I had absolutely NO idea when I fell down the Ehlers-Danlos Syndromes rabbit-hole back in 2012 suddenly landing in a wheelchair that I would end up falling down several other massively long rabbit-holes with yet other rabbit-holes attached, ack! Much less that I would stop walking for a year, and end up using crutches and then a cane indefinitely after that, just like my late aunty did in her forties.
But I did, aided by becoming a support group leader out of the gate. (Yes, in my wheelchair to boot.) Starting with learning about MCAD (all types of MCDs including the newer diagnosis of HaTS, but mostly mastocytosis and/or MCAS), dysautonomia, wonky immune systems, autism and ADHD, and autoimmune diseases.
No, not everyone has all parts of the CC. Though some unlucky souls actually have quite a few pieces of it, no kidding. And most families will exhibit most if not all parts of it throughout the family, even if not all in one individual.
One member may be diagnosed as autistic and maybe MCAS or allergies. Another with hypermobility (EDS or HSD) and MCAS. Another with POTS and fibro or hEDS/HSD but with many “sensitivities” (likely undiagnosed MCAD).
Some will rack up multiple autoimmune diseases (they often run together, alas). All may be nearsighted (a common sign of a connective tissue disorders involving faulty collagen). One or more may suffer from clinical depression, often lifelong. Often dysthymic. And or anxiety. Another may have ADHD. Or both, aka “AuDHD” like me. (Late diagnosed just last year at 54, sigh. Oh 20/20 hindsight!)
But, even within a given category above, no two people will manifest their condition the samedespite many common traits or experiences.
And it’s a bad idea to generalize one subset of traits to a group as a whole.
Why? Because that results in stereotyping. That is, using a subset of folks to represent the whole group. And, risks missing many other people who share the same issues, but don’t present or appear or behave the same as you or your subset, right?
Within the hypermobile community alone, you may find some people have shallow hip sockets allowing them to pop theirs out more easily (don’t do this!), while others of us may have deeper ones, and/or tighter ligaments there, preventing this. Some can bend their thumbs to their wrists a la the Beighton 9 point scale, while others of us can’t. (Raises semi-bendy hands.)
(Please do not force yourself or anyone else to perform the Beighton 9 point scale figures if they hurt at all. You can do permanent damage! Take pictures of your kids or friends doing them the first time while they are young and bendy, so they can avoid injury later on too.)
Some like me feel pain super easily, while others with sometimes rare and serious forms of EDS (like classical-like clEDS, not to be confused with cEDS) don’t feel nearly as much pain as I do – until too late.
One friend of mine with clEDS continued biking around with a torn esophagus as a young adult until it just felt “too weird” and she finally went in to an ER! It took two visits before they realized what was wrong and saved her life. She also broke her back as an adult in a fall a few years ago and didn’t know it. It just didn’t feel that bad to her. (She knew she had injured herself somewhat to be clear, but not the extent of her internal injuries.) She and her son (who also has it) have to remain super vigilant of skin breaks and injuries now to avoid sepsis and more.
By contrast, I can feel it if you even look at me hard (okay, maybe a wee exaggeration, but not much), and if my bones are even thinking of going out of place, much less starting to. And am super sensitive to clothing tags etc. We often joke that I got her dendrites! (Uhm, you can have them back!)
Speaking of sepsis, some folks have weak immune systems, sometimes full blown Common Variable Immune Deficiency (CVID) and catch almost any bug that even looks at them. Others, have strong immune systems, and ward off more bugs than not. But you can’t tell just by looking who will have which level of immunity. (I’m sort of middle of the road, touch wood quick.) The former are often stuck masking and hiding out at home since COVID19 emerged worldwide in 2020, alas.
Some people believe in vaccines and get every one they can with little to not trouble at all and to great effect. Others believe in vaccines, but literally cannot get them, either some (e.g. flu shots cultured from eggs), or any for medical reasons. Some people get vaccines, but don’t get as much benefit from them as others. (Again, our immune systems widely vary in responses.)
Some have been vaccine injured, but almost no one believes them. Others don’t believe in or want vaccines at all even if they might help. (Vaccines do NOT cause autism, however, that myth has been long debunked.)
