update: I’m afraid people at work will think I’m being abused

It’s a special “where are you now?” season at Ask a Manager and I’m running updates from people who had their letters here answered in the past.

Remember the naturally clumsy letter-writer who was afraid people at work would think she was being abused (#2 at the link)? Here’s the update.

Basically, my clumsiness has been a running joke for years. I’ve gotten very good at laughing it off, and I managed to combine that with the advice from you and your readers on making light of rope burn on my throat or the ridiculous broken ankle or any of the other myriad of ways I’ve gotten banged up in the last six months alone. I read all the comments back in October and got a great chuckle out of a lot of them. Some of them suggested that there might be more at play than just clumsiness, and I thanked them but laughed that off too.

Then in February, I broke my collarbone and suddenly it wasn’t funny anymore. It was a really serious and upsetting injury and I’m going to be dealing with the fallout for a long time; I needed surgery to have nine screws and a metal plate piece it back together and I’m in for weeks of PT now that I’m out of a sling. I remember sitting in the ER wondering how the hell this had happened AGAIN and not being able to shake the thought of the comments that there might be more to it.

The past few months have been kind of a blur that included getting a job offer two hours before finding out I’d need surgery, but things have settled, I love my new job, and as of three weeks ago I’m on my company’s insurance! I have much better access to specialists now, and decided to pursue a few appointments.

Without getting too much into the details, we have reason to believe my spatial processing is messed up which would explain why I’m constantly tripping on stairs, running into walls, falling off porches, etc. We’re still in the very early stages of figuring out what the problem is and how to mitigate it, but it’s in progress, and that’s a pretty big deal. I’m also going to be starting yoga once I’m cleared to do so, which will hopefully help me work on my balance.

My new job has given me nothing but support since day one, so I really lucked out there. It’s for sure been chaotic as everything settles into something a little more stable, but there’s definitely a happy ending to this one. Thanks again to you and all your readers, those comments were the push I needed!

Update to the update:

I finally started physical therapy, which is brutal but definitely necessary, and I also started a new medication that seems to be helping! It’s only been a few weeks but I have noticed a difference. Multiple doctors have supported yoga (a suggestion at least one commenter made) once I’m physically up to it, but that’s still probably three months away at best.

My new job continues to be incredible with the flexibility for all my appointments, sick time that I had access to right away, and two weeks ago I was put on a management track! It’ll come with a huge raise and a lot of really interesting responsibilities once the training is done and I’m really excited.

My start date had been pushed back three weeks due to the surgery but it was definitely worth the wait. I may not have applied had I not realized that retail gigs with no benefits were less than ideal for someone who had three porch-related ER visits in a six-month period, so in the end I guess all’s well that ends well.

{ 120 comments… read them below }

  1. Teekanne aus Schokolade*

    Wow, OP! Wishing you well on your journey! I believe it will inspire others who also write things off to “clumsiness” when it could be something mitigated by medication for example. Thank you for sharing these updates with us!

  2. C in the Hood*

    So good to hear! Once you are able to do yoga, you’ll find that it not only improves balance, but helps with body awareness as well. Good luck on your healing process!

    1. OP*

      That’s what I’ve heard! It’s for sure going to be beneficial all around. There’s a yoga studio a block from my office that comes highly recommended so I’m thinking that’ll be my first stop.

      1. Le Sigh*

        I’ve loved yoga for balance and body awareness, but also strength! I didn’t realize just how much it would help with strength (which also helps with my balance and other challenges).

        Good luck with this! As a clumsy person (though not to the same extent) with a late-in-life diagnosis, it can be eye-opening and helpful, while also full of new challenges. I’m glad you’re navigating this and able to make some progress.

      2. Bunny*

        OP, I am a five star klutz, and was finally diagnosed with non-verbal learning disorder at 40. It explains a lot, but doesn’t get me off my bicycle, much to the fury of my doctors.

        Just FYI, you never know.

      3. Teach*

        OP, also chat with your physical therapist! Even if they are “just” working on the collarbone rehab, they should be willing to add balance work into your routine. PTs are often excellent problem solvers, especially if they know what your goals are, like beginner yoga.

  3. Doctors Whom*

    OP, I hope you recover well and quickly!
    I know someone who gave herself a concussion standing next to their bed – they standing next to the bed and then suddenly their head hit the bedside table and they were on the ground. Turned out it was a congenital problem with the tendon in their ankle – when it slipped out of place, boom, with no warning. There was more than one concussion.
    I am so glad that you are talking with your physicians about an underlying cause – and spatial processing definitely sounds like it could be it! I hope you aren’t in too much pain these days and that you get the answers you need.

  4. Delta Delta*

    I really like this update. Not because you’re injured, but because you’re finding out if there’s a cause to your clumsiness, which might be really helpful in the long run.

    I just re-read the original letters and was reminded of a former colleague of mine who ended up hospitalized because of a dog-walking incident that involved gravel, a steep hill, a guard rail, and a very interesting rabbit (interesting to the dog). Former colleague laughs about it now, but did also mention that the ER nurse grilled her pretty heavily about whether she was being abused.

    1. OP*

      The ER doctors fortunately seemed to realize I was safe from everyone but stairs lol. It helped that the morphine completely eliminated my ability to shut up and I was telling everyone who’d listen about how it hadn’t even been five weeks since I made a very public new year’s resolution on every social media I have to stop falling off of porches only to end up there. I was in a lot of pain, even with the drugs, but overall in good spirits and cracking jokes with the nurses. My poor girlfriend was so stressed out (I’d literally gone into shock after falling) but I was having a grand time.

