I became physically disabled when I was young; during winter 2010-2011 and my second year of college, the first pandemic of the century would occur. I caught swine flu. I would be ill for almost four straight months, and after that, never the same again physiologically speaking. I developed POTS (Postural Orthostatic Tachycardia Syndrome), a type of dysautonomia (dysfunction of the autonomic nervous system, autonomic processes like heart rate, breathing, sleep, digestion, etc), as well as many symptoms that patients with MECFS and long COVID also share, and issues with sleep, concentration, and digestion. I already had some chronic pain, which was increased tenfold. As I got older, conditions that had always been there became more prominent (my struggles with ADHD and what I believe to be EDS, primarily hypermobility).
I went from a pretty active student with a 3.6 GPA, to medically withdrawing in my third year, with the encouragement of both my doctor and a psychiatrist. I would be plunged into a crash course on disability and ableism, and learn much more about those things (and my disabilities) than I ever could have in three years of college. Ever since I got sick, I’ve constantly had to justify not only my absence at school and diminishing employability, but my very existence, every single choice I make, every penny I spend; to the government, to doctors, to agencies meant to help me, to family, friends, and peers.
Very often, people insist that I am “too young” to be disabled, or to need a mobility aid. In addition to incorrectly conflating disability with old age, there is an underlying (and sometimes overt) indignation about my inability to work; I am too young to retire, therefore, my disability must not be legitimate. (Oft unsaid but even louder still: 'I still have to go to work, and I will have to wait until I’m old to retire. Why should you get to quit so soon? Wouldn’t we all like to just take the easy way out, and call in sick to work forever?')
Much to the contrary of the disbelievers, 25% of the American population is disabled, and those are only the ones who call themselves the dreaded D-word; many people don’t consider themselves "disabled" due to the stigma, even though they absolutely meet the definition. To boot, nearly 60% of Americans have a chronic illness.
In reality, having a disability is exceedingly common. Disability is a natural state that will eventually happen to ALL organisms who live long enough. Half of all disabled people are under 65, and you are far more likely to be disabled if you’re part of an underprivileged group (hi, it’s me, queermo supreme).
People tend to associate disability with old age and death out of their own fear of becoming disabled, or watching someone they love becoming disabled. Life is already hard enough when you have access to your whole body, all day, for whatever you need it to do; in fact, most people tend to place most of their own self-worth on what they do for work or material skills they possess. Surely the misery and suffering that would ensue if you lost those abilities would be unbearable?
It’s true that being disabled (especially in an abled world) comes with a fair amount of grief; but even in some of the most extreme cases, life is worth living even with pain. You cannot avoid it. And you already admitted it yourself— life contains multitudes of struggle, anyway. I may be playing on hard mode, but what else is new? In equal measure with the lowest of lows come the highest of highs. Grief is the price we pay for love, not in a capitalistic cost-analysis sort of way, but in the 'every action has an equal and opposite reaction' kind of way. Such is life.
There is a lot you may never understand about disability as an abled person-- or even about other people's disabilities that are different from your own-- but you don't have to understand someone completely to love and care for them, or to show them empathy and respect.
On this page, I’ll be talking a bit more about misconceptions of disability and how ableism affects my life, as well as some cold hard facts & research about just how prevalent disability truly is.
Relatedly, I’ll also talk a bit (maybe on another page lol) about some of the conditions I have, such as POTS and MALS (median arcuate ligament syndrome), as well as how to listen to your body and surviving & finding meaning when you’re in pain all the time.
Please do feel free to get in touch with me if you find yourself with more questions, or if you find any errors/broken links (hit up that cbox on my home page, I love that).
POTS is a dysautonomic disorder that looks like a cardiovascular problem. "Dysautonomia" is relating to the autonomic nervous system (ANS). Blood pressure and heart rate are just some of the things your ANS usually controls-- as the name suggests-- autonomously, without having to think about it.
