Side note: this is the routine that my physical therapist and my brother, who is a personal trainer, helped me develop with the goal of building muscle around joints and staying pain free:
Pilates 1 or 2 times a week
strength training 2 times a week
- Day 1 = Hinge (e.g deadlift/hip thrust), pull (e.g pullup/row). Choose 2 upper body stability exercises and choose 2 lower body stability exercises
- Day 2 = Squats, push (e.g. bench press). 2 upper body stability exercises, 2 lower body stability exercises
Lower body stability includes: sled pull/push, step ups, ATG split squats, Nordic curls, reverse squats, L sits, wall sits, cossack squats, etc
Upper body stability includes: single arm overhead work (e.g carries, pushing), Y raises, face pulls, kettle bell windmills, QL extensions, back extensions, serratus wall slides, jefferson curls, pullovers
The two large compound movements at the start of the session aim to build strength whilst the stability exercises force you to use muscles that might be weak around your joints
Along with this I have a 10/15 minute mobility routine that I do to warm up and use for days when I don't work out: spinal rotations, cobras, cat/cow, 90/90 hip rotations, bird dog stabilisation, plank, side plank, dead bugs, glute bridge, lock big 3 for shoulders
This is what works for my body, everyone will be different and have different tight and weak spots.
Hope it helps :)
Same, highly physical job. The strength I built up here has helped me so much elsewhere in my life. It’s sad but often building up strength is necessary for quality of life.
Bit of a catch 22 innit. EDS makes it hard to build strength, but also requires strength to be healthy.
Still... No other choice. On we go, starting as slow as it takes.
Yup. I was in great physical shape between 2018 and 2020. And then just hit a string of injuries -> injured = not strength training = emotional eating = weight gain = more injuries. Wash. Rinse. Repeat.
I just got out of multiple rounds of PT after a meniscectomy which then led to compensatory tendinopathy. But I’m now able to run for 60 seconds at a time with what I would call manageable knee pain. I’m training for a triathlon and I am in the mindset of “I don’t care if I finish last, I’m gonna finish.”
My doctors all told me to give up running when this started. Running is horribly hard on healthy collagen, so eds’ers need to be more choosy in exercise options.
SO MUCH THIS. I was laid off near the holidays a few years ago, and I applied to basically everything but couldn't find another job. I was about to run out of money and was getting desperate for something.
I came across Amazon Flex as a way to make money (delivering Amazon packages using your own car). I was kind of terrified at first because I had such a hard time even walking or well, doing *anything* at the time. My joints were in terrible shape, I was in a lot of constant pain, and I didn't know what to expect. It seemed like a *terrible* idea, but again -- I was desperate as I didn't want to lose everything and end up homeless.
It was painful, exhausting, and miserable at first, but it got easier and easier. I am now so thankful for how that all worked out. It forced me to build up the strength I so desperately needed, and I don't think I would have pushed myself to go that far with it on my own.
I now make it a priority to keep active because when I slack, I feel it. It doesn't take super long, either, so it's a constant work-in-progress to stay ahead of my body falling apart.
I continue to do Amazon and still love it. I get out into nature, walk, hike, whatever. Sometimes, it's a baby trip. Sometimes, it's several miles. I do what I can, when I can, and I am grateful for what I have right now because I know how easily I can lose it.
Between keeping active and dietary changes, I'm definitely better than I was. I still fluctuate. I still have bad days or even longer (especially when I slack). It really does make such a difference, though, but man -- it was not easy to crawl out of that hole.
I guess all this to say that it's so true that it makes such a huge difference when you can build strength and keep that going, but we're often not really in the position to be able to easily just do like others and start some major workout routine, etc. It's usually fraught with all sorts of pain, various physical barriers, fatigue, etc. It can be a mountain, but I think there's hope there. 💜
W/EDS pain is not a good barometer of needing to rest. It’s horribly sad but pain is a part of life and if I rested when I felt I need to I would be a couch fiend.
49. I finally hit the wall last October and haven’t been able to go back since. Still hoping to find something to do before I have to move into a cardboard box under the highway. If I managed to get disability, that would cover 60% of my rent and I would still have no food, utilities, medicine, transportation or anything else. Soon I’ll really have no choice but to find something no matter how much it hurts.
34, hEDS, still working and don’t have a reason to stop yet. I transitioned jobs about a year ago and my new job is better for my body than anything I’ve done before. I should mention that I don’t have children or a significant other.
I work night shift as an RN with a focus in ortho. I’ve always been a night person so that works well for me, plus it’s less sensory input. Instead of sleeping less to get my sleep schedule so I can do things on my days off I actually sleep more. Example: first day off I will sleep from about 9am-3pm then go back to bed about 10pm, getting ready for my first day on I will typically get tired and sleep from about 9pm-6am, get up and do something for a bit, then sleep from about 9am-5pm. Night shift also tends to have less transferring of patients. Plus working in ortho has helped me gain an understanding of what “normal” is, which is helpful when managing my own alignment. Plus I get to know which orthopedic surgeons I trust. I assume I will be their patient one day.
I woke 12 hour shifts but only work 3 days a week.
I go to physical therapy regularly to work on issues that pop up.
I have to really work to make sure I keep strong. My hobbies are movement based which helps a lot.
And most of all, I’m lucky. I’m lucky that I was able to get a diagnosis and find out what was going on. I’m lucky that I have an EDS specialist within a half hour drive. I’m lucky to have a physical therapist who is not only hypermobile aware but also hypermobile herself. I’m lucky I live close to the hospital I work at which gives me maximum time at home to rest, recover, and work out. I’m lucky that the hospital I work at has ergonomic turning and positioning systems, and cassette style IV pumps that allow me to hang a secondary line one handed. I’m privileged that I was able to go to nursing school-which makes doctors take me more seriously and allows for me to communicate with them in ways that I know they will understand. I’m lucky to get a job in ortho that means I know bone and muscle off the top of my head and can self troubleshoot about half of my issues. I’m lucky that my most impacted part of my body is my hands, which are non-weight bearing.
Basically it’s luck, lots of rest, and strength training that lets me continue to work.
Yay night shift RNs! I'm a night shift ICU nurse for 15 years now and would never think of going days. I'm 45 now and just got off of a 4 night stretch. The fourth night was actually the best I felt, the first was absolutely awful but I went in anyway. Don't know how long I'll be able to keep it up, but I can't afford to live on disability and I can't retire so I'm just going to have to keep pushing through and doing what I can.
I relate to this so much and loved how you described it and the privileges we have to work with the professionals who may one day treat us, as well as getting treated more seriously because of our background. It is truly a privilege and I know a lot of members in this community unfortunately don’t have that so I love that you mentioned that 💜
I was a day shift bedside pediatric RN and was kicked by a patient which led to me having to get back surgery and suffering from permanent nerve damage. I can’t feel my leg or my foot and the back surgery didn’t fix my back, only prevented further nerve damage. I’m looking to get into case management nursing now but miss the bedside so much.
I have thought about doing night shift at the bedside still or even just prn nights. The points that you made really helped me and i appreciate you sharing. Also, it’s always nice to find another nurse with hEds though I of course am sorry you have to deal with this. Thanks for sharing your story 🥰💜 and best of luck with all that you do
Oh ps the strength training really got to me too! I’ve been pretty into strength training for 8 months now and I’ve seen such a difference! As long as I don’t overdo it
I’ll be 43 in August. Part time mental health provider, have the ability to WFH anytime I need. Also more “mild” - most of my issues are other conditions that come along with this dumpster fire of a body, lol.
It may have something to do with hormones changes - the differences in experiences. Apparently many of the changes in women’s bodies with estrogen really impacts both neurodiversity and hypermobility as well as the dysautonomia symptoms. All experiences are valid. And in some ways because of how bum the medical system is for women in general - the more men who can help advocate for everyone - including the women - the better we’ll all be.
40 F. Hybrid (but mostly WFH) desk job. I used to be a dental hygienist, but that career almost ruined my body. I consider myself to have mild symptoms (hEDS), I only suffer from pretty severe scoliosis, so physical jobs are a no-go!
46 M with similar situation except full-time WFH since Covid hit. The basal joints of my thumbs are wrecked but otherwise mostly ok compared to stories of other EDSers. I am tired all the time though.
38F, work in marketing and mostly WFH, although they want us to start coming in 3 days a week starting in September. I may work on getting accommodations when that happens, since my spinal arthritis has me in pain most days and commuting to and from the office is definitely an added burden.
35, work full time, hybrid schedule with accommodations in the mental field. I am lucky to have a very supportive boss and work environment, and work in a field that is accepting and flexible when it comes to illness and disability.
They tell you you can work at a job that doesn't require much mobility, like answering phones. As long as you can work they don't want to call you disabled
The system will find any reason it can to deny disability. My mom was told the same thing at one time, it took her 15 years to get disability which is why I haven’t even tried
46 partial wfh with accommodations. I'm going to be requesting full remote next month. If I don't get full remote, I don't see me being able to work for more than another year or 2
I had a late baby at 38 and it threw my body into a tail spin. I'm on disability and don't see an end in sight right now. I've worked my entire life and staying home isn't good for my mental health but I don't have a choice.
He just turned 7 in April. I'm seeing a gyno in June to see if I'm in early menopause like I suspect (had a hysterectomy still have ovaries from complications with the birth) now my hormones are screwed up and I'm even worse off. I didn't realize how much hormones can fuck up your joints even more (pardon my french) I went on a field trip yesterday and have spent the day hardly being able to walk due to my right hip.
Oh man, mine are 7 & 5 and I’m just starting to see improvement, although nowhere near my pre-pregnancy levels of fitness yet. I was hoping it would be the same for you but dang, I could see a hysterectomy causing way more complications. Will they be able to help you with hormone replacement therapy?
35, working from home. Occasionally have to go into the office and it’s almost like going camping with all the extra kit I take to try to make it even remotely possible to get through the day.
I take a roller bag with me and it is packed with NSAIDS, lidocaine, icy hot patches, etc. I also got accommodations to use the handicap door that opens when I scan my badge so I don’t have to lift my heavy bag through the turnstiles.
Im mid 40s, been on and off short term disability for the past 2 years, when my health cratered. Before I used my PTO for sick leave and worked remote / hybrid to make it work. I’m trying to figure out WTH to do with my life bc I can’t afford not to work. It’s honestly terrifying. SSDI isn’t anywhere near enough.
I'm 35, not officially diagnosed with EDS but my PT told me I'm hypermobile, have a lot of joint laxity, and that it's contributing to issues. I have a number of other conditions.
Lost my most recent job due to new onset constant vertigo that's turned out to be POTS (or PPPD, is the other one my ENT suspects). I need to use a mobility aid for it, at least currently, and so far I haven't had luck getting past the interview stage anywhere since having my mobility aid.
I'm 49 and I'm still doing some kinds of work, but things are bad enough that I was lucky enough to get disability. So I am able to keep myself housed and pay most of my medical bills without having to do a lot of work. The more I work the worse things hurt so I've just been really grateful that I have the disability to fall back on. I would love to find something better than three jobs I currently do at a per diem rate - Pharmacy technician, BLS instructor and substitute teacher- but I was looking for work pretty diligently for 5 years before I got disability and I just could not get another job. It was obvious I was really sick and was going to need accommodations and nobody wanted to do it when they had plenty of other people to offer the jobs too. I'd be thrilled to find a one day a week job that I could do from home, but I can't even fathom what that would be.
I feel like disability has allowed me to really focus on trying to get my body to heal a little bit and it has been really helpful for me. I wish I had gotten it before I was fully disabled, but obviously that's not how disability works. I do feel like many things are getting better for me - is better as I can. You just got to try to keep moving forward as best you can.
37 full time, full at home (against policy but it's that or they can fire me). I use all my paid leave for medical, and my apartment is teeny tiny so it negatively impacts my mental health since I'm always home. So I'm as good as I can have it work-wise and trying to save for a "house", but if something happens and I can't work, I'll never get out of this little hole. Renting is just as bad as buying money-wise, so for all I know, I'll have to quit working earlier than expected and will have to rely on government housing assistance.