  5. Hamburke*

    Good luck OP! I love my yoga class and it definitely improves my balance and even spatial awareness! See if they’ll clear you for something like chair yoga earlier than regular yoga. Chair yoga is usually designed for seniors who have movement, balance and muscle issues and I’ve taken those classes both after I had an eye stroke at 37 and when I couldn’t fit a gentle or flow class in my schedule. I’ve been in chair yoga classes where they use actual chairs or stools, and some that use balance balls so ask questions before signing up!

    1. quill*

      Seconding chair yoga! Part of the yoga I first did to work on my foot and ankle issues involved that type of pose modification so that you can isolate whether you need to work on balance or the actual muscles.

    2. Bunny Girl*

      Seconding chair yoga! And adding as a yoga teacher, restorative yoga can be super helpful too if you can find a class. A good class will use a ton of props to get you into a comfortable position that you’ll hold for a bit longer than a traditional hatha practice. Because of the props, it’s super gentle on the body.

        1. allathian*

          Yes, tai chi is great because you don’t need to go on the floor. I have mobility issues that mean the lotus asana is out of the question, for a start. I miss tai chi, but my teacher decided to quit completely when covid hit and I haven’t found a new group yet.

          1. quill*

            Still looking for a new restorative Hatha class after I moved… woke up with an attack of the clumsy this morning and remembered oh yeah, that does help.

    1. Popinki(she/her)*

      Yes, after reading the original letter I was wondering if OP had an undiagnosed issue with vision or balance, because because their issues go way beyond mere klutziness.

  6. Kes*

    Oof, I love the phrasing of ‘three porch-related ER visits in a six-month period’ but I hate that that was your reality. So glad to hear things are going well and you’re getting into a better position both in terms of your new job and also in terms of making progress on figuring out what was wrong and how to make things work better for you.

    1. OP*

      Yep, it was wild. Last summer I gave myself a concussion when I tripped up the stairs to my old apartment, then I broke my ankle in November at my new place when I missed a step carrying in groceries, and then in February I straight up fell four feet off the top step directly onto a brick walkway after I thought I’d be okay to let the dog out without putting shoes on (no ice involved, just straight up slipped). Hilariously, the day of my surgery was the three year anniversary of me falling down a fire escape, which had also landed me in the ER and on crutches for a few weeks.

      In the hospital before surgery they gave me a bright yellow bracelet that said FALL RISK in huge letters, I think I’m going to get it tattooed in either French or Aurebesh once I’ve saved some money.

      1. Sharpie*

        …go for Aurebesh and let your inner nerd exult every time you see it!

        And I’m really happy that you’ve found the clumsiness is treatable. Live long and prosper!

      2. acmx*

        Oh my! I practically snorted at “fall risk” and love the tattoo idea :)
        Heal well, OP!

  7. Tiff*

    My youngest sibling has vertical heterophoria which is a misalignment of the eyes that can cause vertigo and clumsiness. They got prismatic lenses and it’s helped them a ton! I have ADHD and poor coordination that results from that. So I am team ‘how did you manage to do that?’

    So glad OP is figuring this out!

    1. NoMoreFirstTimeCommenter*

      I first read “vertical heterophobia”. Now that would be an interesting condition…

    2. wet-coaster*

      Veering towards off-topic but I have to say your comment made me look up ADHD and coordination issues (shiny new ADHD diagnosis in my 30s) and, well. I guess that’s another tally for the “Wait, that’s not just me being dysfunctional? Other people experience this?” column.

      Today is gym day, so I get to practice my physio “you have been walking wrong your entire life,” and “you know, your core is actually supposed to take care of this” exercises.

      1. ShysterB*

        THIS EXPLAINS SO MUCH about my Second Child’s clumsy childhood. We didn’t get the ADHD diagnosis until she was almost 16…

          1. ShysterB*

            I have a friend whose kid was diagnosed with dyspraxia in middle school, but didn’t get the ADHD until near HS graduation.

      2. Very Social*

        Ooh, I have those exercises too! My physical therapist diagnosed me as “yeah, that [hip] is all jambled up.”

    3. Destroyer of Typos*

      My cousin has vertical heterophoria!!! She was doing research into ADHD because she suspected she had adhd, came across a blog or YouTube of someone who had adhd and VH, and just mentally filed it for later for no reason. And then the headaches and dizziness started, and she remembered the blog and managed to find the one provider in her area who did tests for it.

      She did their online questionnaire about her symptoms and their response was “please come in RIGHT NOW”. Prismatic lenses obtained and her life was GREATLY improved. She also got her diagnosis for adhd around this time too. All in all a huge win for her for sticking with trying to figure out why life has been SO HARD in many ways.

    4. OP*

      ADHD is actually the suspect here! Getting the meds covered took a ton of prior authorization nonsense but it’s been a few weeks and I’d say my collision rate with stationary inanimate objects has gone down by at least 80%

      Not to mention the absolute bonkers change in my general functionality!

      1. rubble*

        I was going to ask (with the heavy caveat that obviously you don’t have to disclose if you want to keep it private) what conditions your doctors were exploring, it’s interesting that you’re already looking at adhd! I also have it and often walked into the side of doorways and desks because I just couldn’t process how close I was to them. now that I’m thinking about it, I definitely do it less than before I got adhd meds (but I still do it, no perfect fix)! I am also short-sighted, and my depth perception is terrible outside of my glasses lenses, which I can’t imagine helps.

        1. First Star to the Right*

          I HATE the walking into doorways and tables thing. It’s gotten even worse for me since I developed this twitch (twitch is the best word I can come up with) in various limbs. You wouldn’t think such a minor thing could send you so off course but it really can.

          1. Chevron*

            I have wondered if I might have adhd for a while but always put my clumsiness down to hypermobility. But oh wow I CONSTANTLY walk into doors, desks, bounce off walls as I walk down a corridor….sorry to derail OP, but this has really opened my eyes!