In dysautonomic conditions like POTS, your ANS doesn't work right, so these automatic processes (circulation and heart rate, breathing, body temperature, digestion, etc) are NOT properly regulated. This manifests in a lot of different ways, but primarily with changes in posture. Have you ever stood up too fast and accidentally seen into the 5th dimension? That happens to me every time I sit or stand up! Blood pressure don't work right.
I actually think this bit from the Liquid IV website says it better than I could:
So, it turns out your whole body needs blood all of the time, and not just some parts of the body some of the time. Ah. Damn.
In many fewer words, POTS means that whenever I'm upright, my brain isn't getting enough blood, and I pass out a lot. Among other things.
POTS is characterized by a 30+ jump in heart rate upon standing. (Because your blood pressure isn't adjusting for gravity, your heart rate increases to compensate, and then beats TOO fast, and you lose consciousness.) Being upright at ALL- even just in a chair- will keep my heart rate over 100bpm for hours on end. My heart rate frequently tops 150 when simply climbing the stairs. I've passed out from merely standing at the sink.
Jessica Kellgren-Fozard explains it really well, too, in this video about how much time she spends on the floor (12m). Sorry, I'm still learning how to properly embed YouTube videos, this wasn't a thing when I first started coding.
Aside from blackouts, my worst symptoms from POTS are fatigue, nausea, chronic pain, brain fog, temperature regulation issues, and tachycardia. I can spend a couple of hours upright (working on something or driving, for example) but after a certain point I become too fatigued and mentally foggy to concentrate, and I have to go lie down. Lying down is the #1 best way to fight POTS, plain and simple.
As mentioned in Jessica's video, POTS is related to the flight-or-fight response. Vasovagal presyncope (or passing out from getting "excited") is also a thing. I don't even have to stand up too fast or overexert myself; I can literally just get worked up emotionally and make my heart rate spike to blackout inducing levels, like a damn fainting goat. ️
The #1 first response for my POTS related issues, verified by my cardiologist? GET HORIZONTAL. Your brain needs oxygen. It gets that through your blood. If I'm starting to really drag ass, 9/10 times it's just because I've been upright too long, and I need to put the blood back in my head (i.e. lie down for about 20 mins).
#2 is WATER and SALT INTAKE. I drink 2-3L of (salted) water per day MINIMUM, this does not include other beverages I consume. Something like 80% of your fluid intake should be electrolyte solutions. POTS patients need VASTLY more sodium than the average human; my cardiologist told me I need 8 to 12 grams of sodium PER DAY for my own case. I also drink Liquid IVs and eat salty snacks.
Staying on top of food & water intake has a BIG impact on POTS; when I eat less, my blood sugar and sodium levels get so fucked up so quickly, it only takes me a few hours of having not eaten to severely deteriorate.
#3 is COMMUNITY. I should probably actually put this as #1, because everything I learned about POTS came from other POTSies and never from a doctor. But if you are new to this awareness of your condition and you need resources, FIND PEOPLE who are talking about it! Check out Dysautonomia International and their resources, join a Facebook group or a forum, find POTS bloggers or youtubers or tiktokkers to follow, find the folks making zines on Instagram, or if you're still on twitter (RIP) there are hashtags like #NEISvoid for talking about life with chronic problems.
Talking to other people with your condition will give you a MUCH more well-rounded view of what it can look like, and more importantly, how you can adjust to living with it. Despite all their knowledge, doctors do not usually have to live with the realities of the things they treat, and they have lots of "blind spots" about it as a result. They can't tell you how to comfortably deal with a dysauto crash in your own home; other POTSies can. I just simply cannot overstate how much you can gain from talking to other patients. It is crucial, I would not be surviving without the help of other chronically ill folks and everything they share.
#4 is REGIMEN. There are more exercise regimens and modes of physical therapy coming out for POTS lately, such as the CHOP protocol, which utilizes an extremely graded scale of activity beginning with reclined exercises. (Being upright and standing still is worse than being upright and moving- your legs can act as a 2nd heart and pump blood back up to your head, as long as they are moving.)
