Why Else EDS is considered rare November 2026

I forgot that I only wrote about this over on Medium, where I started writing too a few years ago. I’ve made a whopping $0.87 there so far in oh, five years? Once again, not getting rich, not even meeting my needs, while others get more of the credit and glory. But I digress.

Another reason EDS is considered so rare, whatever form (including hEDS/HSD), is because a lot of the people affected by it are very poor. Indeed, some of us are outright homeless.

But I never see The Ehlers-Danlos Society or anyone else for that matter addressing this besides myself. And that needs to change.

How do I know? Because, I started serving my local houseless neighbors in earnest in the summer of 2019, just before the COVID pandemic hit. I had come into extra food through a local gleaning program, and it was way more than I could use, and I’m a good cook so… I went ahead and tried cooking for my neighbors. And it was an instant hit. In no small part because I provide kind, respectful tent-side service.

I merely asked in a friendly light voice: “Anybody home and hungry?” And sometimes I’d get an answer, sometimes I would not. I did not pester, because if folks are sleeping, it’s best to let them sleep: it’s very hard to sleep well outside. But most folks responded with “Yeah, whaddya got?” and I’d share, and some were happy to partake, others not. No one told me to fuck off. Because I wasn’t preaching, or judging. Literally, just offering some food, with no strings attached. I was also never offended if someone didn’t want what I’m offering – we all have preferences and as you should well know, often dietary restrictions too. And everyone has agency and free will. And I don’t have a martyr complex.

I quickly learned that blankets, socks and underwear and TP were super needed and welcome also, and began adding some to my rounds. And I slowly settled into a weekly route in my inner southeast Portland, Oregon neighborhood near a church that served folks M-F, but not on weekends. My friend R there asked me if I could help fill that gap on Saturdays, and so I did. Although I sometimes varied things up and served farther afield during severe weather events. (Yes, I got sick a lot from extreme weather, pollution and smoke. But I at least got to go home to my safe clean apartment afterwards.)

I got to know several of the regulars in due course, befriending several, and watched a couple of them get housed, and helped a few others start to. A generous housed friend would buy me cartons and plasticware and socks and handwarmers and water to hand out as well. And in that process, I noticed the majority I met had signs of hypermobility disorders (hEDS and EDS), as well as MCAS and POTS and other dysautonomia in some cases. (One friend has all the signs of Tenascin-X deficiency, and I did properly suspect she had mastocytosis which has since been diagnosed. She also got housed 2 years ago. But I doubt they’ll ever diagnose her EDS. She’s trying to just survive her masto for now.)

But, I also quickly learned that when you’re homeless, doctors will barely look at you or treat you even if you don’t use any drugs. Seriously. They treat and street as fast as possible. It’s worse if you do drugs – they’ve outright stolen some of my friends’ belongings, and mistreated them badly. (One lost his thumb to this.) I also started to get mistreated by proxy, and am afraid to see any more doctors now because I’ve been so bullied for my work.

So you’re lucky to have your most emergent issue addressed, usually only if you’re blue or bleeding. Otherwise, you’re treated and streeted as fast as possible with no support, resources, aftercare or housing. Period. Just get out of our sight, stat, thanks.

No one will look at the whole person in front of them, recognize their neurodivergence, with very real chronic pain and fatigue driving some of the drug use, among the many other issues we all know so well. Everyone just wants them out of their sight as quickly as possible. It’s the rare person like myself and a handful of service providers who truly do care. And there are a LOT of predators in medicine and the social services industry who also rob these folks and lead them down fake paperwork alleys in bureaucratic circles so they never get housed. It’s sick. If you had any idea who much grift and corruption there was, you’d be appalled.

No, we all just quickly judge folks and blame the victims. Look, I get it – I served some of the roughest people out there. But even the outright assholes treated me kindly and said thanks when I served them food with no questions asked. Hunger doesn’t discriminate. And neither do I. One even told me I stopped him from stealing to eat one night. Others said the same. Many had just been swept and lost everything they owned, setting them back yet again. (You try navigating bureaucracy without a phone or ID. I dare you. It’s hard to do even when housed!)

But I also saw some of the roughest folks get housed, or choose to seek housing before I stopped serving two years ago. (Like yes, I personally saw B outside on his very last night after over 15 years – it was an honor. He swore he’d never go inside! All I did was hold space for him, talking to him like he was a human. He in turn was always ready to fireman carry me to the SJAC if I was in anaphylaxis from the cold and smoke! A fair trade. Oh the stories he could tell!)

Never in the history of humanity has withholding food and shelter made someone a better person. Think about it: if they’re an asshole (true NPD, sociopath or psychopath etc), they’re not going to take kindly to that, and will respond poorly/in kind. Sure, some belong in jail and we need to do better about that. If they’re not an asshole, but just beaten up (or down), and highly traumatized as a majority are, sweeping them around and treating them like shit just beats them down further and makes them less likely to want to lift themselves up – or even be able to. It’s truly violent and sick what we do to our homeless neighbors.

But I digress. I know for a fact, the people who are running things in medicine and TEDS have never even considered the homeless in the possible zebra count. Because not one person besides me has spoken about it. I even helped house a fellow Oregon zebra I found begging for mutual aid just to eat on Twitter (now X) two years ago. I followed her carefully at first, and then realized she had all the signs of EDS, if not outright Osteogenesis Imperfecta. (Her spine was crumbling, literally. And still is.) Trust me, if you knew her case, you’d be shocked how much she has survived. And she was stuck living in a van two years ago facing double lumbar spinal fusion~!! (Thank you everyone who helped me get her housed, you all rock!) No, you just judge everyone first, and don’t even ask questions later, sigh.

No, I don’t have any studies or hard numbers to give you. But from my personal experience serving for 7 years, I suspect well over half of the homeless are disabled for undiagnosed medical reasons, and that a majority of those are from undiagnosed connective tissue disorders. (Not just EDS! Look for Loeys-Dietz, Marfans and OI too remember.) I suspect the majority are neurodivergent, mostly ADHD and or autistic (AuDHD). Many are also queer or trans and were kicked out of their homes. Many aged out of foster care. Many women were hiding from violent exes, some running for their lives. (R lived under a tarp, refusing a tent, lest she be spotted. I almost missed her a few times while trying to serve her dinner!)

But no one cares about them. Of course not. They’re smelly and rough, not shiny, like potential charity donors. So who cares. You have conferences to lead and doctors to see. Who cares about the poorest and most afflicted among us? They’re just scroungers after all, right? Let’s keep jetting around the world and ignoring them. And calling EDS rare, so we remain precious.

Gee, have you ever asked yourself why they aren’t doing better? And why so few get diagnosed?

Because I have.

If you’d like to support me either one time or ongoing, I can really use it here. I barely make rent currently, though my new photo notecard business is slowly taking off. Over 80% of my sales go back into the business (buying more cardstock and ink, sigh). So I’m not really making it yet. (I have some plans to improve that, don’t worry. It’s just hard when you’re disabled and alone.)

EDS and/or whatever else we end up calling hED/HSD on December 2nd, 2026 is really truly not rare, just rarely diagnosed. Truly. And continuing to call it rare keeps putting doctors off the scent. Please check your vast privilege, and stop doing this. Thank you. And go meet your homeless neighbors. They really don’t bite, and some can be quite fun and funny to hang with. You might make some good friends. And help some fellow zebras. I have. Just lead with love, okay? Leave the judgment at home. Thank you.