Some folks run the average “normal” temperature of 98.6F. But many of us do not. I run 97.3F on average as do several friends. (Some run even lower.) So 98.6F is a low fever for us. And 100 F is the start of a high fever for me. Really.
Some folks run an average resting BP of 120/80. I do not. My healthy resting BP is 110/70. I have friends who run even lower on average. So, 120/80 is actually mildly elevated for me and others. (There may also be others who run higher on average but I don’t know any.)
Some of my friends are sensation seeking, and love really loud heavy metal music and running around and “head banging” type movement. (Running, parkour, moshpits, more.) I am super sensitive most of the time, and am the opposite – I can’t handle loud heavy metal or any other kind of music if I’m not “in charge” of it, or not in the mood. (I do love me the occasional loud Serbian brass band, or other lively Balkan music however. Don’t ask!)
And I can feel my clothing tags and the seams in my pants which irritate me. And can’t stand dogs barking. Others love being surrounded by lots of dogs even if they are all barking. (I love dogs, just not their barking to be clear.)
Some of my friends love spicy foods, and will literally seek out the hottest peppers and spicy dishes. (I watched one young friend chow down habanero peppers raw years ago.) The hotter the better.
I’m a total spice wimp, and while I do like a little spice (and love Vietnamese and Thai food), I react to any spice at all, so I always have to order the most mild versions. And can’t even touch a habanero much less eat one!
One of my friends is a super taster, and avoids meals with broccoli in them, because it tastes like sulfur to him. My palate is thankfully not so discerning, and I tolerate a much wider range of foods and cooking styles. (When not too spicy as already mentioned.) This despite being a so-called “picky” eater growing up. My palate really blossomed and developed in college and I ultimately became a bit of a foodie. But not all can or will. And this is okay. But others need as much spice and variety as they can get. We all vary.
Some people can’t stand the texture of some food types, further limiting their food choices, even if it tastes okay to them. This isn’t a choice. It’s their neurology. They are not being picky. Others may have actual physiological issues helping to make some food types and textures unappealing. I know of one child who can’t eat lettuce- they don’t have a proper swallowing reflex, and it tends to get stuck. So, yet another reason that isn’t just them “being picky”. But you may not know why they are rejecting lettuce, and think you just need to force them to “eat their vegetables”. (This would be a bad idea.)
Some people are lucky and can swallow large horse pills like me, whee. Others cannot for the reasons mentioned above and more. Check your privilege with me if you’re one of the former.
Some people metabolize their medications really quickly, requiring either much more or slower acting versions. Others are slow metabolizers, and have to take care that they don’t over-accumulate the same medication in their systems in order to get the same effect or benefit. Sometimes medications can cause changes in this rate of drug or toxin metabolism.
The bummer is, no one – but in particular our doctors – can tell which you are just by looking at you. So when they prescribe something at a certain rate, it may be too much for you, too little, or, for a lucky few, just right. (Dosing is based on averages, usually in adults after all.) It’s really well and truly a crap-shoot currently. Although pharmacogenetic testing may help.
Some benefit from SSRIs and couldn’t live without them. Others develop Serotonin Syndrome (a real thing caused by excess serotonin in your system, look into it) on even low amounts, and can’t live with them. Others are somewhere in the middle. And some of us got no benefit or effects at all.
Some people react to corn, even though they are not technically “allergic”, so will react to the cheaper form of Vitamin C called ascorbic acid which is corn based. Others do not. Again, you can’t tell just by looking at someone outside of muscle testing which few care to do. (Hint: if you emit whole corn kernels in your stool, you are probably sensitive to corn.)
Some also develop kidney stones if they even look at ascorbic acid found in cheap Vitamin C tablets. (One friend with vEDS is this way.) Others (like me) can take a lot (6000/day for years) and not develop any stones.
Some can eat pineapple, others cannot. Some can handle perfumes and scents and love to apply them heavily. Others (raises hand), cannot and get migraines.
Again, you can’t tell just by looking at us though, who is going to have that problem, right?
No group is a monolith!
Some people are coordinated, some are not. (I started off quite clumsy and uncoordinated, but tightened up with the help of a few years of synchronized swimming from ages 9-13.) Some will do better with some physical therapy, but others will always struggle due to dyspraxia and or hypermobility. It’s just how they are wired.