      2. mairona*

        I too am a klutz with ADHD and have noticed that I typically break and/or run into things less often when I’m medicated! I’m glad you got the meds sorted out; that part can be a huge obstacle with tons of hoops to jump through after so many people have abused stimulant medication recreationally. Those “bad apples” have made the process of getting ADHD meds (even just a refill for them) into a very *not*-ADHD-friendly process, especially because you *need* the meds to have the focus to complete all those steps in an efficient manner.

        Back to clumsiness and frequent accidental self-injury, after reading your update, I may talk to my doctor just to make sure there’s nothing else going on. There are still times, even when medicated, that I’ll do something inexplicably clumsy (shoulder-checking a doorframe, knocking over a glass instead of picking it up, tripping over my own damn feet, etc) and it’s extremely frustrating.

      3. tiny moon*

        I identified strongly with this letter when it came out because I’m also legendarily clumsy and an easy bruiser, and since then I’ve been diagnosed with ADHD. My random injuries decreased significantly after I started treatment. (Sure wish I’d figured this out when I worked at a women’s clinic.) I’m glad you’re getting care, and that your work is so supportive!

      4. Magpie*

        I also have ADHD, I would suggest looking into MELT as well as yoga to improve balance and proprioception (sense of where your body is in space) – it’s a branded program but the fundamental concepts are sound. It’s meant to massage and release fascial tissue (the connective layer between muscle and skin) to help with chronic pain, and that’s why I initially started using it, but I’ve found it’s really helped my proprioceptive and spatial awareness as well.

      5. Alana Bloom*

        Oh, interesting! I always figured that my ADHD was part of the reason that I bump into things (mostly on a “small bruises” level, thankfully), but it’s never felt like a big enough issue for me to investigate. It’s wild how many seemingly-unrelated things are actually related to or comorbid with this condition – like, I’m also hypermobile, which is apparently more common in ADHD-ers.

    5. King Friday XIII*

      I just got a vertical heterophoria confirmation from my eye doctor after years and years of vertigo, neck issues and anxiety, and I only knew to ask about it because of a post on an ADHD website. I am still waiting for my new glasses but I feel like suddenly I’m seeing posts about it everywhere and I hope it helps people know to ask about it in eye exams, so thanks for sharing!

  8. Essentially Cheesy*

    Very interesting! I’m glad you seem to be getting to the bottom of things!

  9. my cat is prettier than me*

    Collar bone breaks are brutal. I’m glad you’re on the up and up.

    1. OP*

      The ER doctor’s exact words were “split like a log.” It was a long horizontal break and if I had a dollar for every time a doctor has told me they’ve never seen anything like it I’d probably be able to pay for the tattoo I want to get around the rad as hell 6+ inch scar.

        1. OP*

          Genuinely the worst pain I’ve ever experienced. My pain tolerance is higher than the average person’s and it was awful. My personal pain scale reference was kidney stones as a 9 and waking up too early after having an organ removed as a 10, but by that metric this was a 13. I blacked out and went into shock, and the morphine they gave me in the ER didn’t do much for the pain, just kind of made me care about it less lol

      1. Hrodvitnir*

        Woah, that is impressive (though a bad time.) I also love that you’re getting a tattoo around it – though if you don’t already know, FYI any tattooing on the actual scar really hurts. I had assumed the opposite, but the single line I had tattood over a scar was 10x more painful than around it!

  10. 404_FoxNotFound*

    I’m very glad you started looking into this, and hope whatever you pursue helps you out re balance/proprioception. I ended up starting martial arts for similar reasons and gosh has it helped me over the years as my own diagnoses/ability has shifted. Wishing you luck and many fewer injuries!

  11. Cohort 1*

    Did the word “proprioception” come up? As a small child my son fell out of chairs regularly, tripped and fell more that other little kids, and complained about pain in his shins. He fell out of chairs because he couldn’t tell when his tush was seated in the chair vs sort of seated. His shins hurt because he didn’t know where the ground was in relation to his feet, so either put his foot down too hard or not far enough and fell the rest of the distance. Occupational therapy worked a treat. Hopefully you’ll have the same success with your therapy and many fewer accidents.

    1. KoiFeeder*

      I was going to ask the same question! On the side of the small child who had that problem, occupational therapy is a lifesaver and honestly it’s a shame you can’t get it as an adult (my proprioception is better, but it’ll never be normal- insurance only covered OT for two years and that just wasn’t enough time to fix the everything).

      1. Healthcare Worker*

        Occupational therapists do treat adults! And we can continue work on proprioception. Please check with your insurance again to see if it is a covered service.

        1. KoiFeeder*

          LOL, my insurance? Covering things? Hahahaha- no. My insurance keeps trying to not cover the medication that will keep me alive, so about every six months my doctor has to yell at them again.

    2. The Prettiest Curse*

      A few years ago, I listened to this really fascinating podcast episode (I think it was the Guardian Science podcast) about a British man who is one of the few known people in the world to have no proprioception. (He lost the ability entirely after a viral infection.)
      I think he had OT and physical therapy, but he also managed to essentially re-program his brain over many years to the point where he can now compensate enough for the lack of proprioception that it doesn’t affect him too much.

      I think that I might have very minor proprioception deficits myself, but I have also learned to compensate for it over the years, so I don’t have nearly the amount of minor accidents that I did when I was younger.

      1. allathian*

        Yes, same here. I’m clumsy and uncoordinated, I can’t dance to save my life, and any form of motion that is more complicated than walking, riding a bike, or cross-country skiing is out of the question. Tai chi did help, but I haven’t been able to go since March 2020 so I’m losing the benefits.

        I draw a line at trying to drive a stick shift. I did pass my driving test driving a car with manual transmission, so I’m allowed to do it. But I don’t want to, because I lose my sense of spatial orientation if I don’t keep my left foot firmly on the floor of the car.

