why isn't there much info about coathanger pain with POTS?? or at least why is this not more common knowledge? i don't think i've ever seen anyone talking about this. every time i've asked about it (+other POTS symptoms it comes with in my case) in chronic illness spaces people have suggested everything from fibro, MCAS, a CFS leak, a herniated disc, CCI, etc. but nobody ever said "coathanger pain."
but dysautonomia international posted a silly little graphic on their instagram and now i have my answers to why i was having a ton of symptoms that did suggest a herniated disc but there were no signs of disc herniation upon getting an MRI and for some reason it was triggered by working morning shift/having to be upright for a long time in the mornings. i would get excruciating, searing pain that feels pike a knife has been shoved into the base of my neck and the whole of my upper back would have this icy burning sensation. accompanied by me losing the ability to think straight, losing my coordination, and slurring my speech. i left work crying one morning because of how much pain i was in before i eventually came to the conclusion i couldn't do morning shifts.
that's coathanger pain. my spine is okay (i think...for now, anyway.) according to The Stuff they don't know what causes coathanger pain necessarily but they theorize it has to do with reduced blood flow to those areas of the body (which would track since POTS tends to involve blood pooling in the extremities and such.) it's also not exclusive to POTS and is associated with dysautonomia or orthostatic intolerance in general i think.
One example of the power of obtaining the autonomic history is the Coat Hanger Phenomenon. In people who have neurogenic orthostatic hypotension or orthostatic intolerance, they can complain of pain, or like a charley horse kind of sensation, in the back of the neck and shoulder areas in the distribution that’s like a coat hanger. And it goes away when the person is lying down. That’s an important symptom. And the way I explain it is that the muscles that control your head are tonically active, otherwise your head be falling down all the time. Tonically active. That means they’re using up oxygenated blood all the time. Well suppose you’re in a critical situation where there’s a drop in blood flow at the delivery of oxygenated blood to the head. In that situation these muscles are not getting enough oxygenated blood. They’re tonically active, so they’re producing lactic acid and you get a charley horse, just like you’d have a cramp anywhere else. It’s a skeletal muscle thing. So, I think when somebody complains of Coat Hanger Phenomenon, that’s a very important sign or symptom. And that is not invented. That’s a real phenomenon. It points to ischemia to the skeletal muscle holding your head up.
(Dr. Goldstein, The Dysautonomia Project)
worsening cognitive dysfunction, slurred speech, and worsening coordination because blood's not getting to my brain. bordering on emergency-room-level pain in my upper back and neck because not enough blood is getting to those parts of my body. got it.
anyway, i legit have NEVER seen this discussed until recently and i thought i should share.
every time anyone talks about liberation for the intellectually disabled in any real material way (i.e. creating plain-language educational resources accessible to adults reading on a first-grade level, detangling literacy from basic requirements to participate in society, destigmatizing inability to benefit from pedagogy, criticizing the construct of financial literacy as a necessary skill, etc etc etc), some chud comes along calling it "anti-intellectualism" and blabbing about how you're a morally inferior person if you only read middle-grade novels for fun, i'm so tired and we are never making it out
can we have a conversation about how abysmal the state of "handicapped" parking spaces are in some places? ive been to two separate places in the last week that labeled a normal spot as an accessible one and just painted it blue. ive been to hospitals and doctors offices that had like 3 spots total. sometimes they're even more inconvenient than the regular spots because they were put somewhere stupid just to get away with the bare minimum. this sucks
Disclaimer: Though I have been using a cane for 6 years, I am not a doctor, nor am I by any means an expert. This guide is true to my experience, but there are as many ways to use a cane as there are cane users!
This guide will not include: White canes for blindness, crutches, walkers, or wheelchairs as I have no personal experience with these.
This is meant to be a general guide to get you started and avoid some common mishaps/misconceptions, but you absolutely should continue to do your own research outside of this guide!