Again, this is how I prioritize my own care. But do check out Dysautonomia International if you have any more digging to do about POTS and dysautonomia in general. There are TONS of resources there.
I have had problems with my stomach since I was 9 years old. When I was 21, I started vomiting every day for almost a year, and wound up in the ER several times. For 10 years no one could find anything; I was told repeatedly "It's just anxiety" or "It's IBS." Blood tests, endoscopies, colonoscopies, gastric emptying scans-- they all came back with normal results.
Because the issue isn't my stomach.
The issue is the blood flow to my stomach.
MALS is a vascular compression that mimics a GI syndrome; my abdominal organs do not receive enough blood. In MALS anatomies, the median arcuate ligament is not located where it should be, pinching the nerves and vessels at the celiac artery below it. My own arteries showed > 70% stenosis on my celiac doppler ultrasounds at the time of diagnosis (Spring 2022).
MALS is without a doubt the most disabling problem that I have, and it's scope and severity were grossly undersold to me by the doctors who diagnosed me with it.
MALS is constant pain. Constant, never-ending, always-present pain and nausea. MALS is spending every waking moment catering to my stomach, and winding up in the ER routinely when I can't; doing everything from constantly adjusting my posture to sipping applesauce through a straw to actively fighting down the urge to vomit for hours on end. It's taking snacks, electrolytes, and a barf bucket with me everywhere I ever go, needing a bag of supplies like a baby would, just to meet up with friends for a bit.
We get what we call "MALS attacks." When it happens, my stomach & other organs aren't getting enough blood to perform their functions. Effectively a heart attack of the stomach. It is exceedingly, maddeningly painful, usually manifesting as unstoppable vomiting for hours (or sometimes days) on end, not even being able to keep water down; as well as painful, sharp muscle spasms all around the abdomen and stomach, and often the same headache that comes after eating.
MALS is spending an hour in the kitchen trying to choke down one bite of food before having an earth-shattering panic attack, because I am so fucking hungry and my body will physically not accept food.
Even on good days, MALS is sitting in the kitchen for hours by myself, taking small, infrequent bites, spending more time fighting nausea than tasting my food. MALS is starving of hunger, feeling my body waste away, craving the foods that used to comfort me beyond measure, desperate for anything to stay down. MALS is barely managing a few bites and still getting such a roaring headache afterwards that I have to sleep it off until the next attempt at eating.
Due to the pain and issues with fully digesting things, I am almost never able to eat until I'm sated. I can only eat until the pain outweighs the hunger. A vast majority of my meals only contain a few hundred calories or less, so I eat a bit like a baby bird, taking a few mouthfuls every few hours. If I don't, the hunger catches up fast.
Despite the pain, if I skip meals, I'm far worse off-- the lack of nutrients ultimately makes the POTS worse, and all of my symptoms get more severe. If I skip even one meal, I am vastly more likely to pass out, or injure myself doing something mundane due to weakness.
Plenty of complications can arise from this (not least of all due to the obvious malnutrition, nor the psychological effects). Our vascular systems are complex, and one compression like this often comes with others throughout the body. There's nerve damage from the misplaced ligament (often one of the causes of pain). Chronic lack of blood to the organs and extremeties, as well as pooling, can cause complications of their own (least severe of all, chronic pain). In the MALS groups I've joined, I've heard accounts of fellow members experiencing edema or even aneurysms as a complication of MALS.
Most doctors will tell you this condition is "benign," that it "shouldn't bother you." The very same doctor who diagnosed me told me just three months later that my pain was "too severe" to be MALS and must be something else. (Yeah idek. That one has my other doctors scratching their heads, even.)
If you spend just 1 minute in any MALS support group, you'll hear a vastly different story from the patient side: that MALS is horrifically, indescribably painful, that it is complex and hard to manage, that it has taken our lives away from so many of us.
Surgery is the only way to correct the MALS, as the compression is a structural issue. However.