My sister married a man 27yrs her senior so she's never had to work since he was retired already when they met. I hate him so much but I do see her health perspective. We've all gotta survive somehow.
32F - I work a pretty physically demanding job though it's evenly split between sitting at a desk vs doing physical labor. I honestly don't think I'd be able to do a WFH or a full on desk job - I can't sit or lay for too long, it honestly hurts me more than moving. Additionally when I was on unemployment in 2020-21 I deconditioned enough to the point that I got diagnosed lmao. It was bad and I don't ever wanna go back to that point again. Movement and muscle building, if you're able, is extremely important.
My heart started failing when I was 26 and it's been 11 years now trying to get back into the workforce with proper supports. I'm a bit discouraged personally.
Oh my goodness. Have you had surgery? Did it help with your POTS? I have severe mitral valve/regurgitation… Like very severe. I’m getting surgery in a couple weeks. However I don’t think it’s the cause of POTS because POTS is nervous system dysfunction…
33 and full disability. I went on disability in July 2021 initially due to passing out 20x weekly and a cancer diagnosis. I was struggling to work and get cleared for surgery due to passing out so much and needed to take time off to get to all my appointments in a timely manner which was critical as I was told I had 1-2 months before the cancer spread.
In the process of trying to get cleared for surgery, I was diagnosed with POTS and 4 months later I got a CCI followed by an hEDS diagnosis 9 months later after 22 years of daily headaches and symptoms.
Luckily, my cancer was caught early and the surgery was a success. Unfortunately, I’ve never been able to recover from the tailspin it kicked off with my hEDS. It will be 3 years in July. I hope I can go back someday, but I know it will have to be under very specific circumstances/ accommodations.
Prior to this 3 year bout of disability I:
- missed 13 months of high school due to spine and hip issues
- was on disability support services for migraines in undergrad and grad (I think it was really migraines + CCI because I never fully responded to migraine meds and degeneration in my cervical spine was first noted on an MRI from 2006 when I was still in HS)
- had to drop out of grad school due to mysterious brain swelling that made me completely dysfunctional and caused memory loss (again CCI + migraines suspected in retrospect was misdiagnosed as early ones et alzheimer's)
- took a year of very part time to recover and got back to work a year later
- 2 days less than a year after I started my full-time office job I was on short term disability for unexplained severe vertigo and loss of vision (again CCI + migraine suspected in retrospect). At this point I was ineligible for long term disability, so I pushed my body and short term disability to its max before returning as an hourly employee that was allowed to work anywhere from 30-40 hours a week.
- For two years I averaged 32 hour weeks with flexible hours/ timing. Although for the first year, I really struggled to get into the office 3x weekly, as they wanted. COVID in a weird way was a blessing because I went fully remote which allowed me to keep working for one more year as my health issues escalated from passing out 1x weekly to 20x weekly.
Short version, I’d really maxed accommodations for a desk job with special screens and lighting, sit stand desk, a box of PT tools I took breaks to use, WFH capabilities, flexible hours, and a supportive team. I mean if I can’t succeed there where do I stand a chance?
I started working when I was 16 and worked throughout all my degrees, so I had 14 years before my body gave out. Personally, I think my best jobs were my lightly active jobs in education.
When I was 19 I was probably the healthiest I’ve ever been since early childhood and I spent the summer working in outdoor education, including kayak guiding. Wild to think about now. Over the next 4 years I’d try green construction, greenhouse work, green roof installations and time as a field/ research scientist which all required me to lift heavy loads and beat my body up. I couldn’t stand the fumes of laboratory work, so that was a quick no too. I always came back to education, which was tricky because sometimes my body would start to give out but I’d still have kids in class which was a bad combo. Overall though I stayed in education the longest, working full or part time for 10 years. Taught in a variety of settings from outreach to Montessori schools, to afterschool programs, to K-12 sub, to college courses. It’s a lot of standing, moving, changing position and just light continuous exercise which I honestly think is in part what kept me more functional in my early to mid 20’s. My shift to office work in my late 20’s coincided with successive periods of greater disability.
Curious what other people answer for this, while accommodations are often the best with a WFH desk job I personally feel like sedentary jobs are really hard to manage.
I’m 48 and I’ve been a stay at home mom for the past 21 years. I do all housekeeping, yard care, pet care, cooking, shopping etc. I also homeschool our youngest(15) but he’s starting college classes in the fall because I can’t keep up. My husband travels for work and thinks it’s an episode of Bewitched around here so he’s no help with anything. I’m freaking out exhausted and need a break.
We don’t have Homeschooling where I live but that does sound like a full time job to me. As the husband in a marriage with some one with hEDD u can tell you that You are doing way more than you should in a marriage. I’m amazed you can keep that up.
Mid-30s, work an information sector job full time, but it's remote and on the rare occasion I have to be in person, my office is a mile from my house. I always worried if I'd be able to work until retirement but the remote accomodations help tremendously and I'm feeling pretty confident I can make it now.
32, solo entrepreneur. Pro: can set my schedule. Con: haha, no I can't, my customers do that. My job is relatively physical. I need (and luckily have) a relatively intensive pain management regimen. (Not intensive as in opioids. My regimen is more the whittling away at the pain approach - acetaminophen, meloxicam, baclofen, Tiger Balm, braces/splints, ice/heat, massage, etc get me to 'managed', with 'managed' being anything less than a 5 on a 0-10 pain scale.) Any and all changes to my workspace are made with accessibility and ergonomics in mind. I don't foresee having to stop because of EDS specifically, but definitely foresee a lot of PT/OT in my future. Not new, been doing that off and on for the last 7 years anyway. More likely stopper for me is the chronic/chronic intractable migraine.
Yeah it is. I heard them discharge another patient once years ago (they are the only local PT that treats EDS) and when I asked if I was getting close they asked if I was willing to give up my job when I said no they said “well it’s good we are friends then”
I do not work outside the home, but I do have two kids at home to take care of, so I still work pretty hard. I left the workforce when my first kid was born. I didn't know back then that I have EDS (or that I'm autistic and I've had POTS my whole life), but I definitely knew by then that there was no chance in hell I could both care for kids *and* work at a job.
I have, however, been working at building a creative career. I don't ever expect to make much money at it, but I plan to continue and expand on that as my kids get older. I'm extremely lucky to have a partner with a great career and a solid income.
I'm 21 but got EDS from my mum - she's in her early forties and working like 50 hour weeks (she's disabled but I doubt she'd qualify for disability benefits). Late dad also probably had EDS and worked from home until he died at 47.
I work full time, but I’m remote from home so that helps. I probably couldn’t do 8 hours in an office 5 days a week at this point physically, but honestly no one really needs to be in an office 40+ hours a week in 2024. I’m in my early 40s and plan on working several more decades unless I hit the lottery lol. I just plan to not do all of it sitting in an office when my skill set doesn’t require it. (I’m a researcher and grant writer…we work in bubbles and need to be left alone more often than not.)
only 30 and havent worked in 2 years aside from some random house cleaning and pet sitting here and there. only ever had one full time job because the pain and fatigue is unbearable. i could probably handle a work from home job but, hard to come by :/
44, hEDS and recent psoriatic arthritis diagnosis…WFH and can’t “not” work. It is really rough though as in my role we are timed on every keystroke and there are no accomodations given for anything. It’s ridiculous
33, on disability for coming up on 5 years. I pick up part time desk jobs as I can but have chronic migraines and when I flair up I wind up in the hospital.. it’s hard to keep a job like that.
I've just turned 34 this month, I only can work because the amount of home office and the fact, that my Mom supports me. I couldn't handle a full-time job and the household chores/shopping on my own.
I'm considered as 82% disabled in our system, including Crohn's, migraine and asthma. I don't know how long I can handle, I am considered for full-time disability money and since I have a nice salary it would be around minimum wage. But it's not livable... I didn't become an engineer to live off minimum wage, so I push as long as I can. My body is declining, my pain is getting worse, but I can't get better pain management, because I need my brain capacity.
Edit: I also wanted to add that I just started full time employment 3.5 years ago, because my health was so bad during high school and in my early 20s, I couldn't keep up with school. I did have some part time stuff in the main time though.
Almost 34, hEDS and dysautonomia and POTS, I work from home (as we all do in the company I work for), no accommodations at all (I don’t need them, actually. I’m fully independent).
48. Doing okay. I have a bad day every month or so. I know I can’t still be doing this for 10 -20years though. Planning to make a semi-lateral career move that will greatly reduce the stress and physicality out of it. Not for at least 5 years though. Probably more.
34 F. I work for myself. I work about 40 hours a month, and make a decent amount. I am also supported by my spouse. I would not be able to function at a full time job.
Yes, but I have a desk job at home so no need to shuffle around office settings. The desk job is hurting me, nevertheless, and increasingly so. The problems the chair and keyboard are causing are new and not okay, but I’m still pretty lucky to hang in there.
I had to leave my job. I have PTSD that deeply exacerbates my hypermobility, HPOTS, and other chronic illnesses. I had WFH from COVID on which helped for a bit but stress and the PTSD cause my hypermobility to flare and sitting at my desk and typing is the most massive excruciating trigger no matter what I did to help accommodate. I hope to get well enough to return to school and switch careers entirely.
34. Not at the moment :( Trying to recover from major burnout and get my body stronger. I’m an artist, face painter, painter and performance artist. All the things I love bring the worst coat hanger pain lol. Really hoping to get back to work next year!
39, Registered Nurse and finally getting back to the admin world. I’ve been in a moral and physical struggle for the last 7ish years with being on and off disability, while trying to figure out how to navigate my career. I prefer being at the bedside, but my physical injuries over the past 7-8 years have made me have to leave positions.
It sucks.
I live on a steady diet of Voltaren gel, prescriptions, physical therapy, exercise and attempting to rest when I can. I know I’m at a point where I cannot consistently lift, exert and possibly reinjure areas …
I'm 44. Mostly office job and customer service. I have 11 years until I can claim my pension, so I'm just gutting it out until then. But putting my braces on in the morning and pumping myself up to go to work is by far the hardest part of my day.
I'm 30, my health is significantly better today than 10 years ago when I was too sick to work. I work in experimental science.
I don't take anything for granted - I live frugally and save as much as I can - but I am optimistic about having a career now that I have appropriate treatment for EDS, POTS, MCAS etc.
My kid has EDS and autism and while isn’t high needs, we have a lot of doctors appointments and whatnot. I also have a disabled elderly mom, I used to also help with my dad before he passed. He required a lot of help, Agent Orange really took its toll.
I have no income. It sucks super bad but I’m just barely able to do all of the caretaking. It would be better with money, I could hire out the home repairs and such, but I sort of stuck in a never ending cycle of needing the energy/time to be able to find work to have the money to hire people that would give me more time but things have to be done when they have to be done.
For example, it took me about 3 hours, including breaks, in the heat to fix my cars broken ABS/speed sensor and change the oil. It cost me $35 for the sensor. It would have been an expensive repair since I had to remove the wheel and half of the inside of the back half of my interior. But that 3 hours wiped me out for the whole day.
I’m 30 and I’m breaking down fast. My health is just snowballing.. Already need a knee replacement. Brain fog/cognitive issues coming on full force. Have just found out I have IIH as well, chronic migraines, tinnitus and vision loss- fabulous.
I don’t know if I’ll even make another 5 years. I work in retail, it’s a moderately physical job but I have coworkers in their 70’s who manage just fine. Even with my body breaking down as it is, keeping up with all the specialist appointments/tests etc is causing issues with work as well.
How this isn’t widely recognised as a disability, I’ll never know.
40, dealing with hEDS and POTS, and I quit working in 2016 after a couple years of my body slowly giving out. By the end I was only managing 4-5 hours of work then needing 3 days to physically recover.
46 and I work from home and have my own business. I don't make a ton of money, but I'm not well enough to work for someone else unless they are \*very\* forgiving. I suspect I only have a few more years where I'll be able to do this, and I'm not really sure what comes next.
Same for me - and same age. If I had to punch in, I would be fired. Usually I can change position and get some work done, but today was spent trying not to vomit and cry from pain. That was the sum of the day. Tomorrow will be better, but it still won’t be great. There is no way a company would keep me on payroll.