The biggest recurring problem I've seen is using the cane on the wrong side. The cane goes on the opposite side of the pain! If your character has even-sided pain or needs it for balance/weakness, then use the cane in the non-dominant hand to keep the dominant hand free. Some cane users also switch sides to give their arm a rest!
A cane takes about 20% of your weight off the opposite leg. It should fit within your natural gait and become something of an extension of your body. If you need more weight off than 20%, then crutches, a walker, or a wheelchair is needed.
Putting more pressure on the cane, using it on the wrong side, or having it at the wrong height will make it less effective, and can cause long term damage to your body from improper pressure and posture. (Hugh Laurie genuinely hurt his body from years of using a cane wrong on House!)
(an animated GIF of a cane matching the natural walking gait. It turns red when pressure is placed on it.)
When going up and down stairs, there is an ideal standard: You want to use the handrail and the cane at the same time, or prioritize the handrail if it's only on one side. When going up stairs you lead with your good leg and follow with the cane and hurt leg together. When going down stairs you lead with the cane, then the good leg, and THEN the leg that needs help.
Realistically though, many people don't move out of the way for cane users to access the railing, many stairs don't have railings, and many are wet, rusty, or generally not ideal to grip.
In these cases, if you have a friend nearby, holding on to them is a good idea. Or, take it one step at a time carefully if you're alone.
Now we come to a very common mistake I see... Using fashion canes for medical use!
(These are 4 broad shapes, but there is INCREDIBLE variation in cane handles. Research heavily what will be best for your character's specific needs!)
The handle is the contact point for all the weight you're putting on your cane, and that pressure is being put onto your hand, wrist, and shoulder. So the shape is very important for long term use!
Knob handles (and very decorative handles) are not used for medical use for this reason. It adds extra stress to the body and can damage your hand to put constant pressure onto these painful shapes.
The weight of a cane is also incredibly important, as a heavier cane will cause wear on your body much faster. When you're using it all day, it gets heavy fast! If your character struggles with weakness, then they won't want a heavy cane if they can help it!
This is also part of why sword canes aren't usually very viable for medical use (along with them usually being knob handles) is that swords are extra weight!
However, a small knife or perhaps a retractable blade hidden within the base might be viable even for weak characters.
Bases have a lot of variability as well, and the modern standard is generally adjustable bases. Adjustable canes are very handy if your character regularly changes shoe height, for instance (gotta keep the height at your hip!)
Canes help on most terrain with their standard base and structure. But for some terrain, you might want a different base, or to forego the cane entirely! This article covers it pretty well.
Many cane users decorate their canes! Stickers are incredibly common, and painting canes is relatively common as well! You'll also see people replacing the standard wrist strap with a personalized one, or even adding a small charm to the ring the strap connects to. (nothing too large, or it gets annoying as the cane is swinging around everywhere)
(my canes, for reference)
If your character uses a cane full time, then they might also have multiple canes that look different aesthetically to match their outfits!
When it comes to practical things outside of the cane, you reasonably only have one hand available while it's being used. Many people will hook their cane onto their arm or let it dangle on the strap (if they have one) while using their cane arm, but it's often significantly less convenient than 2 hands. But, if you need 2 hands, then it's either setting the cane down or letting it hang!
For this reason, optimizing one handed use is ideal! Keeping bags/items on the side of your free hand helps keep your items accessible.
When sitting, the cane either leans against a wall or table, goes under the chair, or hooks onto the back of the chair. (It often falls when hanging off of a chair, in my experience)
When getting up, the user will either use their cane to help them balance/support as they stand, or get up and then grab their cane. This depends on what it's being used for (balance vs pain when walking, for instance!)
That's everything I can think of for now. Thank you for reading my long-but-absolutely-not-comprehensive list of things to keep in mind when writing or drawing a cane user!
Happy disability pride month! Go forth and make more characters use canes!!!