    3. Pippa K*

      I know this suggestion won’t be suitable for everyone, but if OP or someone in a similar situation has the chance to try out therapeutic riding (horses), I’ve seen it have wonderful effects on a person’s balance, spatial processing, and other things. In the US, this is apparently sometimes covered by insurance when called hippotherapy, and it might be worth looking for local providers. My regular PT after a head injury was willing to prescribe it for me (but I ride anyway so we just focused on safely returning to that).

      1. Lizzo*

        I know that “hippo” refers to the scientific name for horses, but I just can’t help imagining dancing hippos in tutus (a la Fantasia) as a prescribed therapy regimen…

    4. MeepMeep02*

      Oh interesting! My 6-year-old daughter is exactly like this, and also complains about pain in her shins. I never connected that with the clumsiness. I think we may be investigating occupational therapy too.

    5. Ace in the Hole*

      My little sister had similar issues! She’d also fall out of chairs or “trip” a lot because she had to maintain balance by visually looking at her surroundings. If she got distracted and turned her head too fast or closed her eyes for a moment she literally couldn’t tell which way was up.

  12. Dancin Fool*

    As someone with several chronic health conditions, many that went unchecked for years, it is amazing how we can adjust to what we think is normal with our bodies. When I finally got treatment for something I couldn’t believe that I had lived with it for so long. It just felt normal because it seemed like it had always been like that. I’m glad that OP has looked into it and is getting the help and support needed. Wishing you the best for a speedy and healthy recovery!

    1. Danish*

      Same. I have a few now-medicated conditions that, whenever circumstances cause me to temporarily re-experience those symptoms I can’t help but think “and I just used to live this way, huh?”

    2. NotARacoonKeeper*

      Yes! There was a Twitter thread last month among people with my condition (hEDS, which is rare, underdiagnosed and underresearched) about “what is something that you used to think was normal, that you now know was a result of hEDS or related conditions?” It was fascinating, and also I learned even more things that I deal with every day aren’t normal.

      I highly recommend looking into online communities like Twitter and Reddit for folks with rare or underserved health conditions. It’s been so helpful for me for this reason!

    3. AGD*

      Same for both of two chronic health issues. I had no idea how much I was struggling in ways other people just weren’t.

    4. A Wall*

      This comes up with my chronic illness all the time (EDS, a version of NotARacoonKeeper’s above). If I had a dime for every time a nurse has told me “you couldn’t possibly have been experiencing ____ all this time because you’d have noticed” and they turned out to be dead wrong, I’d be rich.

      Turns out that if you experience a thing ALL the time, you don’t notice it because it’s just the entirely normal functioning of your body. Imagine that!

      1. NotARacoonKeeper*

        I was in my mid-20s, standing in line for a ride at an amusement park, when I realized that every other adult wasn’t having major back pain from standing. My back pain started at 11. It took me a decade and a half to realize that most people aren’t in pain any time they are vertical.

        (Ironically, I now have POTS from long COVID, so I can’t stand long enough to get back pain, so I guess I’m normal now? *crylaugh*)

    5. MCMonkeyBean*

      I am a late-in-life-diagnosed ADHDer and someone who apparently has aphantasia but had no idea that was a thing until reading an article about how crazy it is that some people have it.

      I have spent so much time in the last several years just thinking about the fact that it’s impossible for us to know whether so many of the things our brains and bodies do are things everyone experiences or some kind of outlier. I guess at least one good thing about the internet is that increased communications about our experiences can help know how common or not certain things are…

  13. Happy Thursday-Yay!!!*

    Had collarbone surgery spent 7 weeks in the sling and all through rehab my hubby called me “T” (for T-Rex ). It’s a bear but there really is improvement—coupled with yoga once you can (and I second the suggestion for starting with chair yoga, or mat-based Pilates since you’re already ON the ground) you’ll be impressed with how well you recover. I still do a basic maintenance routine 15 years later—it’s how I’ve been able to go back to cycling, hiking, and kayaking.

    One thing—the straps of bras and workout tops can put pressure on the plate and screws, so do be sure to try them on for a period of time before purchasing (or ruling out them out for a return if you bought online). I still have a few that I really hate wearing because of how they make that area ache.

    And congrats for finding docs who have been able to help you get at the root cause!!!

    1. OP*

      I was in a sling for three months and couldn’t do a bra strap for another month after that. My girls are large so that was a struggle (at least when I wore the sling everything was kind of kept in) but even now I have for sure been making sure I take it off, or at least take off the strap on that side, after a certain period of time.

  14. oh no*

    Echoing what others have said–I have poor proprioception from ADHD/autism and bruise easily from EDS, and your original question made me go “hmm”, but I didn’t want to do the ol’ internet diagnosis dance. I hope you’re able to find a solution, and until then, solidarity from this eternally black-and-blue klutz! (At least my hypermobility protects me from broken bones…)

    1. Minimal Pear*

      Yes! The original letter immediately made me think of EDS but I didn’t want to say anything. (Whether or not I have it is an… open question. Sigh.)

      1. KoiFeeder*

        Getting an EDS diagnosis is bizarrely difficult. My brother, who is so hypermobile that he practically can lick his elbow? Nope. Me, who can’t touch my toes, but dislocates constantly and chronically? Yup- but only after getting scanned and tested and the “oh. there’s no cartilage left in there.” talk.

        1. Fikly*

          It’s because they are searching for the genetic mutation for the last (but most common) subtype of EDS, hypermobility subtype, so they made the diagnostic criteria very very conservative so as to not include people who might be misdiagnosed. Which is great for the study, but terrible for all the people not getting correctly diagnosed.