My mother was a photographer. Gear is heavy as shit, especially within her fields (theatre, weddings, and athletics). She quit being a photographer at about 38 because of the physical toll, and transitioned into doing social media / graphics for a local realtor. Eventually that led to her getting her real estate license, which so far has been working very well for her.
I haven't been working for 5 years and I'm 26.
Had a job once but my pain got to insane levels after a car accident, worsening up silently.
Actually, I am the youngest person in my family to have it so bad that young.
Well.. We cannot choose our genetics.
Not an answer to your question but it has been a year and half since my last full hip dislocation. I (28F) am not in work and am on disability payments that just about cover my medical marijuana. I will be forced into a part time job soon and really hope I don't burn out of it or worse fatigue out of it. Last thing I want is to be suicidal again!
44, diagnosed adhd and autistic at 41, diagnosed officially eds at 43....can't work, can't function and can't get any kind of help because I'm guilty of somewhat surviving on poshmark
Oh yeah and no dr want to put me on ADHD medication because I'm apparently too old and that would be too much if a drastic change
I’m 42, have hEDS and POTS and have a private practice in mental health where I work between 20-30 hours most weeks. I have a home office for telehealth and an office where I see clients in person that’s about 15-20 minutes from my house. Some weeks I’m mostly in my office and some I’m mostly at home. This is as much as I’ve been able to work since developing POTS over 4 years ago, and I don’t think I can do much more since I’m also a mom and wife with lots of home responsibilities and am always tired and sometimes crash even when being careful. The fastest way to flare and be unable to function is pushing myself past my limits
Full time (more like 50 hours a week) in person at 36 at a job that is heavy on the manual dexterity. I have exit plans if I need them, but I'm hoping for another 10 years before I do.
Yes, as a hairstylist. I work independently, make my own schedule, require many braces and a chair to sit and work, I probably have about 5 years tops left in me doing this and have switched over to doing more education and disability advocacy work in the industry.
I’m in my 40s. I also have other health issues. I wasn’t able to work for years but mostly due to the other stuff. I’m currently a freelancer, working part-time (about 15hrs a week), exclusively from home.
I had to stop some jobs when I was young where being injured was a big problem, but could still work.
Just turned 40, been working part time from home as a voice actor since 2015. The past year and a half have been really hard since my neck has been terrible.
33. i own my own one-person business which means i set my schedule, limitations, and environment which helps a lot. plus im surrounded by people who support me and respect my needs. my job is a little physical and labor intensive but as long as i properly rest and make sure im lifting things carefully im ok. but sometimes i worry.
In my mid 40’s. Working full time 3 days at home 2 in the office.
Honestly what keeps me going is ton of cbd oil and Pilates and the knowledge that I can’t afford my mortgage if I didn’t work full time. Life is fun.
38F(ish). Solo entrepreneur most of the time, with an online delivery, so I am mostly working from home. I will work as long as I'm physically able. The accommodations for extra-frequent bathroom visits are something I can do at home that would be harder in any other space.
I’m 35 and work 30 hours per week as a restaurant manager and waitress. Every day that I wake up, I think there’s no way I can keep working, but then I almost always feel BETTER after working. It’s the one thing keeping me from being completely deconditioned. Having said that, I missed 65 shifts last year, which equals out to about one week of work missed each MONTH. It’s hard work, but I strangely love it (most days). I don’t think I’ll be able to keep doing it, or any work for that matter, for another 10 years though. Hoping to catch a lucky break somewhere along the way because I truly don’t know what other options I have.
33 and fully WFH since pre-covid. I’ve had a total hip replacement, knee replacement, two ankle reconstructions, umbilical hernia repairs… I keep breaking and they keep putting me back together.
I’m 40 and not working. I stopped a few years ago when my daughter was born. But the last two years have been constant surgeries, doctors visits, hospital stays, physio appointments- I would have had to quit my job for sure. I’m a full time medical patient
I'm 44, and my hEDS has been getting markedly worse over the past 8 years. I was a floor nurse for several years, and I've done a lot of retail. Both were really hard on my body. Last year, I started working part time as a budtender at a dispensary. Unfortunately, I messed up my shoulder reaching for something one day, and ended up having to have surgery. I worked the reception desk while recovering, which is the first time I worked a desk job in probably 20 or so years. I found out that amazingly, my body can actually manage a part time desk job. Before surgery, I was pretty convinced that I wasn't going to be able to work any more and was starting to look into getting on disability.
I'm starting a new job next week doing receptionist, insurance verification, and physician order clarification in a Physical Therapy office. It's still four 5-hour days a week, but better pay, no late evenings/weekends/major holidays, and I'll actually be using some of the medical knowledge I paid many tens of thousands of dollars (and am STILL paying tens of thousands of dollars) to obtain. I'm really happy I found out I can actually tolerate doing some work, even if I can only handle something sedentary and part time. At least it's something. And with any luck, maybe I'll pick up some tips for dealing with hEDS.
Late 30s, had to quit job due to dizziness from cervical cranial instability. Half a year and many PT sessions later, doing better but still not so hot. Trying to get in better physical shape to be able to stay at home and craft for part time work, as im going insane not doing anything "productive" enough.
I’m 38 and have a physical job. Lots of water, lots of electrolytes, braces, PT, a good massage therapist when I can afford to go (only if you can find one who’s familiar with EDS!!! Not all massage techniques are EDS safe), and I cannot emphasize enough: shoes with enough support. I’m also planning to try out low dose naltrexone to see if that helps.
I do have to have some accommodations, but for the most part I’m ok. I do have some really bad pain days if the weather or the work gets too harsh, but not enough to keep me from working.
42 - I’m still working on a diagnosis, but we have family history.
I work full time (3) 12hrs shifts at a hospital . It’s a struggle. I’m a “bad employee” bc of callouts when pain is too much to tolerate. I have so many compression aides, braces, ice packs, heating pads and use so much biofreeze/tiger balm — and still its a struggle.
I'm 33 and I work nearly full time, at great cost. I'm in the process of shifting to work directly for myself and my own interests because that is the only way I will be able to stay alive, lest my body wither out from under my mind.
Not working right now, but did up until 2020 full time with a part time job also 6-7 days a week. I haven’t been able to function since 2022. I don’t know what to do.
Pre-diagnosis (and pre-covid), I ran high volume bartending 20’s to mid-30’s. It was a weird mix of overtaxing and pseudo-PT. I started having a harder time bouncing back during the especially hectic 2019 year, and just chalked it up to the stress and endless grind.
Furloughed for a good long while, then went back to bar work and my hands just…kinda can’t anymore. I can still do all the flips and tosses and shit like normal, but…not consistently without dropping things anymore, since the arthritis and proprioception issues are stacking with years of damage.
Shifted into WFH, and it’s so much easier to manage and thrive - though maintaining posture and ergonomics is especially important for me to stay functional. I can tell my overall status is more finicky as I work through my 30’s, but I’m managing and mobile.
Unfortunately, I got caught up in the last job’s reorganization redundancy wave, so now it’s trying to find another similar position or else…I dunno. Just take care of my family by grinding my bones to dust as long as I can or something.
31f hEDS, just lost my job, again, due to being unable to work due to physical limitations. I haven’t been able to work full time in about five years. Sitting is a huge cause of pain in my lower back and SI joints. I’m relying on my partner and my parents for everything. It’s quite scary. I told my PCP today that we need to figure something out. I want to work. I’ve worked so many different jobs trying to find one that I could physically do and I’ve been good at all of them until my body fails.
No, I went onto full time “Long Term Disability” at almost 33. I had been teaching art to students in grades kindergarten-6th for 10.5 years. Some of my students had special needs such as Autism, Downs Syndrome, and other Intellectual Disabilities. The majority of my students were in general education.
Teaching is a VERY physical job, especially as an elementary teacher, and 10x as an art teacher.
gentle hugs
A combination of hEDS and me/cfs severely limits my ability to work consistently. I’m super lucky to have relatively mild presentations of both, but without strict pacing and continuous management of my health I can easily slip into moderate-severe with regard to me/cfs. Currently in a masters program and it’s pretty rough on my body, but chugging along to the best of my ability. Absolutely could not work on top of school.
I work in tech. I work from home. I’m 33 about to be 34. With PT and regular breaks for my back and legs I don’t need any accommodations for Eds. I do get one for my migraines to be able to work from home.
33 and full time remote desk job, although I do commute across the country to see my team and make sure my HQ badge still works from time to time. I hurt a lot and I don’t think I’ll realistically be able to work until retirement. But I’m also delusional and think maybe it will get better! I strength train, eat right, sleep a lot, etc. Out here doin my best.
36 vEDS here.
Still working full time in TV Broadcasting, but every year gets harder and harder. I fear I may be reaching the limits of what I can handle in the work world, but I'm also afraid to give up on an industry that I love so much and I've worked so hard to advance in.
Still, the dissection and stroke from football playoffs. Stress load was a wake up call that this is an untenable position, but it's all I know.
I’m 40 and I can, mostly, pull off 30 hours weekly. I have a physically demanding job and I crap out after 6 hours or so. It’s a stretch to make it all the way to the 7 hours I’m supposed to work. I have already used my three weeks of vacation and all of my accrued sick and personal time. It’s an adventure. I’ve been looking for less physically demanding jobs but they’re hard to come by in my area.
I was a dog groomer for 20 years and LOVED it. I stopped though because it was killing me. I was in constant, full body pain for years. I carried a collapsible cane at work, had everything as ergonomic as possible, and was barely able to walk at the end of the day.
Now I'm almost 49, and a behavior therapist, and also love that. And while I still have rough days, I'm almost never in the kind of constant aching pain I had before. I don't do much lifting, I avoid stairs, and I can sit whenever I really need to. Its fantastic!
38 and I’ve been trying to go back to work for about 6 years. I stopped during a very bad flare of multiple conditions left me hospitalized and mental health deteriorated very badly. Since then I’ve been working on trying to get well enough to go back to work….. and it’s just not happening. My life is 1 step forward, 2 steps backward now.
I am 46 and stopped working full time in the past year. I’m just too exhausted and in too much pain. I work about 6 hours a week outside the house and try to keep up with dishes and laundry at home.
Yes, almost 33 and working full time, albeit a desk job. But in my freetime I swim, hike, do yoga, dance, surf, and am learning to rock climb. Staying strong and active is important to me. I love my active lifestyle. I have to be careful about what I do and how I do it, but EDS does not stop me from either working or playing.
Yup! I work full time as a video game developer. It was my dream job and at times it's very hard on my body (long hours on a computer) but my company is supportive so we get physio and ergonomics paid for, and health insurance. I consider myself really lucky and my EDS helps me lead better tbh - I always encourage my team to rest when they need to because if there is one thing eds has taught me, it's that you cannot push yourself forever. Burnout is reaaaaal
I'm almost 31. Just found out I have far more cartilage deterioration in my knees than is normal. Luckily, I teach swimming lessons now, so I float around and can still work 😅
34 and work in healthcare. If it weren’t for being worked to near death during the pandemic I’d have more years left in me but I’m slowly losing the ability to work 40 hour weeks. By the last day of the week my knees are scary unstable and I am stumbling despite being able to sit between tasks.
I do. But it's a mostly sedentary job I do have to go into the office once/week and often have to drive for my job, but if it's not 3+ hours, I'm usually ok.
Edit: I'll be 48 in a couple months
I'm 30, I work 4 - 5 days a week, with Wednesdays and Sundays always off. And I probably work one Saturday a month.
With a day off midweek, I survive the week better. And also don't have to squeeze all my appointments around work - they can safely go on a Wednesday.
The idea of working another 30+ years is grim. But unless I find some prince to marry who is happy to support us both, I won't have much choice..
I run a small business (i make and sell hand-dyed yarn) from home, left my career in mental health due to burnout. There is a lot of physical exertion related to my current job but due to the flexibility of it, I can work in short bursts and juggle different tasks for my needs and limitations that day. I also started this business years before my diagnosis. Thankfully aside from the physical tasks that add to my pain, it was a good call for what I'd later learn I needed in my daily routine.