I'm working on my graduate thesis at Delta State University (fear the Fighting Okra!) and I'm looking adults with disabilities to take part in an online survey. The survey will probably take 15-20 minutes to complete and it's about how social friction is perceived in interactions between disabled and able-bodied people. So if you're 18 or older and self-identify as disabled or partially-disabled, I would love to hear from you on the survey:
"Let Me Get That For You": Analyzing Frictional Situations in a Disability Context (via Google Forms)
This research survey has received approval (IRB number 2025-037) from Delta State's Institutional Review Board. It will be live and accepting responses for the next 4-6 weeks depending on the number of responses received. But there's also something for you!
The survey itself is anonymous, though you can optionally enter a drawing for an Amazon gift card at the end of the survey. I can't buy a gift card for every response (as much as I would like to be able to do that) but I can give away a token of appreciation to a randomly selected portion of you. Email addresses are collected only for those who wish to participate in the raffle; any collected emails are deleted after each weekly drawing and only used to contact whoever won that week.
If you have any questions about the project, feel free to send me a message on tumblr!
ayo this pretty cool
[id: active style manual wheelchair with frame made of rectangle wood planks screwed together. end id]
as we know active type wheelchair very expensive, & repair need buy from specific medical manufacturer n take very long time. someone (who wheelchair user themself of near 40 years) made open source active manual wheelchair where most (if not all?) material from commercial easy get materials! wood, plastic, pvc pipe, & those commercial aluminum square pipe things. n they put guide made them yourself in link for anyone want try make
this video from their instagram show their wood frame wheelchair actually pretty durable, include clip from everyday use & even drop wheelchair all over place (basically imagine what airline do to them…) - n wheelchair stay in tact! n even if some part break - it easy change because wood planks all screwed together so you just buy wood plank & unscrew & rescrew.
not great for people w advanced seating positioning needs probably (think if only problem is easy butt pressure sore, maybe can still use this + supportive cushion but think beyond that it get hard). but if like you don’t need those things then maybe fun project?
have not use for self so can’t actually talk about experience but it look pretty cool
A friend of mine recently broke her foot.
She's a wonderful friend. A deeply kind and considerate person. One of the first things she did after getting out of the hospital was to apologize to me.
"I'm so sorry. I had no idea."
"Hun, you're the one with the broken foot. What are you talking about?"
"I had no idea it was so hard for you all the time... There are stairs everywhere... Even in places where there's supposed to be a lift. And often the lift doesn't work. And there's pavement where my crutches keep getting stuck.... I'm so tired because walking like this isn't the same but there are no benches where I can rest....
You tried to explain and I thought I understood.... But I really had no idea. And this is what it's like for you ALL THE TIME.... I'm so so so sorry"
God how I cried.
I think the reason a lot of leftists struggle with disability justice is that they haven't moved past the concept that discrimination isn't bad because it's objectively "wrong." yes, sexists are objectively wrong when they try to claim women are dumber than men. yes, antisemites are objectively wrong that jewish people are inherently greedy and run the state. yes, racists are wrong when they try to claim that white people are the superior race. and so on.
but then with disabled people, there are a lot of objective truths to the discrimination we face. people with IDs/LDs do fall behind and struggle with certain concepts. physically disabled people are often weaker and less capable of performing demanding tasks than able bodied people. many of us with mental illnesses are more reckless and less responsible. a lot of us are dependent on others and do not contribute much "worth".
and guess what? disabled people still deserve a place in the world. disabled people still deserve the supports they need. because they are people, and that should be enough to support them and believe they deserve a place at the table.
if your only rebuttal against discrimination is its objective inaccuracies, you are meeting bigots where they are at. you are validating the very concept that if and when people are truly incapable of being equal to the majority, that means they are worth less. this causes some leftists to then try to deny the objective realities of disabled people and/or become ableist themselves.
your rallying behind marginalized groups should start and end with the fact that people are completely worthy of life and equity, because they are fellow human beings and that should, frankly, be enough.
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