Some of us have good interoception – that is, the ability to feel internal sensations. E.g. hunger, fullness (satiety), the need to vomit, the need to pee or have a bowel movement, our temperature, or anything else. Others do not, through no fault of their own! Meaning: no amount of trying to force toilet training etc. will change their inability to control their internal signals and sometimes muscles. Stop shaming folks. Just support us.
Some of us are hyperverbal and talk up a storm, while others speak little, if at all, or very slowly if at all, but can still understand speech they hear just fine even if the rest of the world can’t easily tell. (The term for this is non-speaking. Non-verbal implies no ability to parse spoken language at all.) The former need to give the latter folks a chance sometimes. (Myself included.) Truly. Some of us can really monopolize the floor and really need to take a seat now and then. Speaking – no pun intended – from experience here.
Some people rock (are good) at math(s). Others suck. Some are in the middle (me). All can be autistic. Or not.
Some people can see an extreme amount of detail, down to a single pixel on a computer screen. (My late friend Rick.) Others cannot. (Me. I’m good, but not that good.) Others have vision-impairment even with corrective lenses. (Keratoconus, diplopia, more.) Others are dyslexic despite excellent vision. But you can’t usually tell by looking at us minus our glasses of course.
Some can hear just fine, but struggle with processing what they hear even so. Others can process what the hear just fine, but are hard of hearing or deaf. Both may struggle to communicate with allistics and hearing speakers. Others hear and process just fine and may tend to dominate conversations.
(If, like me, you don’t think you know anyone who fits some of the above descriptions, check your hearing and speaking privilege with me. We don’t tend to run in the same circles as deaf, apraxic or Hard of Hearing folk, since you and I will tend to dominate any spaces we are in.)
Some people are synesthetes and can see colors for tastes (or vice-versa, taste colors), and other interesting sensory combinations. But not all. Others can see auras and energy fields. But not all.
Some of us are very literal thinkers most of the time. Others of us have also mastered the art of euphemism and allegory and satire sometimes, even to an extreme. (Raises hand. I’ve been studying you lot for decades now, smile. And I’ve grown bored with the English language in its most common form, so I resort to metaphors and euphemisms to spice things up a lot. Oops – just did it again!)
Some of us love art and music as well as or instead of the sciences. Some can make photo realistic drawings, others like me can’t draw our way out of a paper bag (euphemism).
Some of us are super graceful talented dancers of all types. Others of us can barely lurch to the toilet or need wheelchairs.
Some can play and win easily at chess. Others enter a fugue state of indecision and cannot. (Me.)
Some people are “shouty” and loud when they speak without realizing it. Others speak quite softly and have to work to speak up. (Me.) Others are “just right”. (Lucky dogs.)
Some people with EDS or HSD have stretchy skin. Others with EDS or HSD do not. (It’s not a universal trait, just a stereotyped one chosen for the diagnostic criteria, and easy low-hanging diagnostic fruit, so to speak.)
Some are thin, but others are fat, some even quite fat thanks to co-occurring lipedema.
Some can lose weight easily, others, not so much. You can’t see our thyroid conditions usually after all (goiters excepted), so you don’t know not only how my TSH is, but, even if it’s fine, you don’t know how well my liver is converting T4 to T3, the truly useable form our bodies need. (Point being: you can be hypothyroid even with a “normal” TSH if you’re having liver trouble. But again, they can’t tell just by looking at you – or even just your TSH.)
Some of us are short and fat. Others tall and fat. Others tall and skinny. Others short and skinny. Others in between and every variation thereupon.
There is no single EDS or HSD body “type”, even if there are some traits common to some particular subsets. (E.g. the current diagnostic criteria are currently based mostly on thinner white cis-het women with a Marfanoid habitus.) Ditto for autism. (Diagnostic criteria are currently based on mostly nerdy white cishet boys and men.)
Both fall short. Anyone who tries to tell you there is a “body type”for either EDS or autism is misleading you and promoting a stereotyped subset of either group.
Not all autistics are hypermobile. Not all hypermobile people are autistic. (As far as we know.)