          It’s been handled very badly. What they should have done is used different, narrow diagnostic criteria for the purposes of the study, but not changed them for everything else. I have a screamingly bad and obvious case of hypermobile EDS, it’s destroyed huge amounts of my body, but technically, I fail the Beighton Score criteria, because it only counts a few joints (which is beyond stupid, as EDS can affect literally any joint) and my knees are hypermobile sideways, not up and down, but the scale only counts it for up and down.

          I got diagnosed because I found a doctor who took a thorough look at me and said, ok, technically, no, but in reality, huge yes.

          All other 12 subtypes they can genetically test for, so as long as you can pay for the test (or convince your insurance to do so) it’s now pretty easy to get diagnosed.

          1. KoiFeeder*

            …Huh. There is a clear genetic component for EDS in my family. I wonder if I should go get tested (lol, my insurance paying for anything).

            1. Fikly*

              Yup, EDS as far as we know is 100% genetic. Now, that doesn’t mean you’ll always have a clear documented family history, because it seems likely hEDS is recessive, and also, spontaneous mutations do happen, but it’s a genetic disorder where collagen isn’t made properly. People tend to think of it then just causing soft tissue problems with ligaments and tendons, but the reality is that collagen is in everything in your body, so it can mess anything and everything up. For example, it’s why I have severe sleep apnea and also why I don’t clot effectively. But because genetics is weird, the defect isn’t always expressed in every cell in your body, so every case is different.

              It’s generally a good idea to figure out which subtype you have, because each subtype has particular issues to watch out for, and some – vascular in particular – can be fatal without intervention.

              Even the most common, hypermobile, is known for having cardiac issues, in particular mitral valve prolapse, so as part of getting diagnosed, I had a congenital cardiac echo (this is not your average echo, it takes around 75 minutes and they scan you from neck to abdomen) to make sure everything was as it should be.

              I don’t know how much the testing is these days. In general, prices for all genetic testing continues to come down, but it’s been years since I went through getting diagnosed myself.

              1. NotARacoonKeeper*

                I’ve heard differently about the genetic roots of hEDS, and that the recent advances in identifying a possible gene only explain a moderate portion (~60%? I forget the details) of cases, at least in the one study.

                There has been an interesting surge in new diagnoses among the long COVID sufferers (who did not previously have symptoms), which is supporting an existing theory that some hypermobility can be prompted by viral infection. The mechanism could be through autoimmunity or inflammation in the connective tissue, mediated via mast cells. It could be that there is a epigenetic change among those with the gene, prompted by infection, but I’m not sure that “all hEDS is genetic” is true. I also worry perpetuating this could be harmful for those seeking a diagnosis in the future by forcing them to prove their illness, similar to how people with ME/CFS and fibromyalgia have to.

                1. linger*

                  N.B. there’s also some chance that the observed association is exaggerated by comorbidity (i.e. in some cases it may have been a pre-existing condition, but at a level manageable by the individual, and so staying outside a doctor’s attention, up until compensatory systems were weakened by Covid).

                2. Fikly*

                  If it’s epigenetic, it’s still a genetic disorder. People with the gene would now have it being expressed much more than it was before. What I meant was that all hEDS is a genetic disorder, but it doesn’t have to be inherited – all genetic disorders started from a spontaneous mutation, after all, and even known genetic disorders can still start in individuals from a spontaneous mutation, rather than being inherited, or come from other causes. There are also varying levels of expression and that’s something we don’t understand well at all yet.

                  I would be curious to know if the surge in diagnoses is with hEDS or other subtypes. If only hEDS, I would be very hesitant to lump it under hEDS without genetic confirmation (which I acknowledge we cannot have at this point) rather than a separate disorder that has similar symptoms of hypermobility. There are many types of hypermobility that aren’t EDS. Many of the problems I have due to EDS have nothing to do with hypermobility. The blood clotting, for example, is because due to the collagen defect, there isn’t enough friction between the clots my body makes and wounds, so they don’t stick.

                  I also have all three known types of long covid syndromes, and one of them is systemic inflammation, which beyond being problematic in and of itself, is known to aggravate any conditions you already have. So it could also be that a subset of the newly diagnosed had hEDS the entire time, but weren’t symptomatic enough to know it, and now are due to the inflammation. After all, hEDS is essentially a progressive disorder, because while your collagen doesn’t get more defective, all of your tissue using it does, over time.

                3. A Wall*

                  You’re correct across all lines here (as far as I’m aware, anyway) except that none of that precludes a genetic cause. It has been generally assumed that hEDS is not caused by any simple pattern of a few genes, it’s a constellation of many of them, which is why it’s still not pinned down despite how fast and inexpensive sequencing has become in recent years.

                  As Fikly pointed out, change in gene expression caused by viral illness is not not genetic, it’s just not what most people think of as genetic. Ditto the fact that the identified likely candidate genes aren’t even present in everyone with the disease– that happens with some traits that are determined by the expression of many different genes in different locations, which was already what we suspected about the roots of at least some forms of EDS. For context, we are at a not dissimilar place in determining how people get green eyes.

                  That’s why hEDS is diagnosed based on symptoms / presentation and will continue to be the norm for the foreseeable future no matter how many candidate genes we find (in my opinion). We are still very, very far from being able to turn that information into clinically useful testing. At best, those candidate genes might end up something like HLA B27 and ankylosing spondylitis: among the potential diagnostic criteria, but it alone does not get you an AS diagnosis, and not having it won’t stop from being diagnosed with AS if you have the other signs.