MALS is poorly understood. Because of it's complex and obscure nature, most doctors are unwilling to treat it. And among those who are willing, there are many who dismiss or don't understand the related complications. For example, your surgeon may perform the MALS release, but not address nerve damage and scarring; they may release the MALS but ignore other compressions in your vascular system, like SMAS; or, worse yet, they may perform the release, have it be "successful" (i.e. your blood flow to normal), but now for some unknown reason, the pain never goes away.
As such, surgery isn't necessarily a magical fix, but a vast majority of the MALS patients who get it seem very glad they did. Many say it 'gave them their life back.'
That said, it's not ideal to wait, either. Ignoring this compression can cause lots of other medical complications down the road. But with the lack of availability and access wrt MALS doctors, some of us are left with no other choice but to try and find effective pain management on our own, as doctors are overwhelmingly not providing this for us.
My own told me it was ok to smoke weed, though, and going by patient accounts, it does seem like cannabis is one of the more effective treatments.
(I also find that POTS and MALS play off of each other quite a lot, so sometimes treating the POTS helps the MALS. Like, if I drink my liquid IV and improve my blood volume a bit, sometimes that actually helps me eat. So there's that.)
Still, many MALS patients end up on a feeding tube when they run out of pain management options.
I have been managing my MALS with thc for the last 8 years or so and I am absolutely certain that I would have already wound up on a feeding tube without it. It's efficacy is starting to wane, but I find that switching methods (between vape / herb / RSO for example) or switching strains does sometimes help. Likewise, a higher CBD/CBN ratio is always better, even 20:1 (though CBD without any THC is useless to me).
I also take omeprazole (keeping reflux in check helps the pain), and take a low dose of amitriptyline for sleep which purportedly helps stomach/nerve pain. I have had a slightly better time eating since starting, but it's hard to say if it's actually helping the pain.
False. Plenty of people are born disabled, or develop disability young in childhood. Lots more experience traumatic events, accidents or surgeries that alter their bodies at all stages of life. Anecdotally, someone in one of my MALS Facebook groups developed their vascular compression after being kicked by a horse! Disability does, however, happen disproportionately to disenfranchised groups, including to children.
A: "Because we are separate people with different bodies and wildly varied life circumstances," primarily. FYI infants typically start to learn they are separate from other people around 7-9 months old, so maybe jot that down.
Listen, I've had about 20 different jobs since I started working at age 15. Sometimes I worked 2 or 3 at once. I have several manners of retail and food service. I have been a janitor. I have worked in an office. Most recently, I did transcripts, freelancing from home as an independent contractor; that was the perfect job, one where I could lie down whenever I wanted and was beholden to no one, and I liked it! and I was SUPER good at it! and it SHOULD have been the thing that sustained me. and I couldn't keep up with that one, either.
The truth is I LIKE working. If the physical pain I'm in was the ONLY barrier I faced to working, I still would be. You can work at weed stores here, for fuck's sake? Why would I not be doing that? smdh. There's also a mushroom factory near here, I bet fascinating stuff goes on in there. I've even fantasized about being a carny, or a sailor on a big freighter, or some other objectively awful terrifying and/or gross job, just for the thrill of imagining a universe where my body could handle it. I WANT to have the satisfaction of a job. I LIKE to do a good job. It feels good to have income, even if none is expendable.
NO ONE has their pick of jobs right now. Coming into that situation with additional stipulations you need met in order to be an employee? That is a fantasy. And that's without delving into the awkward phase of my gender transition that I'm in, lol.
tl;dr YES. I have tried, and that includes all the ~work from home job listings~ you're about to send me from Pennyhoarder.
A: Yeah I actually have. FYI Dieting is a Touchy Subject for me and I prefer to avoid it, so this is probably the only place I'll talk about this.
I actually have tried various diets, and yet, multiple doctors & specialists have confirmed that my diet- and in my fact my STOMACH ITSELF- is not the issue. I don't even have any allergies or food sensitivies, and I am not prediabetic.
Sticking to a strict diet has little effect besides making me eat less, when trying to get more than 500 calories a day in is already a monumental struggle for me so much of the time. MALS restricts my diet already; any diet Further restricting my limited food intake would be dangerous to my health.
