15 'Embarrassing' Symptoms of Ehlers-Danlos Syndrome We Don't Talk About
Article updated August 1, 2019.
Though Ehlers-Danlos syndrome is commonly known for causing joint dislocations, anyone with EDS knows the symptoms go much further than that. Since EDS is a connective tissue disorder and connective tissue is found throughout the body, you might experience a range of symptoms affecting your skin, gastrointestinal system, energy levels, temperature regulation and more. And if we’re being honest, a few of these symptoms can be a little embarrassing, or cause embarrassing things to happen to you. The fact that EDS is often invisible, and not well-understood by others, can make these symptoms even more challenging.
No one should ever have to feel embarrassed about their body, and it’s completely OK to not be embarrassed about your symptoms. But it’s also totally normal to feel that pang of embarrassment from time to time. Hopefully by talking more about these symptoms, we can start to break down those stigmas, and at the very least, help other EDS warriors know they’re not alone.
So we asked our Mighty community to share “embarrassing” symptoms of EDS we don’t talk about. Your body is nothing to be ashamed of, but if you can relate to these symptoms, know you’ve got a community behind you who understands what you’re going through.
Here’s what our community shared with us:
1. Brain Fog
“The brain fog caused by the constant over-caution to not sublex anything.” — Marissa H.
“Brain fog. I’ve always spaced out at the most inconvenient moments and used to be made to feel like I was incompetent until I realized it’s common with those that have EDS.” — Jackie L.
“Being forgetful but teachers just thinking that you’re slacking and choosing not to do the work.” — Molly M.
2. Fainting/Passing Out
“For me it’s not so much the EDS, but more of a secondary condition. POTS! Passing out in the middle of talking with someone. And it just so happened yesterday. Thankfully my husband was there.” — Melissa R.
“Passing out probably. My family tries to keep at least one person on me at all times. Even my toddler niece knows to tell strangers ‘she does this a lot’ if I’m unconscious on the ground. And did so when I was chasing her through a store last Christmas before the rest of the family found us. I always feel like running away right after.” — Kara R.
“Passed out during musical worship at church and fell out of my chair, onto a hard concrete floor, popped my hip and shoulder out and had to call an ambulance because I couldn’t move without passing out. Super awkward coming to and seeing half a church looking at me confused!” — Catherine M.
“I think the most embarrassing thing I deal with are prolapses. I suffer from chronic and repeated pelvic organ and rectal prolapses. They are very painful and sometimes require emergency medical help for the pain and to fix the prolapses. We are having to consider surgery because of it. I’ve learned to not be embarrassed about it though. It’s nothing to be ashamed of.” — Willow A.
4. Temperature Intolerance
“The heat stuff kills me, as I am unable to cool myself off well when I’m dealing with the heat intolerance, because I’m dealing with the dysautonomia. I don’t sweat much so that doesn’t help either. I often wear a Camelbak and have a cooling rag I use so often, but I do get very sick when I get too hot.” — Saylor A.
“Temperature intolerance. I swear it takes nothing to make me sweat or feel frozen to my core.” — Samantha M.
“Sweating from heat intolerance, pain meds, and dysautonomia. Sometimes I’ll sweat to the point that it’ll be dripping down my back and my hair will get wet.” — Kathryn M.
5. Frequent Falling
“Joints popping out of socket and it causing you to fall down in public. Not only does it cause pain, but it’s embarrassing to have strangers look at you as if you’re intoxicated.” — Andrea K.
“One of the most embarrassing things for me is my tendency to have seemingly ‘random’ falls. My ankles/knees/hips will just… give out… and then I’m on the ground, sometimes with a sprain or other injury as a result. People don’t know how to react to a 30-something-year-old woman falling in public!” — Melissa H.
6. Dietary Restrictions
“I have a lot of special dietary needs. It’s embarrassing to go to dinner with friends and take 20 minutes to figure out what I can eat. Most of the time I get sick after meals even though I’m very careful about food.” — Lauren N.
“I have dietary needs and when I was younger if someone forgot my name, they would just call me ‘the girl who can’t eat anything.’” — Linnea J.
7. Joint Dislocations
“When I dislocated or sublux something and can’t use it very well for the rest of the day. If it’s my hip, I either need crutches, my cane, or help from another person.” — Sarah B.