                  Though, not to be grim, but the experience of having almost any variety of EDS is already about the same as something like ME. I got diagnosed over a decade ago and at no point between then and now have I been able to find doctors that knew how to deal with me, or took me very seriously, or addressed this as a legitimately debilitating problem. Back when disability advocates with ME started to get really public, I remember reading their stories and going, oh yeah, that’s about how this goes. Pretty identical experience. And now whenever I read breathless accounts of long covid where the reporter is describing POTS like it’s an incomprehensible curse from an ancient wizard I’m just like… Boy we really haven’t moved the needle on this very much, have we. We’ve been trumpeting about this in the streets for years and evidently no one has actually listened to us at all.

                4. Minimal Pear*

                  @ A Wall I cracked up at the bit about the wizard curse. Although TBH maybe my POTS is an incomprehensible curse from an ancient wizard…

                5. Dramatic Intent To Flounce*

                  I’m currently in a vague in-between space where it’s clear there’s a genetic component to my hypermobility to OBSERVERS, but no one on that side of the family was diagnosed before arthritis and the like set in (and my next-closest cousins are both cisgender men, making it less likely they’re hypermobile because testosterone reduces that laxity,) my skin doesn’t have the right texture or elasticity, and I’ve got MCAS with antibodies for my own collagen.

                  Officially, as far as anyone can tell, I don’t have hEDS. (And I test negative for other types, which is fortunate – I am quite pale, bruise easily, have skin that is not velvety but is texturally Different compared to someone without hypermobility, and have just visible enough veins that vascular type was a concern.) It’s definitely a connective tissue disorder, but ambiguous cause. The collagen antibodies suggest that the MCAS is the core problem, and there’s been some speculation from the community that mast cell issues are a significant component in long COVID. That will be interesting, especially since we know in hindsight I always had these issues but getting breakthrough COVID escalated things to a much more apparent level. And obviously MCAS/POTS-related stuff can run in families, suggesting it’s got a genetic component itself. But I also wouldn’t be shocked if/when we identify the hEDS gene for it to be all over my maternal grandmother’s branch of the family.

                  Being a zebra is weird.

    2. quill*

      Yeah, I had a thought – whatever the family brainweird does to me, specifically, it results in moments of extreme clumsiness. OP, if you find that absent other solutions pens and tea mugs seem to jump out of your hands as soon as you’re not paying attention to them, or your feet seem to forget the correct way to contact the ground… I don’t know what the solution is but I’m over here looking for it too.

    3. kicking_k*

      Hypermobility is also associated with poor proprioception, though, so it’s got you (and me – I’m hypermobile and awaiting assessment for ADHD) coming and going.

      I’ve found simple physiotherapy exercises, such as balancing on one leg during idle moments, do help. Not all the way, but they help.

      1. mean green mother*

        My first thought was EDS—but then my first thought is almost always EDS.

        OP, from one proprioception-challenged person to another, hang in there! And if you are at all hypermobile, careful with that yoga…

    4. OP*

      A LOT of people suggested EDS on my original two posts, but I’d actually already covered my bases on that one specifically. I fortunately don’t have it but the ADHD/spatial awareness connection was a big “ohhhhhhhh” moment for me.

  15. RJ*

    OP, what a terrific update! I’m glad you’re on the management track at your new job and I wish you all the best during physical therapy and beyond. I’m a long time yogi, currently studying to be a teacher and I highly recommend that you try yin yoga once you’re at a point to do so.

  16. CommanderBanana*

    I’m glad you investigated further. I was an EXTREMELY clumsy child – tripping, smacking into walls, walking off of stairs, and had a series injury falling down the steps. I couldn’t play sports, had no hand-eye coordination, couldn’t ride a bike. I was enrolled in ballet to make me ‘more graceful’ and got kicked out a few weeks later from constantly smashing into the other kids.

    Turns out I needed glasses. Badly. I should have been in glasses as a toddler and I didn’t get them until I was nearly 12. I internalized the whole “clumsy kid” thing and it turns out I wasn’t actually clumsy, just blind. If you are so clumsy that you are constantly injuring yourself, there’s probably an underlying reason!

    1. Smithy*

      Same but different situation, except my identifying characteristic was not reading. In kindergarten my teachers told my parents that I just wasn’t ready for it, but my mom was unconvinced and that’s ultimately how they discovered the need for glasses.

      That being said, while mom was all over that one, she let my asthma/allergies go wildly unchecked and when I finally sorted those out in adulthood it really was an “oh…..” In childhood, I’d just been labeled as a more fussy indoor kid when the reality was that I was allergic to a lot of the plants/trees/grasses around where we lived.

    2. Minimal Pear*

      Oh man yeah it turned out I was really struggling with sports that involved catching/hitting balls in middle school because my depth perception was screwed up by having one eye that was much more nearsighted than the other. Turns out when you give me glasses I can catch stuff without a problem.

    3. Not So NewReader*

      Your comment really touched my heart. I am sorry this happened to you. It’s tough enough being a kid, trying to fit in, trying to figure out the rules of life, and your journey was that much harder. I am glad you got some proactive help finally.

      A person in my life never over came the clumsiness thing. And now they are losing their sight. OP, now is the time to take charge of this matter. As we age, it’s harder and harder.

      1. CommanderBanana*

        Thanks! My parents didn’t bother enrolling me in school until I was about 12, so no one noticed until I was in a classroom and couldn’t see anything. The fall down the stairs ended up requiring pretty extensive surgery when I was in my late 20s / early 30s to fix some of the remaining problems that result from smashing face-first into a wall and never having the broken bones fixed.

  17. Not Tom, Just Petty*

    This reminded me of something that I read about Daniel Radcliffe. I was surprised to learn it was a thing and I thought it was great that someone in the public eye could shine a light on something that people brush aside.

  18. MEH Squared*

    Oh, wow, OP. I’m glad this worked out for you and that you found out it wasn’t that you were just clumsy. I, too, have spatial issues, but I never connected it with my own clumsiness. So thank you for giving me something to think about. I would like to suggest Taiji as an alternative to yoga as it’s what helped me become more aware of my body and how it takes up space. I have been become much less clumsy the longer I study Taiji (tai chi).