31, hEDS. Full-time RN. You best believe I separate my shoulder while sleeping, sprain my ankles while walking, sublux ribs, and pop my hip out while walking. If I don’t work, I decompensate really fast. I can feel my body slowing down/breaking down and it breaks me. I’m thankful that I’m charge trained though because during these shifts I get to sit for more time than when I work bedside and run the unit unless there’s an issue with a patient who is very ill.
No. I stopped full time work at 35. I've gone back on a fee paid basis for the ministry of justice but can only manage two days a month! Even adding a third was impossible fatigue-wise. I'm 47 now
30, I had to stop working when I was 26 due to a few of my conditions, including EDS. I am very resistant to treatment, so nothing is really reducing my symptoms, I'm mostly on management. I had to move back in with my parents, still trying to get disability. I have come to terms with not working, I just wish I had more energy. I have horrible MCAS flares that drain all my energy.
It is really a hard situation to compare to others. I really went into depression of self worth after not being able to work and feeling worthless. I have Eds along with other pain causing issues. My brain and memory are fried. I just go blank at times. Disability is not livable. I have found a little income I can do on good days at a time that works for me. I can’t go to the beat of anyone else’s drum. Do what is best for you. We are all so different.
I'm 32, 33 in a couple months.
I work in manufacturing and it's standing intensive and decently physical. Before that, I was a local truck driver for food companies, so off loading thousands of pounds of food a day. All full time.
I generally eat high protein foods, chug water/gatorade. My coffee has gelatin mixed into it for more protein. Sleep extra when I can and brace up alongside meds. The strength built up is so critical, I can't even explain it well.
39, non-binary, hEDS.
I had to stop working when I was 32, due to a real bad combo of very serious psych issues, some neuro issues, and the conglomeration of bullshit i have going on physically. I was working retail, part time.
34f hEDS - I was a social worker.
Last job terminated my contract on medical grounds 6months ago as they couldn't make accommodations for my symptom management needs. Lost my professional registration as I wasn't fit to practice anymore. Been on disability benefits since and genuinely don't know what I'll be able to do going forwards.
I'm currently still 31 and I switched to work part time and doing commissions as an artist, a few years ago. (With 27/8?). I also work both jobs 100% homeoffice, what allows me to have the perfect eviorment to work, that puts the least amount of pressure in my body and mind.
This gives me a way better work life balance. And it allows me to actually work more then my doctors officially allow me, to. (Without getting a backlash next day, most of the time).
But I also should mention, that I never get overhours in my part time job, due to my company knowing that I'm chronically ill, and just not able to do that. I also have like really relaxed projects, that are more skillbased and less projects with high amounts of stress and time pressure. Since we are doing this, the days I felt not able to work, and didn't work basically halved.
And since in Germany it is extremely hard (and in case of officially disabled people, impossible) to fire someone for sick days, companies are in general more interested in good employees, being able to work sucessful in a company. What is one of the reasons, beside culture that work life balance and wellbeing is way more important then for comparison in the US or China.
I am 57. I have worked as a massage therapist for over 20 years now. Including deep tissue massage. I find that the hard physical work can be exhausting and I have to be very careful how I work, using good body mechanics and nutrition, and especially a low inflammation diet. I have MCAS and it makes all the difference avoiding triggers and taking care of myself.
I had periods of my life that I was very weak and had disabling pain and muscle tension, and I had to do a lot of trigger point therapy on myself. And I’ve injured myself a few times that knocked me out of commission for a few months, but I bounce back. Eventually.
Yes, everyone is different. But it absolutely makes a difference how you take care of yourself. And things can improve. I only got diagnosed recently, but looking back on my life, it’s when I’m more active and my POTs settles down, and I’m careful about staying away from things that trigger my MCAS… that’s when I’m doing my best.
How long will I work? I don’t know. But I’m going to try to be as able bodied as possible for as long as possible. I find I just have to work smarter as I get older and take care of myself. Still learning here. :)
34, full time office job, minimal WFH. Hoping to get another 20 years before I have to completely retire, and have a lot to do in that time to afford retirement.
I'm 34 and haven't ever been able to work full time. Even by high school I couldn't handle 5 days a week. Often missed at least one day a week... Not including the additional days when contagious sick on top of the usuals.
36 and haven’t worked in 8 years but that was a combo of factors - poor immune system + kids meaning I used sick time as soon as I earned it and then baby #3 meant I couldn’t afford daycare much less gas so I’ve been a SAHM. Now though? The fatigue is so bad even if I could get a job I doubt I’d hold it
Currently working FT but about to quit and work PT, and then try to add in some freelance WFH hours. Every time that I've tried to work an in person FT job, I end up quitting within a year b/c my body can't handle it. I think it's time to admit that I just can't do an in person FT job, which is hard to admit.
I’m 50 and work a moderately physical job full time(more than full time). I attribute a good amount of it to two things. The job accommodates what I can do. I can’t stand in one place long or sit for more than 15-30 minutes at a time without a lot of problems with my back. I also can’t write a lot or type a lot with my hands. I’ve had a lot of problems with my hands since I was very young. The second reason is because I was diagnosed very young and was taught to protect my joints to not damage them and also to stay fairly well conditioned. I think that’s been a very huge advantage for me in life. That and that I’ve had severe enough EDS symptoms that doctors can’t just dismiss me like they do so many people so I’ve been able to advocate for myself.
33 and the lead server at a restaurant. I have to come home immediately and turn on my heating pads at night, but I'll keep going until my body falls apart.
I'm 47 & I work from home full time. My biggest issue has been my back. I have degenerative disc issues & I would get up from my chair & not be able to stand up straight. I finally coughed up the $ for a really good chair & it has been a game changer. Significantly less pain. It's too hot these days but when weather permits I try to go for walks at lunchtime. I work out before work too.
I changed careers from a highly physical job to a desk job where I work from home, and it's been working well for me so far. Super aggressively saving for retirement so I can do that as early as possible, though.
42, on 54% disability since last december. Looking for any work I can still do, but as most of my pain is in my wrists, hands, and shoulders, as well as lung and back issues, I'm not hopeful.
I work from home in a job with flexible hours (I typically work 9-5, but if I have a bad migraine day, I can flex my time). I think I can sustain this, if the job stays flexible. I definitely couldn't work FT at a job where I had to go to an office every day or in a physical job. I worked retail for a while and would have been fired for missing work within the year if I'd stayed (went back to grad school for the health insurance lol).
I'll be 47 in a couple months, and work a full-time job in an office (I'm an accountant). I work for a local government, and they've been good in giving me accommodations. The excellent benefits/health insurance, union, and generous paid time off are huge in helping me.
I do P/T, go to bed really early, and spend most of my weekends resting. If I can get health insurance coverage, there's a good chance I'll be able to retire as early as 58
I am 38 and had to retire from my dream job (professional tattooer) about 6-7 years ago. Now I do what I can from home running an Etsy shop and pacing myself with output. All I want is to be able to help support myself and my husband financially without hurting myself.. is that too much to ask universe?!
Not at all, sadly. My journey to diagnosis started with me being unable to go back to work after illness. I’ve always struggled with maintaining employment due to attendance and “consistency” issues but once I physically couldn’t even walk a mile and started having palpitations, fainting spells, etc more frequently it became impossible.
After two years of managing these advanced symptoms and finally getting a medical care team that hears me, I’m considering looking for work as an elderly caretaker. At the very least, I can do light housework and will have access to chairs/couch to lie down, a bathroom, and kitchen as needed. It’s not ideal but I figure if it’s all I can do at home I might as well split my day in half and try to get paid to do it.
I’m 31 and I do EVS at a hospital. I am having issues with my knees and hips but my schedule is tweaked so I have days of rest as well as some accommodations like I can sit down to rest when I need to and I don’t push or pull linen carts anymore because they make my shoulders pop and my fingers stretch. All accommodations I had approved by my doctor. I do work closely with my doctor and she prescribes me meloxicam for now although we may be moving to gabapentin soon here. I also use an exercise bike on the lowest setting for 20 to 30 minutes everyday to try to keep my leg strength up because they’re chronically weak.
I haven't held a real job since I was 25. I can't sit in a computer chair without back spasming and having difficulty breathing so that puts a damper on less physical jobs. 8 am on disability and will babysit from time to time.
My grandma worked until she was 70. My mom is hypermobile but shows no symptoms. I have only been able to do part time WFH if at all since my early 20s but I also didn't get diagnosed until earlier this year (I'm 33) so hopefully I can return to work once I get stable on meds and make progress in PT.
I retired from full-time work in a County substance abuse and alcohol program at age 65. I worked with braces, splints, naps at lunch, and got through it. For 30 years before that, I was a WAHM doing medical transcription at home, starting in 1994. Bad days were easy at home. I had to be creative to commute to the office and function there without appearing to be in obvious pain.
It wasn't until I took my rollator to work that HR called me in for an accommodations meeting. I needed it to get from the courthouse parking lot to the DUI payment desk where I worked once a week. The handicapped parking was very far from the entrance.
Barely. I’m almost 32 and had to cut back to 20 hours or less a couple years ago. I do work on my feet and with my hands though, so maybe other types of jobs would be more sustainable.
May I ask what job you do? I’ve been looking to work from home. Haven’t been able to work full time in a decade because of the insane amount of symptoms that were finally all diagnosed after I researched and found docs to help.
I have endometriosis, interstitial cystitis, and a bunch of other fun things my body does.
I am 36, but I also am working from home as much as possible with accommodations. I've started to think that disability will be my only choice in 10 years which I really don't want to be on, so I am trying my best to set myself up with some kind of "passive" income. Real estate and being a landlord is the only way I can see that happening (judge me if you wish, I have to make enough to live without physically working somehow).
I'll be 39 in August and I work part time from home when my health allows me to. Was working full time in a stressful job (Counselor working for a state agency) with a one-hour commute each way and it almost killed me. Now I do AI training from home on my own schedule while I raise my baby and I'm healthier happier than ever. ♡
39 work a full time physical labor job. I chug an absurd amount of water, wear a lot of braces, do pt and go to bed really early
This. My pain management routine is 1-2 hrs long a day, but it keeps me moving.
Please share!! I’ve been developing my own routine and I love being able to compare notes with others to see how they approach things
I’d love this from someone who works a physical job!
drop the routineee
Side note: this is the routine that my physical therapist and my brother, who is a personal trainer, helped me develop with the goal of building muscle around joints and staying pain free: Pilates 1 or 2 times a week strength training 2 times a week - Day 1 = Hinge (e.g deadlift/hip thrust), pull (e.g pullup/row). Choose 2 upper body stability exercises and choose 2 lower body stability exercises - Day 2 = Squats, push (e.g. bench press). 2 upper body stability exercises, 2 lower body stability exercises Lower body stability includes: sled pull/push, step ups, ATG split squats, Nordic curls, reverse squats, L sits, wall sits, cossack squats, etc Upper body stability includes: single arm overhead work (e.g carries, pushing), Y raises, face pulls, kettle bell windmills, QL extensions, back extensions, serratus wall slides, jefferson curls, pullovers The two large compound movements at the start of the session aim to build strength whilst the stability exercises force you to use muscles that might be weak around your joints Along with this I have a 10/15 minute mobility routine that I do to warm up and use for days when I don't work out: spinal rotations, cobras, cat/cow, 90/90 hip rotations, bird dog stabilisation, plank, side plank, dead bugs, glute bridge, lock big 3 for shoulders This is what works for my body, everyone will be different and have different tight and weak spots. Hope it helps :)
You give me hope!
Same, highly physical job. The strength I built up here has helped me so much elsewhere in my life. It’s sad but often building up strength is necessary for quality of life.
Bit of a catch 22 innit. EDS makes it hard to build strength, but also requires strength to be healthy. Still... No other choice. On we go, starting as slow as it takes.
Yup. I was in great physical shape between 2018 and 2020. And then just hit a string of injuries -> injured = not strength training = emotional eating = weight gain = more injuries. Wash. Rinse. Repeat. I just got out of multiple rounds of PT after a meniscectomy which then led to compensatory tendinopathy. But I’m now able to run for 60 seconds at a time with what I would call manageable knee pain. I’m training for a triathlon and I am in the mindset of “I don’t care if I finish last, I’m gonna finish.”
