26 Everyday Tasks, and What They Feel Like for a Person With Joint Hypermobility
Having a chronic illness can make simple, daily tasks extremely hard – just getting out of bed is often a hassle. But when you have Ehlers-Danlos syndrome and your joints are subluxating, or partially dislocating, these tasks may seem impossible.
“People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin,” according to the Mayo Clinic. As those with EDS know, this can cause a lot of pain.
I have witnessed my best friend, Hannah, struggle through her daily tasks for years because of her hypermobile EDS (hEDS). I have seen her cry in pain because her shoulder has subluxed while brushing her hair. I have seen her lie on the floor because she cannot muster the strength to make it to the bed, all because of her hEDS.
We wanted to show fellow hEDS warriors they are not alone in their struggles, so we decided to reach out to our Mighty community and find out which daily tasks they struggle with, and what these tasks are like, because of their hEDS.
To all those living with hEDS, you are not alone. We see you, we hear you and you are stronger than you know.
Here is what our community shared with us:
1. “Hand washing dishes. It’s so hard to prevent my fingers from hyperextending and hurting me later. Same reason rubbing in skincare products is a pain.” – Ansley M.
2. “Bending down to pick stuff up immediately dislocates my hips and knees. Trying to shave my legs is a pain because maneuvering to reach everything pops them out.” – Unity M.
3. “Sweeping my floor. After a while my shoulder and elbow start to sublux and roll around causing pain.” – Alexandra B.
4. “Putting on a pair of shoes can sublux my knee caps.” – Sarah S.
5. “Having a bath, getting in and out of the bath is nearly impossible sometimes as my hips and knees aren’t stable enough to step over the side and my shoulders can’t lift myself back out.” – Abi H.
6. “Going down steps! My ankles and knees can lock up or give out so the last steps can be a rapid, painful descent. My SI joint and hips sublux easily too and this is really painful. Sharp stabbing pain in the area with tingly aches all around. Sometimes it goes back easily, other times it can be days and sleep is then difficult.” – Louise M.
7. “Preparing a whole meal. Lifting pans, scrubbing potatoes or grating cheese, whisking or kneading etc. etc. Sweeping or mopping and vacuuming.” – Vanessa B.
8. “Trying to put my bra on with ribs and shoulders that subluxate.” – Heather E.
9. “Napping/sleeping. It’s extremely difficult to get comfortable and very common to wake up with dislocated joints.” – Sarah B.
10. “Writing. I’m in college and taking math courses so a laptop isn’t an option. Between my fingers locking and dislocating, it makes for a very painful set of homework problems.” – Kourteney K.
11. “Standing up from a seated position. It’s like a game of Jenga, will a joint pop out, or will I just crumble on the floor…?” – Charlotte D.
12. “Flossing my teeth, because the last joint of the finger I wrap the floss around tries to dislocate due to the pressure of the floss. Very painful and lots of weird sensations and sounds. Who knew even the simple act of flossing could be such a drama.” – Christina C.
13. “Sneezing. It makes me dislocate ribs so I have to physically push them back in place.” – Sage R.
14. “Drying hair. Trying to support or direct a hair dryer while also manipulating a hairbrush. The strain on various joints is very painful and even if you are lucky enough not to dislocate completely (I don’t) the hyperextension it causes pinches nerves, causes numbness and weakness in the hands, pain and weakness through the shoulder and elbow… the list goes on!” – Corinne S.
15. “Opening bottles, opening cans (once injured a rib while opening tuna…) carrying things with my hands, opening some doors… a lot of opening/closing actually.” – Mar M.
16. “Loading the dishwasher. It tires out my SI joints and then my back starts hurting so bad that I can’t stand anymore.” – Amanda W.
17. “Getting ready and getting dressed is so hard sometimes when my fingers hurt. Everything from washing my hair, to holding a hairdryer, to putting on pants makes my fingertips sublux. By the time I’m ready, I often feel so worn out and pained that I feel like I need to rest again already. I’m the kind of person who loves feeling put together with hair, makeup and clothes but the pain makes it so hard now.” – Meg S.
18. “I can’t do anything where I have to look down for more than a minute or two. So no dishes, no giving my kids a bath, no cleaning floors etc. If I do, it will be days or weeks of inability to hold up my head, awful neck pain, horrible headaches, nausea, dizziness, etc. It’s awful.” – Jennifer G.
19. “Reaching for anything, especially if I’m reaching overhead at an angle. It will almost always make my shoulders sublux. It makes my arms feel like I’ve got heavy weights in my hands. Both shoulders sublux, too, so it’s frightening to not be able to use either arm.” – Kathryn M.
20. “Pushing buttons. The microwave, pushing down the flusher on the toilet. I have to do it differently because my fingers bend alarmingly.” – B. N. D.
21. “Cutting my food. My finger joints bend backwards and I can feel my tissues stretching too far and the joint coming apart. It feels like my fingers are breaking… Think of bending each joint in your finger as far back as you can take the pain, then think how it would feel if you had to push two or three times as far. All day every day.” – Jill D.
22. “Cooking. It feels pointless. By the time I’ve managed a half assed meal, I’m too sick or in pain or exhausted to eat.” – Gaye D.
23. “I have hEDS and it restricts my walks with my dog. I struggle to lose weight and I have high pain levels. I find this thoroughly depressing, as I do feel like my life isn’t how it used to be anymore. I have become less and less active instead of building up fitness levels.” – Jude M.
24. “Wiping myself after going to the bathroom is by far the worst and such a huge thing that people don’t even think about. My fingers, ribs and shoulders sublux so sometimes I am crying in pain in the bathroom stall just trying to clean up. It’s embarrassing to talk about and embarrassing to be the woman in the stall crying out loud because of pain. It takes a lot of energy to do just that simple task.” – Andie W.
25. “Getting dressed. Seriously! I can’t count the number of times I’ve dislocated or subluxed things just by getting dressed for the day. Thank God for days I can stay in my pajamas.” – Kari R.
26. “Ugh. It’s easier to list tasks that are easy to do. That list is far shorter.” – Hope S.
If you have joint hypermobility and have struggled to do a basic task, do not feel discouraged. You are not “weak” or “lazy,” you are a warrior living through pain that others cannot even fathom.
What’s an everyday task you struggle with because of hypermobility? Let us know in the comments below!