    Congrats on the new job and I hope all continues to go well.

    1. allathian*

      Oh yes. I haven’t been able to go since the start of the pandemic, but when I went, I noticed a definite improvement in my spatial awareness, balance, and coordination in general. Tai chi is also good for people who can’t be or don’t like being on the floor.

  19. TWB*

    My spatial awareness issues (among other things) are due to Sensory Processing Disorder. You’re not alone in your clumsiness, OP and it’s a running gag where I work as well.

    Good luck and a speedy recovery!

  20. hodie-hi*

    Glad things are (getting) better for you, and you handled your initial problem well. I also like the recommendations to start with chair yoga.

    If you find it helps and you later enjoy advanced yoga, consider finding a balance coach too. A friend of mine worked with one and said it did wonders for her balance and strength in general and particularly for her athletic pursuits. At the advanced level she was doing stuff like hopping single-footed on a series of balance disks while catching and throwing a medicine ball, doing squats with weights while on a balance ball.

  21. Jamboree*

    So glad to hear this update. That said, when I saw “clumsy letter writer” I was thinking it was about …. writing skills, and I’m always looking for tips to write less awkwardly.

  22. Another JD*

    I’m so glad you’re getting treatment! I am also clumsy and lack spatial awareness which results in so many bruises and ridiculous injuries. I found my old childhood test scores the other day, and I was off the charts in everything but scored in the 30s for spatial orientation and reasoning. So at least I’m consistent. I’ve done both yoga and pilates, and found pilates to be of more help in preventing clumsiness-related injuries. Both focus on body awareness, but pilates also builds your core which helps you catch your body faster when falling and you can react quicker when about to run into something.

    1. pancakes*

      I wonder if Alexander Technique would be helpful as well? That’s about body awareness too, though mostly thorough posture I think.

  23. Minimal Pear*

    OP you might want to consider looking into martial arts as a possible way of getting more coordinated. I did tae kwon do for a few years and while I never really stuck with it, I remember we did a LOT of learning how to fall without hurting ourselves. If I’d stuck with it, that kind of thing would probably be a much more automatic reaction whenever I fall.

    1. quill*

      I second this, but in my case it was stage falls, which are very important considering that my feet are the wrong shape so sometimes they just stop doing things. Fell twice on the trail this weekend, no injuries. But also things like yoga to strengthen other muscles and properly supportive shoes for the bad joint/bone combination have helped a lot.

      Also, lack of spatial awareness does tend to run in my family.

      1. The Prettiest Curse*

        I think ballet might help somewhat as well, assuming the OP’s doctors approve. A lot of ballet exercises involve strengthening the ankles and you also work a lot on balances. And if you find a good adult beginner class, you will never have to go anywhere near a pointe shoe.

    2. Another JD*

      I am super clumsy and failed out of high school martial arts in the first semester when I threw out my knee and ended up on crutches. I got injured because I couldn’t learn the routines at pace, and tried to keep up anyway.

  24. Actually Autistically Anon for This*

    I feel you, OP! I spent my teenage years and twenties doing really physical things… but I was still a clutz and I had to learn everything the really hard and painful way. Natural grace I did not have!

    I’m almost 40 now, and last year I was diagnosed with autism. Suddenly so many things made sense… including my spatial orientation problems, my complete lack of depth perception, my dyslexia/dyscalculia, my tendency to make injuries worse because I would forget I was hurt and whack them on something, and my sensory processing disorder. Finally understanding that they were all connected, and that there was a REASON so many things were harder for me than other people, really helped me start to get a handle on it for the first time in my life.

    Breaking your collar bone? Scary and terrible, and I wish you hadn’t had to experience that. But I’m glad you were able to connect with specialists to start unraveling the core reason and figuring out strategies to make your life better! Beginner yoga is awesome for this kind of stuff– particularly if you can find an instructor that embraces props like bricks and straps. Using a prop for some poses really helps me figure out where my body is in relation to everything else, and what the proper alignment for that pose should feel like.

    Have fun learning new things!

  25. Nea*

    I am going to pass on something that has been a life changer after my bones got screwed back together:

    Go find an excellent sports massage therapist

    Yes, the physical therapy will help; yes, the yoga will help; yes, face the spatial processing challenges. But none of that will unlock post-surgical muscles and break up scar tissue like a sports massage therapist can. Mine has worked miracles. The right one will do miracles for you too.

    1. KoiFeeder*

      I’ve found success with myofascial massage breaking up scar tissues and adhesions- what’s the difference between that and sports massage?

      1. Nea*

        I honestly don’t know if there’s a difference. The person who told me to find a sports massage therapist said “they’re used to working with injuries.” I can say that mine has done more than just break up scar tissue and adhesions – he also released muscles that had locked tight. I don’t know if myofascial would do that or not.

    2. OP*

      Oh extremely! There’s a small massage therapy component to my PT but I do for sure plan on getting into proper massage therapy once I stop missing so much work for other appointments.

  26. CatMintCat*

    I’m glad you pursued this. At age 61 (yeah, late I know) I was diagnosed with dyspraxia and low muscle tone, causing the sort of problems you’ve described. I have zero spatial awareness, combined with poor eyesight, and regularly fall off, over and up things (the time I broke my arm falling upstairs went into school legend). When I was a child in the 60s, this was called “Yeah, your kid is really clumsy”. While I’m not pursuing any treatment it is nice to have a name for what’s going on.

  27. Anon in nj*

    Yoga is amazing for balance but please make sure you find an instructor who can help you modify positions/ understands your issues.