“One embarrassing thing that happens to me is I dislocate my right wrist a lot and it can be really embarrassing when I’m out in public because I’m right handed and basically can’t do anything when it goes out of place (for example it once happened in a public bathroom when my pants were down and it took me over an hour to properly get my pants back up).” — Jill Studley
“I think the aftermath of the dislocations is the worst, because people don’t understand why I need different braces from one to day another, and constantly explaining yourself and having to justify how you take care of your body to people who doubt the legitimacy of your illness can really make you feel embarrassed or bad about yourself.” — Hailey R.
“My ‘Barbie’ hips. Anytime I stand up I have to bend over each hip to pop them back in. It is so loud and sounds horrific. My mom says it sounds like a Barbie leg about to break, other people think I’ve farted.” — Katrina G.
8. Irritable Bowel Syndrome
“Having IBS as a secondary condition. Everything about it is uncomfortable and unpleasant and can make or break plans you’ve made.” — Courtney M.
“I’m 30 and falling apart. I think the IBS is the worst. I get a lot of gas. I’m usually constipated, but diarrhea can strike at the worst possible moments.” — Megan M.
9. Painful Sex
“I wouldn’t admit to most people how much my health affects my sex life. It’s bad enough explaining why I can’t do as much as a normal person my age. It’s frustrating and embarrassing. Thankfully my boyfriend understands and accepts it.” — Lisa K.
“I dislocated my hip on my wedding night and many times after, too… he got to where he was scared he was going to break me.” — Mae E.
“I have a lot of sexual dysfunction. Hubby doesn’t get it often because I can’t and my muscles don’t work right together to achieve climax, etc. after.” — Jessica L.
“Bad pelvic muscles leading to bowel and bladder accidents. It’s extremely embarrassing since I’m in my 20s.” — Samantha N.
“Stress incontinence. My inner organs are all stretched out and my bladder is one of them. As my doctor explained it, my bladder is so large it flips over on itself and creates a second pouch that holds urine (urine retention) When I move and pressure is put on the pouch it causes overflow and I leak urine. I spent four days in diapers in the hospital as they made me hold my bladder for three hours for an ultrasound. My bladder stretched out like crazy and caused full incontinence for a few days until it retracted back some. It’s embarrassing to have to carry around an extra pair of pants and underwear.” — Jamie H.
11. Easy Cuts and Bleeding
“My fingers randomly split open and bleed. I also tend to have a lot of nose bleeds.” — Christa R.
“I get chronic cuts in my skin that will never fully heal. I assume it’s due to the tissue fragility that comes along with EDS. Not only do I get these tears that will bleed and burn in the corners of my mouth where everyone can see them, but also in more intimate and painful locations. I have been dealing with this particular aspect since I was 12 years old and was made fun of because of it.” — Mahala H.
12. Inability to Stand for a Long Time
“The inability to stand for a long time is the most difficult. It’s embarrassing to have to ask for a chair to sit in when I’m up for too long, and then look over to see a guy with a cane who is much older, who is able to stay upright. I look like a lazy millennial, when I honestly can’t stand for too long. I’m 19 and sometimes worse off than a 80-year-old… Family is perfectly OK with it but some of the other people I know look at me like I’m milking it. But I just honestly can’t stand for too long. It’s difficult for *me* to come to terms with because I was a certified nursing assistant for a year and was able to lift and move patients and work 12-hour shifts.” — Saylor A.
13. Dropping Things
“Dropping items because my fingers and hands stop working (especially the bottle of wine two weeks ago at Market Basket).” — Vanessa A.
14. Frequent Injuries
“Constantly being injured. I was literally known in high school as the girl on crutches, because I was always getting injured. I was always being judged for it, especially while trying to take dance classes, because no one understood why I got injured so easily. A lot of people thought I was making it up or exaggerating.” — Steffani D.
“I got a severely sprained ankled walking down the hallway at work. Flat hallway, no peeled up carpet, nothing in the way… just me… walking down the hallway, boom!” — Lisa K.
15. Esophageal Dysphagia
“Esophageal dysphagia. I can be eating the softest foods, and suddenly my esophagus will spasm, and I can’t swallow the food all the way down. Many times, drinking liquid doesn’t even help. I will be sitting there, unable to swallow, and equally as unable to get the food back up. Eyes watering, slobbery spit running out of my mouth, trying frantically to stop it, and being unable to do so.” — Kaye E.