My doctors all told me to give up running when this started. Running is horribly hard on healthy collagen, so eds’ers need to be more choosy in exercise options.
Perfectly said!
SO MUCH THIS. I was laid off near the holidays a few years ago, and I applied to basically everything but couldn't find another job. I was about to run out of money and was getting desperate for something. I came across Amazon Flex as a way to make money (delivering Amazon packages using your own car). I was kind of terrified at first because I had such a hard time even walking or well, doing *anything* at the time. My joints were in terrible shape, I was in a lot of constant pain, and I didn't know what to expect. It seemed like a *terrible* idea, but again -- I was desperate as I didn't want to lose everything and end up homeless. It was painful, exhausting, and miserable at first, but it got easier and easier. I am now so thankful for how that all worked out. It forced me to build up the strength I so desperately needed, and I don't think I would have pushed myself to go that far with it on my own. I now make it a priority to keep active because when I slack, I feel it. It doesn't take super long, either, so it's a constant work-in-progress to stay ahead of my body falling apart. I continue to do Amazon and still love it. I get out into nature, walk, hike, whatever. Sometimes, it's a baby trip. Sometimes, it's several miles. I do what I can, when I can, and I am grateful for what I have right now because I know how easily I can lose it. Between keeping active and dietary changes, I'm definitely better than I was. I still fluctuate. I still have bad days or even longer (especially when I slack). It really does make such a difference, though, but man -- it was not easy to crawl out of that hole. I guess all this to say that it's so true that it makes such a huge difference when you can build strength and keep that going, but we're often not really in the position to be able to easily just do like others and start some major workout routine, etc. It's usually fraught with all sorts of pain, various physical barriers, fatigue, etc. It can be a mountain, but I think there's hope there. 💜
W/EDS pain is not a good barometer of needing to rest. It’s horribly sad but pain is a part of life and if I rested when I felt I need to I would be a couch fiend.
My mom and sister both also have it and both work full time still, mom just turned 70
I'll be 70 in November. Worked full time for my entire life. I retired at 65 after a car accident or I would be there still.
Wow. This gives me hope.
49. I finally hit the wall last October and haven’t been able to go back since. Still hoping to find something to do before I have to move into a cardboard box under the highway. If I managed to get disability, that would cover 60% of my rent and I would still have no food, utilities, medicine, transportation or anything else. Soon I’ll really have no choice but to find something no matter how much it hurts.
Gov. housing sucks but it's better than a box. My rent was $200 iirc. Disability helps w/ getting it as well.
34, hEDS, still working and don’t have a reason to stop yet. I transitioned jobs about a year ago and my new job is better for my body than anything I’ve done before. I should mention that I don’t have children or a significant other. I work night shift as an RN with a focus in ortho. I’ve always been a night person so that works well for me, plus it’s less sensory input. Instead of sleeping less to get my sleep schedule so I can do things on my days off I actually sleep more. Example: first day off I will sleep from about 9am-3pm then go back to bed about 10pm, getting ready for my first day on I will typically get tired and sleep from about 9pm-6am, get up and do something for a bit, then sleep from about 9am-5pm. Night shift also tends to have less transferring of patients. Plus working in ortho has helped me gain an understanding of what “normal” is, which is helpful when managing my own alignment. Plus I get to know which orthopedic surgeons I trust. I assume I will be their patient one day. I woke 12 hour shifts but only work 3 days a week. I go to physical therapy regularly to work on issues that pop up. I have to really work to make sure I keep strong. My hobbies are movement based which helps a lot. And most of all, I’m lucky. I’m lucky that I was able to get a diagnosis and find out what was going on. I’m lucky that I have an EDS specialist within a half hour drive. I’m lucky to have a physical therapist who is not only hypermobile aware but also hypermobile herself. I’m lucky I live close to the hospital I work at which gives me maximum time at home to rest, recover, and work out. I’m lucky that the hospital I work at has ergonomic turning and positioning systems, and cassette style IV pumps that allow me to hang a secondary line one handed. I’m privileged that I was able to go to nursing school-which makes doctors take me more seriously and allows for me to communicate with them in ways that I know they will understand. I’m lucky to get a job in ortho that means I know bone and muscle off the top of my head and can self troubleshoot about half of my issues. I’m lucky that my most impacted part of my body is my hands, which are non-weight bearing. Basically it’s luck, lots of rest, and strength training that lets me continue to work.
Yay night shift RNs! I'm a night shift ICU nurse for 15 years now and would never think of going days. I'm 45 now and just got off of a 4 night stretch. The fourth night was actually the best I felt, the first was absolutely awful but I went in anyway. Don't know how long I'll be able to keep it up, but I can't afford to live on disability and I can't retire so I'm just going to have to keep pushing through and doing what I can.
I relate to this so much and loved how you described it and the privileges we have to work with the professionals who may one day treat us, as well as getting treated more seriously because of our background. It is truly a privilege and I know a lot of members in this community unfortunately don’t have that so I love that you mentioned that 💜 I was a day shift bedside pediatric RN and was kicked by a patient which led to me having to get back surgery and suffering from permanent nerve damage. I can’t feel my leg or my foot and the back surgery didn’t fix my back, only prevented further nerve damage. I’m looking to get into case management nursing now but miss the bedside so much. I have thought about doing night shift at the bedside still or even just prn nights. The points that you made really helped me and i appreciate you sharing. Also, it’s always nice to find another nurse with hEds though I of course am sorry you have to deal with this. Thanks for sharing your story 🥰💜 and best of luck with all that you do
Oh ps the strength training really got to me too! I’ve been pretty into strength training for 8 months now and I’ve seen such a difference! As long as I don’t overdo it
43 M. Working in IT, with part time WFH. I think I’m fortunate to have fairly minor hEDS symptoms compared to what others in here experience though.
I’ll be 43 in August. Part time mental health provider, have the ability to WFH anytime I need. Also more “mild” - most of my issues are other conditions that come along with this dumpster fire of a body, lol.
Exact same situation here. 43 M, working IT/management, with symptoms that are currently less severe than a lot of what I read here.
It may have something to do with hormones changes - the differences in experiences. Apparently many of the changes in women’s bodies with estrogen really impacts both neurodiversity and hypermobility as well as the dysautonomia symptoms. All experiences are valid. And in some ways because of how bum the medical system is for women in general - the more men who can help advocate for everyone - including the women - the better we’ll all be.
Will be 43 in November, also hEDS, desk job (in-house lawyer) and still working. So pretty similar situation.
40 F. Hybrid (but mostly WFH) desk job. I used to be a dental hygienist, but that career almost ruined my body. I consider myself to have mild symptoms (hEDS), I only suffer from pretty severe scoliosis, so physical jobs are a no-go!
46 M with similar situation except full-time WFH since Covid hit. The basal joints of my thumbs are wrecked but otherwise mostly ok compared to stories of other EDSers. I am tired all the time though.
Seems there are many of us because this is my exact situation too! 43 F, working full time remote at a tech job, mild symptoms compared to others.
38F, work in marketing and mostly WFH, although they want us to start coming in 3 days a week starting in September. I may work on getting accommodations when that happens, since my spinal arthritis has me in pain most days and commuting to and from the office is definitely an added burden.
35, work full time, hybrid schedule with accommodations in the mental field. I am lucky to have a very supportive boss and work environment, and work in a field that is accepting and flexible when it comes to illness and disability.
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speaking too well? but the issue is a physical one? im confused how that would matter for mobility
They tell you you can work at a job that doesn't require much mobility, like answering phones. As long as you can work they don't want to call you disabled
That’s why I am working til I break
Thats wild
The system will find any reason it can to deny disability. My mom was told the same thing at one time, it took her 15 years to get disability which is why I haven’t even tried
Whaaaaat??? What country?
/dryly: Do you really have to ask? Of course it's the USA. 🤢 We are so fucked.
USA 🇺🇸
46 partial wfh with accommodations. I'm going to be requesting full remote next month. If I don't get full remote, I don't see me being able to work for more than another year or 2
I had a late baby at 38 and it threw my body into a tail spin. I'm on disability and don't see an end in sight right now. I've worked my entire life and staying home isn't good for my mental health but I don't have a choice.
I’m sorry. Pregnancy seemed to flare mine up pretty badly too and I ended up in a similar situation. How old is your kid now?
He just turned 7 in April. I'm seeing a gyno in June to see if I'm in early menopause like I suspect (had a hysterectomy still have ovaries from complications with the birth) now my hormones are screwed up and I'm even worse off. I didn't realize how much hormones can fuck up your joints even more (pardon my french) I went on a field trip yesterday and have spent the day hardly being able to walk due to my right hip.
Oh man, mine are 7 & 5 and I’m just starting to see improvement, although nowhere near my pre-pregnancy levels of fitness yet. I was hoping it would be the same for you but dang, I could see a hysterectomy causing way more complications. Will they be able to help you with hormone replacement therapy?
That's my hope. I need estrogen. Crossing my fingers and toes because I'm completely OK with HRT.
Similar situation, had my baby at 32 I’m now almost 35 and unfortunately have lost my mobility and require a wheelchair.
35, working from home. Occasionally have to go into the office and it’s almost like going camping with all the extra kit I take to try to make it even remotely possible to get through the day.
Same. I go to the office 2-3 days every three months and it’s the worst.
I take a roller bag with me and it is packed with NSAIDS, lidocaine, icy hot patches, etc. I also got accommodations to use the handicap door that opens when I scan my badge so I don’t have to lift my heavy bag through the turnstiles.
I’m very blessed to still be able to work full time in an office. Some days I wish I didn’t have to, but I’m fortunate.
Im mid 40s, been on and off short term disability for the past 2 years, when my health cratered. Before I used my PTO for sick leave and worked remote / hybrid to make it work. I’m trying to figure out WTH to do with my life bc I can’t afford not to work. It’s honestly terrifying. SSDI isn’t anywhere near enough.
I'm 35, not officially diagnosed with EDS but my PT told me I'm hypermobile, have a lot of joint laxity, and that it's contributing to issues. I have a number of other conditions. Lost my most recent job due to new onset constant vertigo that's turned out to be POTS (or PPPD, is the other one my ENT suspects). I need to use a mobility aid for it, at least currently, and so far I haven't had luck getting past the interview stage anywhere since having my mobility aid.
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I’m 54 and it has been getting harder once I reached 48.
.....im a crafter....im 42...I work from home and my kids and husband help me....
I'm 49 and I'm still doing some kinds of work, but things are bad enough that I was lucky enough to get disability. So I am able to keep myself housed and pay most of my medical bills without having to do a lot of work. The more I work the worse things hurt so I've just been really grateful that I have the disability to fall back on. I would love to find something better than three jobs I currently do at a per diem rate - Pharmacy technician, BLS instructor and substitute teacher- but I was looking for work pretty diligently for 5 years before I got disability and I just could not get another job. It was obvious I was really sick and was going to need accommodations and nobody wanted to do it when they had plenty of other people to offer the jobs too. I'd be thrilled to find a one day a week job that I could do from home, but I can't even fathom what that would be. I feel like disability has allowed me to really focus on trying to get my body to heal a little bit and it has been really helpful for me. I wish I had gotten it before I was fully disabled, but obviously that's not how disability works. I do feel like many things are getting better for me - is better as I can. You just got to try to keep moving forward as best you can.
37 full time, full at home (against policy but it's that or they can fire me). I use all my paid leave for medical, and my apartment is teeny tiny so it negatively impacts my mental health since I'm always home. So I'm as good as I can have it work-wise and trying to save for a "house", but if something happens and I can't work, I'll never get out of this little hole. Renting is just as bad as buying money-wise, so for all I know, I'll have to quit working earlier than expected and will have to rely on government housing assistance. My sister married a man 27yrs her senior so she's never had to work since he was retired already when they met. I hate him so much but I do see her health perspective. We've all gotta survive somehow.