Some people want a cure, others do not. Like not even at all. No, not even for EDS!
Some people want to know how to prevent EDS. Others do not. Ditto autism.
Some want children, others of us do not. This is a totally personal choice and is nobody else’s business.
Some people feel autism is a disability, others do not. Ditto Ehlers-Danlos/HSD.
Some people uphold the medical model of disability. Others uphold the social model of disability. And I’m now a keen fan of a new “holistic model” I just read about by @Autistitic on Twitter, but which I can’t find the link for just now, sorry. (Essentially, a combo of both of the above, with room to grow if memory serves.)
Some people score high on intelligence tests, but struggle to make friends. Some score lower but are better able to make and keep friends.
Others fail or score poorly on IQ tests, but, when given the chance like Joao here, show that they are indeed quite intelligent. Ido Kedar is another great non-speaking autistic author, among many more. But most people infantilized and wrote both these young men off based on appearances at first.
Some people believe vitamins and other nutritional supplements work. Others do not.
Some people with good digestion and the right chemistry benefit from supplements (me), others aren’t so lucky even if they believe in them, and have to get them via shots, IVs or transdermally. Mileage always varies, even in those who believe in supplements.
Not all can afford supplements even if we do benefit. Not all can even afford housing. Much less housing with our own yard, and car park.
Not all are married, or have a long term partner (married or not).
Not all are alloromanticcishet “normies” (heteronormative men or women attracted to the opposite sex as most represented in media). Not all are any other binary either – some folks are gender fluid, and literally feel like a different gender not only every day, but throughout a given day. Some are asexual (ace). Others aromantic (aro). (Not romantically attracted to others.) Those of us who happen to match the socially accepted and most promoted “norm” need to check our privilege and allow our kin to exist too.
Not all are white. We come in all races and ethnicities from all over the world, truly. In every beautiful shade of human you can find. EDS and autism do not discriminate. Just some people do.
Side note: Black people DO feel pain. Plenty of it. The racist stereotype in western medicine that Black people do not feel much or any pain is a toxic racist myth that needs to die yesterday. Please stop perpetuating it. You are causing loads of harm, thank you.
Are you starting to get the picture?
We are not a monolith.
Not all EDS and HSD patients are the same, nor all autistics or folks with ADHD, MCAS or anything else. Nor any group anywhere for that matter. There will be exceptions to most rules. And someone will always break the mold or stereotype. And need to be allowed to exist.
And just like you don’t like feeling left out or behind, or forgotten, neither does anyone else.
So, I highly recommend making fewer proclamations in life, and more observations. E.g., “Everyone talks a lot!” (Or fast.) Well, okay, in my highly educated western better-masking and passing AuDHD community that may be true, especially since folks with ADHD tend to take over the room.
It’s probably not true for our non-speaking colleagues who need letter boards or other AAC to communicate. Or rather, they might be highly verbose if they could be, but their disability and/or lack of support doesn’t allow them to show or tell us much, or not yet. (Though some are thankfully breaking out and getting published, slowly but surely, yay. Keep it coming!)
And/or, we’re so busy talking over everybody else, they couldn’t if they tried, because… well, hell, it’s hard even for hyperverbal me to get a word in edgewise with my ADHD friends sometimes! (Truly. Please start giving other folks a chance to speak, thanks.)
I think birds of a feather flock together, making it easy for one subset to rarely or never cross paths with the other.
“We’re all highly creative artists and musicians.” Uhm, no, many are, but not all, no.
“We’re all techies and nerds and geeks”. Uhm, no, many are, but not all, no. And this doesn’t preclude also being very artistic or otherwise creative.
“We’re all photographers and naturalists”. Again, no. Not all.
I get it. We all want a tribe, and to feel we belong. And that’s not inherently bad. Just don’t project yourself onto all members of your tribe, nor project your tribe onto everyone else.
Allow for differences– of opinion, style, needs and ways of being. Both between different people. But even from day to day. (Both autism and EDS are highly variable in their functional levels from day to day, even hour to hour.) Allow for variable disability. And, exceptions to your rules.
The sooner we wrap our collective brains around this notion, the better off we will all be IMHO.