  28. Bibliovore*

    We don’t diagnose here but I was relieved to hear that my “falling down disorder” was part of my lack of proprioception. I do NOT know where my body is in space. I have other issues including a rare connective tissue disorder but having an actual word for my “klutziness” was a relief.

  29. Sleepless KJ*

    Just wanted to add that Tai Chi is fabulous for balance and also very gentle and low impact. If you find yoga doesn’t agree with you for any reason, look into Tai Chi. Best wishes on your road to health and recovery!

  30. Liz*

    OP, I’ve sprained my ankles three times in twelve months, plus I have a whole host of minor issues — not to mention the scratches on my Apple Watch face from all the times I’ve whacked my wrist on passing walls. I’m not in nearly as rough shape as you, but you’ve just inspired me to try to find out if there’s some underlying (and fixable) cause to my clumsiness. Thank you!

  31. Anonomatopoeia*

    I love this update SO MUCH. (Also, I imagine all the navigating weird conversations and figuring out how to accommodate your body’s nonstandard behaviors have probably taught you skills that will be great for a manager as far as making a place your reports want to work, so that’s pretty great, too.)

  32. Erin*

    What a great update!! Thank you for the updates, and I’m so sorry to hear about your collarbone. Ouch. My best friend had that happen a few years ago, and, wow. I never realized how it affects so many motions.

    Congrats on your new job, and I’m so happy that thru are being accommodating to you! It is also great that you are getting to the root of your clumsiness. I wish you nothing but healing and an injury-free future!

  33. Sherry*

    Writing partners split jobs all the time and it would make sense to do this. If they got a show one person may work in one city and another might work in another city at certain times.

  34. Edwina*

    I’m so glad you’re on a path to figuring things out!

    I want to suggest one more possible thing to consider as you get stronger (and of course, once you’re all healed)–strength training. I, too, have always been kind of a klutz, but a few years ago I started working out twice a week with a trainer, and doing mostly strength training/weight training. He is very kind and works at my pace (while also pushing me–there’s a certain amount of complaining from my end haha!)–but he has also explained about the strength of your core, and working on your “proprioception” –your body’s ability to sense movement, action, and location–much of it happens just below your consciousness, but as you strengthen yourself, and work on that and your balance, that improves your reflexes and your ability to “right” yourself. I have definitely found that I can regain my balance much quicker if I trip on something; I can catch things much quicker if I drop them; and I can dodge those doors I used to walk into. It’s so much better!

    Yoga, because of the way it also works on your core strength and your balance, is terrific (he swears by it too and always has me do some yoga stretches at the end of our sessions)–but also consider weight training. It’s actually a lot of fun, esp. as a woman, to feel stronger in so many ways.

    Good luck and I’m so glad everything is on such a positive path for you!

  35. kiri*

    Solidarity, LW! I spent the first three decades of my life tripping over things constantly (and trying to laugh it off, because what else are you gonna do?). When I got my current job and had good health insurance for the first time in my adult life, a podiatrist referred me to a neurologist for some tests, and it turns out I have a peripheral neuropathy (Charcot-Marie-Tooth is the name of the disease) – it’s easily managed, and I’ve gotten hooked up with all sorts of specialists – and I now have braces that support my feet so I’m not tripping over things anymore! Wishing you the best of luck as you get things figured out.

  36. Antilla the Hon*

    Oh my gosh. This is me! Despite being a former gymnast, I am notoriously klutzy and I’m always injured. In my first couple of months at my new job I had some weird accidents: cut the end of my finger off and hit the digital artery (think bloodbath crime scene), fell down the stairs and dislocated my tail bone, and a bicycle wreck (spectacular giant bruise visible in my Zoom calls). I’ve questioned whether some of this is due to a “spatial” issue, But I really think this latest round of extreme accident proneness is due to me being so overwhelmed at work that I am always only halfway “mentally present” when going about my life. It’s actually been a very distressing experience, making me afraid to drive or even get on my bike. I get very embarrassed by it because I’m afraid others will think my spouse is abusing me or that I am a faker, malingerer, etc. I’m actively looking for a new job that doesn’t have such a heavy load of stress on my shoulders to see if another job would be a better fit and give my poor brain a break.

    Letter writer, thank you for sharing your update. I’m sorry you were going through this and I’m glad that you were finally getting some answers. Your letter made me feel a little bit better to know that I am not alone in this struggle.

  37. Florida Fan 15*

    I’m glad you’re on the mend, OP!

    I have a sister who’s a world class klutz and was always covered in bruises as a kid (she’s better now). I’m not kidding, one time she was standing in the middle of the room with nothing around her, took one step, and tripped, over dust, we think. We moved a lot and it wasn’t fun for our parents to have new neighbors, teachers, whatever, give them the side eye. Luckily, Sis is a social butterfly and it only took people a couple of days to see her fall into a bush, get tangled in a jump rope, or trip over their cat.

  38. Texas Teacher*

    I have balance/spacial difficulties that are related to my learning disabilities. I wish schools would do more to alert parents of these symptoms when diagnosing LD’s and setting up 504s/IEPs. Then kids could get OT/PT through school, reducing injuries and making a better quality of life.

    Examples of mine.
    When there is no difference in elevation between the parking lot and the sidewalk, just a really bright crisp red line – I will trip as my foot “passes through” the sidewalk “surface that I see and hits the actual surface.

    On stairs and escalators the strip at the edge of the stair is a different color (so visually impaired people can tell where the edge of the stair is) I will see an Escher-inspired staircase. This is especially true in movie theaters with the rope light on the edge of the stairs. So on staircases, I drag my foot along the stair to find the edge. On escalators, I stand on the standing side and focus on where the transition from the escalator to the floor to get off. Occasionally I’ll get a rude person behind me mad about my speed. Most people ask if I need help.

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