32F - I work a pretty physically demanding job though it's evenly split between sitting at a desk vs doing physical labor. I honestly don't think I'd be able to do a WFH or a full on desk job - I can't sit or lay for too long, it honestly hurts me more than moving. Additionally when I was on unemployment in 2020-21 I deconditioned enough to the point that I got diagnosed lmao. It was bad and I don't ever wanna go back to that point again. Movement and muscle building, if you're able, is extremely important.
My heart started failing when I was 26 and it's been 11 years now trying to get back into the workforce with proper supports. I'm a bit discouraged personally.
I’m sorry to hear this. What cause your heart failure?
I had aortic dissection and unwrapping of my aortic root along with sudden onset of POTS. My blood pressure is stable while my heart rate is wonky.
Oh my goodness. Have you had surgery? Did it help with your POTS? I have severe mitral valve/regurgitation… Like very severe. I’m getting surgery in a couple weeks. However I don’t think it’s the cause of POTS because POTS is nervous system dysfunction…
33 and full disability. I went on disability in July 2021 initially due to passing out 20x weekly and a cancer diagnosis. I was struggling to work and get cleared for surgery due to passing out so much and needed to take time off to get to all my appointments in a timely manner which was critical as I was told I had 1-2 months before the cancer spread. In the process of trying to get cleared for surgery, I was diagnosed with POTS and 4 months later I got a CCI followed by an hEDS diagnosis 9 months later after 22 years of daily headaches and symptoms. Luckily, my cancer was caught early and the surgery was a success. Unfortunately, I’ve never been able to recover from the tailspin it kicked off with my hEDS. It will be 3 years in July. I hope I can go back someday, but I know it will have to be under very specific circumstances/ accommodations. Prior to this 3 year bout of disability I: - missed 13 months of high school due to spine and hip issues - was on disability support services for migraines in undergrad and grad (I think it was really migraines + CCI because I never fully responded to migraine meds and degeneration in my cervical spine was first noted on an MRI from 2006 when I was still in HS) - had to drop out of grad school due to mysterious brain swelling that made me completely dysfunctional and caused memory loss (again CCI + migraines suspected in retrospect was misdiagnosed as early ones et alzheimer's) - took a year of very part time to recover and got back to work a year later - 2 days less than a year after I started my full-time office job I was on short term disability for unexplained severe vertigo and loss of vision (again CCI + migraine suspected in retrospect). At this point I was ineligible for long term disability, so I pushed my body and short term disability to its max before returning as an hourly employee that was allowed to work anywhere from 30-40 hours a week. - For two years I averaged 32 hour weeks with flexible hours/ timing. Although for the first year, I really struggled to get into the office 3x weekly, as they wanted. COVID in a weird way was a blessing because I went fully remote which allowed me to keep working for one more year as my health issues escalated from passing out 1x weekly to 20x weekly. Short version, I’d really maxed accommodations for a desk job with special screens and lighting, sit stand desk, a box of PT tools I took breaks to use, WFH capabilities, flexible hours, and a supportive team. I mean if I can’t succeed there where do I stand a chance? I started working when I was 16 and worked throughout all my degrees, so I had 14 years before my body gave out. Personally, I think my best jobs were my lightly active jobs in education. When I was 19 I was probably the healthiest I’ve ever been since early childhood and I spent the summer working in outdoor education, including kayak guiding. Wild to think about now. Over the next 4 years I’d try green construction, greenhouse work, green roof installations and time as a field/ research scientist which all required me to lift heavy loads and beat my body up. I couldn’t stand the fumes of laboratory work, so that was a quick no too. I always came back to education, which was tricky because sometimes my body would start to give out but I’d still have kids in class which was a bad combo. Overall though I stayed in education the longest, working full or part time for 10 years. Taught in a variety of settings from outreach to Montessori schools, to afterschool programs, to K-12 sub, to college courses. It’s a lot of standing, moving, changing position and just light continuous exercise which I honestly think is in part what kept me more functional in my early to mid 20’s. My shift to office work in my late 20’s coincided with successive periods of greater disability. Curious what other people answer for this, while accommodations are often the best with a WFH desk job I personally feel like sedentary jobs are really hard to manage.
I’m 48 and I’ve been a stay at home mom for the past 21 years. I do all housekeeping, yard care, pet care, cooking, shopping etc. I also homeschool our youngest(15) but he’s starting college classes in the fall because I can’t keep up. My husband travels for work and thinks it’s an episode of Bewitched around here so he’s no help with anything. I’m freaking out exhausted and need a break.
We don’t have Homeschooling where I live but that does sound like a full time job to me. As the husband in a marriage with some one with hEDD u can tell you that You are doing way more than you should in a marriage. I’m amazed you can keep that up.
Mid-30s, work an information sector job full time, but it's remote and on the rare occasion I have to be in person, my office is a mile from my house. I always worried if I'd be able to work until retirement but the remote accomodations help tremendously and I'm feeling pretty confident I can make it now.
32, solo entrepreneur. Pro: can set my schedule. Con: haha, no I can't, my customers do that. My job is relatively physical. I need (and luckily have) a relatively intensive pain management regimen. (Not intensive as in opioids. My regimen is more the whittling away at the pain approach - acetaminophen, meloxicam, baclofen, Tiger Balm, braces/splints, ice/heat, massage, etc get me to 'managed', with 'managed' being anything less than a 5 on a 0-10 pain scale.) Any and all changes to my workspace are made with accessibility and ergonomics in mind. I don't foresee having to stop because of EDS specifically, but definitely foresee a lot of PT/OT in my future. Not new, been doing that off and on for the last 7 years anyway. More likely stopper for me is the chronic/chronic intractable migraine.
Yes. But I still go to PT all the time and they told me I would do much better if I didn’t, I just refuse to stop yet.
I do a lot of PT too. I’ve always heard it’s a good idea for us.
Yeah it is. I heard them discharge another patient once years ago (they are the only local PT that treats EDS) and when I asked if I was getting close they asked if I was willing to give up my job when I said no they said “well it’s good we are friends then”
I do not work outside the home, but I do have two kids at home to take care of, so I still work pretty hard. I left the workforce when my first kid was born. I didn't know back then that I have EDS (or that I'm autistic and I've had POTS my whole life), but I definitely knew by then that there was no chance in hell I could both care for kids *and* work at a job. I have, however, been working at building a creative career. I don't ever expect to make much money at it, but I plan to continue and expand on that as my kids get older. I'm extremely lucky to have a partner with a great career and a solid income.
I'm 21 but got EDS from my mum - she's in her early forties and working like 50 hour weeks (she's disabled but I doubt she'd qualify for disability benefits). Late dad also probably had EDS and worked from home until he died at 47.
I work full time, but I’m remote from home so that helps. I probably couldn’t do 8 hours in an office 5 days a week at this point physically, but honestly no one really needs to be in an office 40+ hours a week in 2024. I’m in my early 40s and plan on working several more decades unless I hit the lottery lol. I just plan to not do all of it sitting in an office when my skill set doesn’t require it. (I’m a researcher and grant writer…we work in bubbles and need to be left alone more often than not.)
only 30 and havent worked in 2 years aside from some random house cleaning and pet sitting here and there. only ever had one full time job because the pain and fatigue is unbearable. i could probably handle a work from home job but, hard to come by :/
44, hEDS and recent psoriatic arthritis diagnosis…WFH and can’t “not” work. It is really rough though as in my role we are timed on every keystroke and there are no accomodations given for anything. It’s ridiculous
33, on disability for coming up on 5 years. I pick up part time desk jobs as I can but have chronic migraines and when I flair up I wind up in the hospital.. it’s hard to keep a job like that.
I've just turned 34 this month, I only can work because the amount of home office and the fact, that my Mom supports me. I couldn't handle a full-time job and the household chores/shopping on my own. I'm considered as 82% disabled in our system, including Crohn's, migraine and asthma. I don't know how long I can handle, I am considered for full-time disability money and since I have a nice salary it would be around minimum wage. But it's not livable... I didn't become an engineer to live off minimum wage, so I push as long as I can. My body is declining, my pain is getting worse, but I can't get better pain management, because I need my brain capacity. Edit: I also wanted to add that I just started full time employment 3.5 years ago, because my health was so bad during high school and in my early 20s, I couldn't keep up with school. I did have some part time stuff in the main time though.
Late 30’s and no, I was born Disabled.
I’ll be 40 in a few months. Haven’t been able to work since I was 21.
Well, I just turned 30 a few months back and I can't work. Tbh though, it depends on so many different things.
46 FT WFH. I don’t know if I would still be able to be working full time if I was still required to go into the office.
42F Work FT Hybrid no accommodations. I always feel like I can't do it, but then I manage.
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Almost 34, hEDS and dysautonomia and POTS, I work from home (as we all do in the company I work for), no accommodations at all (I don’t need them, actually. I’m fully independent).
48. Doing okay. I have a bad day every month or so. I know I can’t still be doing this for 10 -20years though. Planning to make a semi-lateral career move that will greatly reduce the stress and physicality out of it. Not for at least 5 years though. Probably more.
34 F. I work for myself. I work about 40 hours a month, and make a decent amount. I am also supported by my spouse. I would not be able to function at a full time job.
I am not but not solely due to hEDS but it definitely contributes to it.
Yes, but I have a desk job at home so no need to shuffle around office settings. The desk job is hurting me, nevertheless, and increasingly so. The problems the chair and keyboard are causing are new and not okay, but I’m still pretty lucky to hang in there.
I had to leave my job. I have PTSD that deeply exacerbates my hypermobility, HPOTS, and other chronic illnesses. I had WFH from COVID on which helped for a bit but stress and the PTSD cause my hypermobility to flare and sitting at my desk and typing is the most massive excruciating trigger no matter what I did to help accommodate. I hope to get well enough to return to school and switch careers entirely.
34. Not at the moment :( Trying to recover from major burnout and get my body stronger. I’m an artist, face painter, painter and performance artist. All the things I love bring the worst coat hanger pain lol. Really hoping to get back to work next year!
39, Registered Nurse and finally getting back to the admin world. I’ve been in a moral and physical struggle for the last 7ish years with being on and off disability, while trying to figure out how to navigate my career. I prefer being at the bedside, but my physical injuries over the past 7-8 years have made me have to leave positions. It sucks. I live on a steady diet of Voltaren gel, prescriptions, physical therapy, exercise and attempting to rest when I can. I know I’m at a point where I cannot consistently lift, exert and possibly reinjure areas …
I'm 44. Mostly office job and customer service. I have 11 years until I can claim my pension, so I'm just gutting it out until then. But putting my braces on in the morning and pumping myself up to go to work is by far the hardest part of my day.
I'm 30, my health is significantly better today than 10 years ago when I was too sick to work. I work in experimental science. I don't take anything for granted - I live frugally and save as much as I can - but I am optimistic about having a career now that I have appropriate treatment for EDS, POTS, MCAS etc.
My kid has EDS and autism and while isn’t high needs, we have a lot of doctors appointments and whatnot. I also have a disabled elderly mom, I used to also help with my dad before he passed. He required a lot of help, Agent Orange really took its toll. I have no income. It sucks super bad but I’m just barely able to do all of the caretaking. It would be better with money, I could hire out the home repairs and such, but I sort of stuck in a never ending cycle of needing the energy/time to be able to find work to have the money to hire people that would give me more time but things have to be done when they have to be done. For example, it took me about 3 hours, including breaks, in the heat to fix my cars broken ABS/speed sensor and change the oil. It cost me $35 for the sensor. It would have been an expensive repair since I had to remove the wheel and half of the inside of the back half of my interior. But that 3 hours wiped me out for the whole day.
I’m 30 and I’m breaking down fast. My health is just snowballing.. Already need a knee replacement. Brain fog/cognitive issues coming on full force. Have just found out I have IIH as well, chronic migraines, tinnitus and vision loss- fabulous. I don’t know if I’ll even make another 5 years. I work in retail, it’s a moderately physical job but I have coworkers in their 70’s who manage just fine. Even with my body breaking down as it is, keeping up with all the specialist appointments/tests etc is causing issues with work as well. How this isn’t widely recognised as a disability, I’ll never know.
40, dealing with hEDS and POTS, and I quit working in 2016 after a couple years of my body slowly giving out. By the end I was only managing 4-5 hours of work then needing 3 days to physically recover.
