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

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When you scroll through Facebook, you tend to see your friends’ “highlight reel” — the best, most exciting aspects of their lives they wanted to share. Unfortunately, when you’re dealing with a difficult health situation like Ehlers-Danlos syndrome, this can make it difficult for you to share what’s really happening in your life. You might wonder if people will think your post is too negative, or not really understand how deeply your health challenges affect your everyday life.

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

Everyone should feel able to share the reality of their lives without judgment. If nothing else, it can show others going through similar challenges that they aren’t alone and spread awareness of EDS. So we asked our Mighty EDS community to share something they wanted to post on Facebook, but didn’t. Perhaps by sharing these posts now, we can help others begin to understand EDS a little better, and encourage them to show more compassion towards their “zebra” friends.

Here’s what our community told us:

1. “I wanted to share a post that talked about daily things people with EDS deal with. I wanted to share to let people know that I really am in pain, and that it’s a daily struggle. But I didn’t, because so much of my family thinks I’m a hypochondriac and that I do it for attention.” — Sierra W.

2. “TMI stuff about the gross symptoms and co-morbidities, which no one wants to hear but they make my life hell, especially since they’re what I’ve dealt with the longest besides my joint issues. Things like ‘oh, my hiatal hernia is acting up so I just puked everywhere.’ Or ‘guess I have another ulcer because I am straight up sh*tting blood…’ And also, ‘ah, POTS, almost forgot I had you until I passed out on the kitchen floor. But I found a mummified Cheeto under my stove!’” — Ray E.

3. “I wanted to share pictures of all the blood I lost when I had a vaginal rupture and a bowel tear from EDS but due to the graphic nature I didn’t post it. I feel like if I had people may have finally understood what my body goes through every day of my life and people would quit downsizing the severity but I refrained from the post.” — Jamie H.

4. “I wanted to post this morning about how sick I am of having alternative medicine, diets and sometimes very dangerous suggestions pushed on me. I hate going to the doctor, so no matter what someone suggests, I’ve probably considered it or tried it. Some of the suggestions boil down to, basically, ‘Have you tried not being sick?’” — Sara M.

5. “Just because I told you about EDS after getting diagnosed, doesn’t mean I haven’t been miserable for years (since high school). This isn’t new for me. I just know why now. Why boat rides, hikes and exercising have always been so painful. Why everyone’s always thought I was moody or just lazy. I’m always in pain, and I’m always doing my best to hide it.” — Karrie A.

6.I have wanted to say, so many times, that I am not getting better. Maybe God will bring a miracle, but most likely He won’t. And that’s OK! Through my strength and journey I have been able to give others hope and strength as well! I may never ‘get better,’ but that doesn’t mean my life will be bad. So basically, don’t feel bad that I’m not getting better, but please don’t keep saying, ‘get well soon’ or ‘when will you get better.’ I hate lying to you to make you feel better.” — Catherine M.

7. “I would post an apology to my family, all the friends and could-have-been friends for canceling plans or not messaging back because I literally cannot get out of bed, for slowing down everything because I am afraid of dislocating something or hurting myself.” — Jenifer W.

8.I’m terrified. EDS symptoms tend to get worse and progress with age. I’m only 22 and have lost so much from my conditions already. I tend to downplay my symptoms and put a positive spin on things for the benefit of others. In reality, I’m miserable. And that truth is so hard for others to handle.” — Mahala H.

9. “After I did my tax return for last year, I couldn’t believe how much money I had spent on just trying to be well enough to get on with my life. Doctor visits, prescriptions, alternative therapies and physiotherapy added up to a colossal amount, and I’m still sick. Not to mention a special and expensive diet. That’s what it takes for me to function. I want to give a presentation about it to everyone in my life to be honest.” — Amy O.

10. “Being in pain constantly and the struggles I face from waking to going to bed. Weather it be subluxation, to fainting, sweating, being sick or cramps. It’s an ongoing battle and I feel like I’d just look as if I’m complaining if I posted everything that bothered me. Instead I hide it with humor and try to keep my page posts light hearted and positive. I turn to support pages for my real woes as I know they can relate and understand me.” — Pandora P.

11. “No matter what I am always in pain. I might be laughing or smiling but I’m still in pain. I’m not going to get better. It’s not that simple.” — Marissa H.

12. “People with EDS need to stop competing against one another about who has the most severe presentation… Don’t compare struggles.” — Hailey R.

13. “I just want to express I’m in pain without feeling like people are getting sick of me.” — Emmett D.

14. “Being told that I’m faking my illness and them not believing me even when they’ve seen it hurts more than they can imagine. I’ve already lost my hobbies, career options and my ex-fiance; losing my small amount of friends makes it worse.” — Unity M.

15. “How much bitterness and sadness and rage and embarrassment and shame and guilt and grief and fear about losing control over my body and in turn my life has affected me and my sense of self. I’m actually more comfortable talking about the physical aspect of this than I am the mental and emotional toll of living with it at this point.” — Brittney G.

16. “It’s hard to make those around you understand EDS and even though you have become a master at summing it up, the people you talk to seem to never understand. Healthy people need to stop gaslighting us for trying to be normal and just being sick in general. If I see someone in the store they instantly think I’m cured even if I’ve explained it before to them. I get stuff like that where I live all the time and it still hurts.” — Angel H.

17. “I would talk about how chronic pain changes everything in your life. People don’t seem to get it.” — Ali D.

18. “I hate when people assume that I’m doing better because I’m up and doing ‘normal things.’ Nope. Still sick. Still miserable. Still in pain. Questions/statements I hate: ‘Are you using less pain meds since you seem to be doing better?’ ‘You look like you’re doing better!’ ‘Oh, you’re doing ____. That must mean you’re better.’ Thanks for thinking of me and trying to ask how I am doing, but there’s a right and a wrong way. Chronic illness means chronic. Every day, always. Yes, I might have better days than others, but please don’t assume my health and well-being.” — Cara S.

19. “Why does it hurt when it shouldn’t? No dislocations, no subluxations, just wake up and hurt. And I slept for a solid 12 hours and got exhausted going to pee and had to lay back down. WTF?” — Jacklynn C.

Originally published: February 3, 2018
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