my nose.”

woman lying in bed cuddling with her cat with an oxygen tube in her nose

13. “My elbows overextend a bit and others find it creepy, but that’s EDS for ya!”

woman with a hyperextended elbow

14. “Sort of hard to tell, but this is me folded in half with my head resting on my feet. I don’t post things like this because I’ve been having to do these sorts of party tricks for people my whole life and am kind of over it. I take photos like this for doctors so I don’t have to keep performing for them.”

woman folding her body in half

15. “I am considered a upbeat positive person. I always have a smile on my face – but in this picture I don’t. They say a picture paints a thousand words… You can see my EDS through my flexibility, my tubing running along the floor, but also my ability to love life. Below, however, tells a story of my traumatic PEG-J placement, requiring emergency CTs to check for perforation, IV antibiotics to treat my peritonitis and sub-cut morphine around the clock to reduce my pain. That picture could easily have been the last photo of me. So why don’t I share this picture? Because it’s heartbreaking for my family and friends to see me in a different light. I haven’t got that smile painted on my face.”

collage of photos of woman doing a backbend and lying in the hospital after surgery

16. “I was in horrible pain and could hardly walk, and I was trying to take my kids to get a couple of dollar store toys. My daughter, who is awaiting her genetic testing, wouldn’t let me put her down; I could just see by her face she was miserable. So, there we were, just sitting on the floor of the store because it was the best we could do.”

woman sitting on the floor of a store with her daughter

17. “Makes people sick. Posted it once so people could understand why I needed a wheelchair so bad. Got ‘yuck’ comments.”

woman's foot bent at an odd angle

18. “No one ever sees this side of me, when the pain becomes too much and you wish you could be anyone but yourself! Yet you put your invisible illness mask on, smile and get on with your life. Numerous times I’ve wanted to show people this side of me but [was] just too scared of judgment and sympathy.”

woman sitting on the couch wiping her eyes

19. “I wanted to post this so bad. I had done my makeup, my hair was behaving and I was having a great time at my friend’s wedding. But that nasty scar from my armpit to the top of my shoulder was after a major reconstruction after my shoulder kept dislocating until it tore my labral. I like to keep things light about my scar and say it’s a good conversation piece, but I’m really self-conscious about it. But this picture just made me feel so good about myself.”

selfie of woman with a scar on her shoulder from surgery

20. “EDS has caused me to develop POTS and inappropriate sinus tachycardia. This was a bad day. My seated heart rate was over 130 bpm. I took this while I was trapped on the floor with my legs propped up on the arm of the couch. I was too weak and dizzy to get myself up and my husband was gone. My only choice was to wait it out. Lyla, my pit/American Bulldog mix knew something was up and stayed with me. I took it because I wanted to show how compassionate the breed is. I didn’t post it because I was afraid I would hear more of the ‘but you never look sick’ bull that [people] sling at [those] with an invisible illness.”

woman lying on the floor with her dog

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