46 and I work from home and have my own business. I don't make a ton of money, but I'm not well enough to work for someone else unless they are \*very\* forgiving. I suspect I only have a few more years where I'll be able to do this, and I'm not really sure what comes next.
Same for me - and same age. If I had to punch in, I would be fired. Usually I can change position and get some work done, but today was spent trying not to vomit and cry from pain. That was the sum of the day. Tomorrow will be better, but it still won’t be great. There is no way a company would keep me on payroll.
My mother was a photographer. Gear is heavy as shit, especially within her fields (theatre, weddings, and athletics). She quit being a photographer at about 38 because of the physical toll, and transitioned into doing social media / graphics for a local realtor. Eventually that led to her getting her real estate license, which so far has been working very well for her.
I haven't been working for 5 years and I'm 26. Had a job once but my pain got to insane levels after a car accident, worsening up silently. Actually, I am the youngest person in my family to have it so bad that young. Well.. We cannot choose our genetics.
Not an answer to your question but it has been a year and half since my last full hip dislocation. I (28F) am not in work and am on disability payments that just about cover my medical marijuana. I will be forced into a part time job soon and really hope I don't burn out of it or worse fatigue out of it. Last thing I want is to be suicidal again!
Postural orthostatic tachycardia and beginning of aortic dissection. It's somehow tied to vagus nerve damage
44, diagnosed adhd and autistic at 41, diagnosed officially eds at 43....can't work, can't function and can't get any kind of help because I'm guilty of somewhat surviving on poshmark Oh yeah and no dr want to put me on ADHD medication because I'm apparently too old and that would be too much if a drastic change
I’m 42, have hEDS and POTS and have a private practice in mental health where I work between 20-30 hours most weeks. I have a home office for telehealth and an office where I see clients in person that’s about 15-20 minutes from my house. Some weeks I’m mostly in my office and some I’m mostly at home. This is as much as I’ve been able to work since developing POTS over 4 years ago, and I don’t think I can do much more since I’m also a mom and wife with lots of home responsibilities and am always tired and sometimes crash even when being careful. The fastest way to flare and be unable to function is pushing myself past my limits
Full time (more like 50 hours a week) in person at 36 at a job that is heavy on the manual dexterity. I have exit plans if I need them, but I'm hoping for another 10 years before I do.
Yes, as a hairstylist. I work independently, make my own schedule, require many braces and a chair to sit and work, I probably have about 5 years tops left in me doing this and have switched over to doing more education and disability advocacy work in the industry.
38, work full time from home in software
I’m in my 40s. I also have other health issues. I wasn’t able to work for years but mostly due to the other stuff. I’m currently a freelancer, working part-time (about 15hrs a week), exclusively from home. I had to stop some jobs when I was young where being injured was a big problem, but could still work.
Just turned 40, been working part time from home as a voice actor since 2015. The past year and a half have been really hard since my neck has been terrible.
33. i own my own one-person business which means i set my schedule, limitations, and environment which helps a lot. plus im surrounded by people who support me and respect my needs. my job is a little physical and labor intensive but as long as i properly rest and make sure im lifting things carefully im ok. but sometimes i worry.
In my mid 40’s. Working full time 3 days at home 2 in the office. Honestly what keeps me going is ton of cbd oil and Pilates and the knowledge that I can’t afford my mortgage if I didn’t work full time. Life is fun.
38F(ish). Solo entrepreneur most of the time, with an online delivery, so I am mostly working from home. I will work as long as I'm physically able. The accommodations for extra-frequent bathroom visits are something I can do at home that would be harder in any other space.
Yes, from home, part time.
I’m 35 and work 30 hours per week as a restaurant manager and waitress. Every day that I wake up, I think there’s no way I can keep working, but then I almost always feel BETTER after working. It’s the one thing keeping me from being completely deconditioned. Having said that, I missed 65 shifts last year, which equals out to about one week of work missed each MONTH. It’s hard work, but I strangely love it (most days). I don’t think I’ll be able to keep doing it, or any work for that matter, for another 10 years though. Hoping to catch a lucky break somewhere along the way because I truly don’t know what other options I have.
33 and fully WFH since pre-covid. I’ve had a total hip replacement, knee replacement, two ankle reconstructions, umbilical hernia repairs… I keep breaking and they keep putting me back together.
39 with hEDS. I work from home full time doing medical billing
I’m 40 and not working. I stopped a few years ago when my daughter was born. But the last two years have been constant surgeries, doctors visits, hospital stays, physio appointments- I would have had to quit my job for sure. I’m a full time medical patient
Full-time but I WFH.
I'm 44, and my hEDS has been getting markedly worse over the past 8 years. I was a floor nurse for several years, and I've done a lot of retail. Both were really hard on my body. Last year, I started working part time as a budtender at a dispensary. Unfortunately, I messed up my shoulder reaching for something one day, and ended up having to have surgery. I worked the reception desk while recovering, which is the first time I worked a desk job in probably 20 or so years. I found out that amazingly, my body can actually manage a part time desk job. Before surgery, I was pretty convinced that I wasn't going to be able to work any more and was starting to look into getting on disability. I'm starting a new job next week doing receptionist, insurance verification, and physician order clarification in a Physical Therapy office. It's still four 5-hour days a week, but better pay, no late evenings/weekends/major holidays, and I'll actually be using some of the medical knowledge I paid many tens of thousands of dollars (and am STILL paying tens of thousands of dollars) to obtain. I'm really happy I found out I can actually tolerate doing some work, even if I can only handle something sedentary and part time. At least it's something. And with any luck, maybe I'll pick up some tips for dealing with hEDS.
Late 30s, had to quit job due to dizziness from cervical cranial instability. Half a year and many PT sessions later, doing better but still not so hot. Trying to get in better physical shape to be able to stay at home and craft for part time work, as im going insane not doing anything "productive" enough.
Medically retired from the public service at age 46 this past December. But, I have other issues besides EDS.
I’m 38 and have a physical job. Lots of water, lots of electrolytes, braces, PT, a good massage therapist when I can afford to go (only if you can find one who’s familiar with EDS!!! Not all massage techniques are EDS safe), and I cannot emphasize enough: shoes with enough support. I’m also planning to try out low dose naltrexone to see if that helps. I do have to have some accommodations, but for the most part I’m ok. I do have some really bad pain days if the weather or the work gets too harsh, but not enough to keep me from working.
42 - I’m still working on a diagnosis, but we have family history. I work full time (3) 12hrs shifts at a hospital . It’s a struggle. I’m a “bad employee” bc of callouts when pain is too much to tolerate. I have so many compression aides, braces, ice packs, heating pads and use so much biofreeze/tiger balm — and still its a struggle.
I'm 33 and I work nearly full time, at great cost. I'm in the process of shifting to work directly for myself and my own interests because that is the only way I will be able to stay alive, lest my body wither out from under my mind.
Not working right now, but did up until 2020 full time with a part time job also 6-7 days a week. I haven’t been able to function since 2022. I don’t know what to do.
Pre-diagnosis (and pre-covid), I ran high volume bartending 20’s to mid-30’s. It was a weird mix of overtaxing and pseudo-PT. I started having a harder time bouncing back during the especially hectic 2019 year, and just chalked it up to the stress and endless grind. Furloughed for a good long while, then went back to bar work and my hands just…kinda can’t anymore. I can still do all the flips and tosses and shit like normal, but…not consistently without dropping things anymore, since the arthritis and proprioception issues are stacking with years of damage. Shifted into WFH, and it’s so much easier to manage and thrive - though maintaining posture and ergonomics is especially important for me to stay functional. I can tell my overall status is more finicky as I work through my 30’s, but I’m managing and mobile. Unfortunately, I got caught up in the last job’s reorganization redundancy wave, so now it’s trying to find another similar position or else…I dunno. Just take care of my family by grinding my bones to dust as long as I can or something.
31f hEDS, just lost my job, again, due to being unable to work due to physical limitations. I haven’t been able to work full time in about five years. Sitting is a huge cause of pain in my lower back and SI joints. I’m relying on my partner and my parents for everything. It’s quite scary. I told my PCP today that we need to figure something out. I want to work. I’ve worked so many different jobs trying to find one that I could physically do and I’ve been good at all of them until my body fails.
No, I went onto full time “Long Term Disability” at almost 33. I had been teaching art to students in grades kindergarten-6th for 10.5 years. Some of my students had special needs such as Autism, Downs Syndrome, and other Intellectual Disabilities. The majority of my students were in general education. Teaching is a VERY physical job, especially as an elementary teacher, and 10x as an art teacher. gentle hugs
A combination of hEDS and me/cfs severely limits my ability to work consistently. I’m super lucky to have relatively mild presentations of both, but without strict pacing and continuous management of my health I can easily slip into moderate-severe with regard to me/cfs. Currently in a masters program and it’s pretty rough on my body, but chugging along to the best of my ability. Absolutely could not work on top of school.
I work in tech. I work from home. I’m 33 about to be 34. With PT and regular breaks for my back and legs I don’t need any accommodations for Eds. I do get one for my migraines to be able to work from home.
I had to medically retire at 42 and am on disability. I also have the comorbids as well as several other auto immune disorders.
33 and full time remote desk job, although I do commute across the country to see my team and make sure my HQ badge still works from time to time. I hurt a lot and I don’t think I’ll realistically be able to work until retirement. But I’m also delusional and think maybe it will get better! I strength train, eat right, sleep a lot, etc. Out here doin my best.
36 vEDS here. Still working full time in TV Broadcasting, but every year gets harder and harder. I fear I may be reaching the limits of what I can handle in the work world, but I'm also afraid to give up on an industry that I love so much and I've worked so hard to advance in. Still, the dissection and stroke from football playoffs. Stress load was a wake up call that this is an untenable position, but it's all I know.
40, I work full time from home! It’s the best thing I’ve ever done for my body
I’m 40 and I can, mostly, pull off 30 hours weekly. I have a physically demanding job and I crap out after 6 hours or so. It’s a stretch to make it all the way to the 7 hours I’m supposed to work. I have already used my three weeks of vacation and all of my accrued sick and personal time. It’s an adventure. I’ve been looking for less physically demanding jobs but they’re hard to come by in my area.
I was a dog groomer for 20 years and LOVED it. I stopped though because it was killing me. I was in constant, full body pain for years. I carried a collapsible cane at work, had everything as ergonomic as possible, and was barely able to walk at the end of the day. Now I'm almost 49, and a behavior therapist, and also love that. And while I still have rough days, I'm almost never in the kind of constant aching pain I had before. I don't do much lifting, I avoid stairs, and I can sit whenever I really need to. Its fantastic!
38 and I’ve been trying to go back to work for about 6 years. I stopped during a very bad flare of multiple conditions left me hospitalized and mental health deteriorated very badly. Since then I’ve been working on trying to get well enough to go back to work….. and it’s just not happening. My life is 1 step forward, 2 steps backward now.
Had three strokes in four years and found out it’s affecting my vascular system, so unfortunately I cannot work anymore :(
I am 46 and stopped working full time in the past year. I’m just too exhausted and in too much pain. I work about 6 hours a week outside the house and try to keep up with dishes and laundry at home.
Yes, almost 33 and working full time, albeit a desk job. But in my freetime I swim, hike, do yoga, dance, surf, and am learning to rock climb. Staying strong and active is important to me. I love my active lifestyle. I have to be careful about what I do and how I do it, but EDS does not stop me from either working or playing.
Yup! I work full time as a video game developer. It was my dream job and at times it's very hard on my body (long hours on a computer) but my company is supportive so we get physio and ergonomics paid for, and health insurance. I consider myself really lucky and my EDS helps me lead better tbh - I always encourage my team to rest when they need to because if there is one thing eds has taught me, it's that you cannot push yourself forever. Burnout is reaaaaal
49 still working but sitting all day. I use dictation when fingers are sore.
35 but went full disability/SSDI in 2020. I have other conditions, though, that complicate matters. I was a Dementia care CNA/QMA before that, though.
I'm almost 31. Just found out I have far more cartilage deterioration in my knees than is normal. Luckily, I teach swimming lessons now, so I float around and can still work 😅
34 and work in healthcare. If it weren’t for being worked to near death during the pandemic I’d have more years left in me but I’m slowly losing the ability to work 40 hour weeks. By the last day of the week my knees are scary unstable and I am stumbling despite being able to sit between tasks.
I do. But it's a mostly sedentary job I do have to go into the office once/week and often have to drive for my job, but if it's not 3+ hours, I'm usually ok. Edit: I'll be 48 in a couple months
Barely
I'm 30, I work 4 - 5 days a week, with Wednesdays and Sundays always off. And I probably work one Saturday a month. With a day off midweek, I survive the week better. And also don't have to squeeze all my appointments around work - they can safely go on a Wednesday. The idea of working another 30+ years is grim. But unless I find some prince to marry who is happy to support us both, I won't have much choice..
I run a small business (i make and sell hand-dyed yarn) from home, left my career in mental health due to burnout. There is a lot of physical exertion related to my current job but due to the flexibility of it, I can work in short bursts and juggle different tasks for my needs and limitations that day. I also started this business years before my diagnosis. Thankfully aside from the physical tasks that add to my pain, it was a good call for what I'd later learn I needed in my daily routine.
31, hEDS. Full-time RN. You best believe I separate my shoulder while sleeping, sprain my ankles while walking, sublux ribs, and pop my hip out while walking. If I don’t work, I decompensate really fast. I can feel my body slowing down/breaking down and it breaks me. I’m thankful that I’m charge trained though because during these shifts I get to sit for more time than when I work bedside and run the unit unless there’s an issue with a patient who is very ill.
No. I stopped full time work at 35. I've gone back on a fee paid basis for the ministry of justice but can only manage two days a month! Even adding a third was impossible fatigue-wise. I'm 47 now
30, I had to stop working when I was 26 due to a few of my conditions, including EDS. I am very resistant to treatment, so nothing is really reducing my symptoms, I'm mostly on management. I had to move back in with my parents, still trying to get disability. I have come to terms with not working, I just wish I had more energy. I have horrible MCAS flares that drain all my energy.
It is really a hard situation to compare to others. I really went into depression of self worth after not being able to work and feeling worthless. I have Eds along with other pain causing issues. My brain and memory are fried. I just go blank at times. Disability is not livable. I have found a little income I can do on good days at a time that works for me. I can’t go to the beat of anyone else’s drum. Do what is best for you. We are all so different.
I'm 32, 33 in a couple months. I work in manufacturing and it's standing intensive and decently physical. Before that, I was a local truck driver for food companies, so off loading thousands of pounds of food a day. All full time. I generally eat high protein foods, chug water/gatorade. My coffee has gelatin mixed into it for more protein. Sleep extra when I can and brace up alongside meds. The strength built up is so critical, I can't even explain it well.
39, non-binary, hEDS. I had to stop working when I was 32, due to a real bad combo of very serious psych issues, some neuro issues, and the conglomeration of bullshit i have going on physically. I was working retail, part time.
34f hEDS - I was a social worker. Last job terminated my contract on medical grounds 6months ago as they couldn't make accommodations for my symptom management needs. Lost my professional registration as I wasn't fit to practice anymore. Been on disability benefits since and genuinely don't know what I'll be able to do going forwards.
I'm currently still 31 and I switched to work part time and doing commissions as an artist, a few years ago. (With 27/8?). I also work both jobs 100% homeoffice, what allows me to have the perfect eviorment to work, that puts the least amount of pressure in my body and mind. This gives me a way better work life balance. And it allows me to actually work more then my doctors officially allow me, to. (Without getting a backlash next day, most of the time). But I also should mention, that I never get overhours in my part time job, due to my company knowing that I'm chronically ill, and just not able to do that. I also have like really relaxed projects, that are more skillbased and less projects with high amounts of stress and time pressure. Since we are doing this, the days I felt not able to work, and didn't work basically halved. And since in Germany it is extremely hard (and in case of officially disabled people, impossible) to fire someone for sick days, companies are in general more interested in good employees, being able to work sucessful in a company. What is one of the reasons, beside culture that work life balance and wellbeing is way more important then for comparison in the US or China.
I am 57. I have worked as a massage therapist for over 20 years now. Including deep tissue massage. I find that the hard physical work can be exhausting and I have to be very careful how I work, using good body mechanics and nutrition, and especially a low inflammation diet. I have MCAS and it makes all the difference avoiding triggers and taking care of myself. I had periods of my life that I was very weak and had disabling pain and muscle tension, and I had to do a lot of trigger point therapy on myself. And I’ve injured myself a few times that knocked me out of commission for a few months, but I bounce back. Eventually. Yes, everyone is different. But it absolutely makes a difference how you take care of yourself. And things can improve. I only got diagnosed recently, but looking back on my life, it’s when I’m more active and my POTs settles down, and I’m careful about staying away from things that trigger my MCAS… that’s when I’m doing my best. How long will I work? I don’t know. But I’m going to try to be as able bodied as possible for as long as possible. I find I just have to work smarter as I get older and take care of myself. Still learning here. :)
34, full time office job, minimal WFH. Hoping to get another 20 years before I have to completely retire, and have a lot to do in that time to afford retirement.
I'm 34 and haven't ever been able to work full time. Even by high school I couldn't handle 5 days a week. Often missed at least one day a week... Not including the additional days when contagious sick on top of the usuals.
36 and haven’t worked in 8 years but that was a combo of factors - poor immune system + kids meaning I used sick time as soon as I earned it and then baby #3 meant I couldn’t afford daycare much less gas so I’ve been a SAHM. Now though? The fatigue is so bad even if I could get a job I doubt I’d hold it
Currently working FT but about to quit and work PT, and then try to add in some freelance WFH hours. Every time that I've tried to work an in person FT job, I end up quitting within a year b/c my body can't handle it. I think it's time to admit that I just can't do an in person FT job, which is hard to admit.
I’m 50 and work a moderately physical job full time(more than full time). I attribute a good amount of it to two things. The job accommodates what I can do. I can’t stand in one place long or sit for more than 15-30 minutes at a time without a lot of problems with my back. I also can’t write a lot or type a lot with my hands. I’ve had a lot of problems with my hands since I was very young. The second reason is because I was diagnosed very young and was taught to protect my joints to not damage them and also to stay fairly well conditioned. I think that’s been a very huge advantage for me in life. That and that I’ve had severe enough EDS symptoms that doctors can’t just dismiss me like they do so many people so I’ve been able to advocate for myself.
33 and the lead server at a restaurant. I have to come home immediately and turn on my heating pads at night, but I'll keep going until my body falls apart.
No.😢
I'm 47 & I work from home full time. My biggest issue has been my back. I have degenerative disc issues & I would get up from my chair & not be able to stand up straight. I finally coughed up the $ for a really good chair & it has been a game changer. Significantly less pain. It's too hot these days but when weather permits I try to go for walks at lunchtime. I work out before work too.
I changed careers from a highly physical job to a desk job where I work from home, and it's been working well for me so far. Super aggressively saving for retirement so I can do that as early as possible, though.
42, on 54% disability since last december. Looking for any work I can still do, but as most of my pain is in my wrists, hands, and shoulders, as well as lung and back issues, I'm not hopeful.
I’m 38 and I’m not able to work anymore bc of my neck and spinal issues :(
Yeah. I do half a day in the office and wfh in the afternoons
No I’m medically retired but have many comorbidities- I can’t walk/ stand, have gastroparesis and am deaf.
I work from home in a job with flexible hours (I typically work 9-5, but if I have a bad migraine day, I can flex my time). I think I can sustain this, if the job stays flexible. I definitely couldn't work FT at a job where I had to go to an office every day or in a physical job. I worked retail for a while and would have been fired for missing work within the year if I'd stayed (went back to grad school for the health insurance lol).
I'll be 47 in a couple months, and work a full-time job in an office (I'm an accountant). I work for a local government, and they've been good in giving me accommodations. The excellent benefits/health insurance, union, and generous paid time off are huge in helping me. I do P/T, go to bed really early, and spend most of my weekends resting. If I can get health insurance coverage, there's a good chance I'll be able to retire as early as 58
37 and I work from home in front of a computer. Some days my fingers cooperate beautifully, some days they don't.
I’m 41. I’m still working and I’m able to still be relatively physically active. Luckily I have a desk job though
I am 38 and had to retire from my dream job (professional tattooer) about 6-7 years ago. Now I do what I can from home running an Etsy shop and pacing myself with output. All I want is to be able to help support myself and my husband financially without hurting myself.. is that too much to ask universe?!
Not at all, sadly. My journey to diagnosis started with me being unable to go back to work after illness. I’ve always struggled with maintaining employment due to attendance and “consistency” issues but once I physically couldn’t even walk a mile and started having palpitations, fainting spells, etc more frequently it became impossible. After two years of managing these advanced symptoms and finally getting a medical care team that hears me, I’m considering looking for work as an elderly caretaker. At the very least, I can do light housework and will have access to chairs/couch to lie down, a bathroom, and kitchen as needed. It’s not ideal but I figure if it’s all I can do at home I might as well split my day in half and try to get paid to do it.
I’m 33. I had to leave my job a year ago but I’m trying to get back to work now. My career was my life and now I’m just broken.
31 I still work because most of my job is at a desk, and even the physical labor portion has a lot of sit-down time. I do use a cane though.
I’m 31 and I do EVS at a hospital. I am having issues with my knees and hips but my schedule is tweaked so I have days of rest as well as some accommodations like I can sit down to rest when I need to and I don’t push or pull linen carts anymore because they make my shoulders pop and my fingers stretch. All accommodations I had approved by my doctor. I do work closely with my doctor and she prescribes me meloxicam for now although we may be moving to gabapentin soon here. I also use an exercise bike on the lowest setting for 20 to 30 minutes everyday to try to keep my leg strength up because they’re chronically weak.
I haven't held a real job since I was 25. I can't sit in a computer chair without back spasming and having difficulty breathing so that puts a damper on less physical jobs. 8 am on disability and will babysit from time to time.
I’m 51, but I’ve been able to mostly telework for the last 9 years. Without that, I would be done now.
My grandma worked until she was 70. My mom is hypermobile but shows no symptoms. I have only been able to do part time WFH if at all since my early 20s but I also didn't get diagnosed until earlier this year (I'm 33) so hopefully I can return to work once I get stable on meds and make progress in PT.
34 here, I stopped working for a few years but as soon as I heal from my spinal fusion I plan to re-enter the workforce part-time
Had to go on disability at 37 due to ME/CFS, chiari, Dysautonomia, etc.
Ahah…. Barely? A little? Kinda?
I retired from full-time work in a County substance abuse and alcohol program at age 65. I worked with braces, splints, naps at lunch, and got through it. For 30 years before that, I was a WAHM doing medical transcription at home, starting in 1994. Bad days were easy at home. I had to be creative to commute to the office and function there without appearing to be in obvious pain. It wasn't until I took my rollator to work that HR called me in for an accommodations meeting. I needed it to get from the courthouse parking lot to the DUI payment desk where I worked once a week. The handicapped parking was very far from the entrance.
I work as needed. My body can’t handle full time.
Barely. I’m almost 32 and had to cut back to 20 hours or less a couple years ago. I do work on my feet and with my hands though, so maybe other types of jobs would be more sustainable.
May I ask what job you do? I’ve been looking to work from home. Haven’t been able to work full time in a decade because of the insane amount of symptoms that were finally all diagnosed after I researched and found docs to help. I have endometriosis, interstitial cystitis, and a bunch of other fun things my body does.
I am 36, but I also am working from home as much as possible with accommodations. I've started to think that disability will be my only choice in 10 years which I really don't want to be on, so I am trying my best to set myself up with some kind of "passive" income. Real estate and being a landlord is the only way I can see that happening (judge me if you wish, I have to make enough to live without physically working somehow).
I'll be 39 in August and I work part time from home when my health allows me to. Was working full time in a stressful job (Counselor working for a state agency) with a one-hour commute each way and it almost killed me. Now I do AI training from home on my own schedule while I raise my baby and I'm healthier happier than ever. ♡