While diet changes may be beneficial to others with related comorbidities, I have personally found that, in my case, quantity over quality matters.
any food you WILL eat is better for you, & contains more nutrients, than any food you don't (or can't) eat.
A: So it IS worth mentioning that stress does affect our physiology. I know better than anyone what pushing past your limits and working through burnout does and I can assure you, it won't win you any marathons. There is definitely something to be said for paying close attention to your body, to where you hold your stress, to what symptoms you experience, to how you stop taking care of yourself when you're preoccupied.
And yes, I have also done my fair share of mental health treatment along with trying to address the physical. However, I've also spent MANY years negotiating with and understanding my neuroses, and I've become very familiar with my body- and stress patterns- as a result. I know the difference between "anxiety tummy troubles" and "being in danger."
The fact of the matter is that the help that exists for disabled and homeless people is not intended to foster self-sufficiency, and is intentionaly made mutually exclusive with doing so. Unfortunately, the purpose of the system is what it does. Myself and thousands of other people like me do everything right and still wind up where we are. It's not because we aren't trying; it's that being disabled itself is a full-time job, and so is navigating and maintaing benefits.
Likewise, individualism and meritocracy are very capitalistic and white supremacist ideals, and ones I don't prescribe to (I'm an anarcho-communist). Humans were never meant to be individualist; we are a communal species, and we need each other, and community, and we formed society for a reason. Even the staunchest individualist you know likely still is employed (someone took a chance on them), housed (someone rented or sold to them), fed (buys their food at a grocery store, sourced by workers all around the globe), clothed (by mass produced items made likewise all around the world), and benefititng from paying taxes, using services like electric or septic or running water, or occasionally needs a doctor or mechanic.
No one gets by completely alone in this life, and we shouldn't be expected to. Similarly, helping is a virtue, and people who do help tend to enjoy doing it. Why should receiving help be shameful?
I read a piece of advice once from therapy in terms of reframing thoughts: llowing your loved ones to help you is doing them a favor.
Ok then why aren’t you doing it. Are the system cheaters in the room with us, grandpa? Anyway, even if there are some people erroneously getting benefits, its certainly not for a lack of trying. As mentioned, getting and maintaing benefits is a full time job, and one of the most thankless there are. It fucking sucks. If somebody chooses to go out of their way to do this shit and succeeds, more power to them!!! I would go so far as to say that if they are that driven to do so, there is probably something "wrong enough" with them to qualify, and it ain't my business!
I would prefer a handful of people get benefits who "don't need it" than even one person who does get rejected on such pretenses (and trust me, the latter is far more common; ask anyone who has any familiarity with Disability benefits, everyone gets denied their first time).
(People really say this shit to my face, FYI. I'm not making up a guy to get mad at.) FALSE!! Being disabled (and even being homeless) has not stopped me from living a fulfilling life. I get to transition finally, I'm more secure than ever about myself and sense of style. I have the world's hottest boyfriend who also thinks I'm hot, and who loves me and takes care of me and depends on me. I have a lot of friends from all over the country and the world who support me, keep up with me, and like to see my art and my posts. I have hobbies and go to the occasioanl event and help my friends do chores and take care of their pets and honestly do all the same things I used to before, except now I have to devote more time to taking care of myself. Which, by necessity, means I spend more time living my own actual life rather than being at work.
The trade off is the lack of autonomy that money would otherwise provide. I don't get to choose when or where I come and go, I have to travel lightly and don't get to collect thigns I enjoy, I don't get to keep my own pets anymore. There are a lot of times when I'm stuck in bed due to pain, fatigue, nausea or other symptoms and it feels like I am completely out of control of my life. But there are times when abled people will feel that way, too. That IS life. Learning how to ride those waves is the process of being alive. What I'm doing is fundamentally no different than what I've always done (and frankly, I don't really have any less money now in the end).
No the fuck you don't.
Do you go around telling terminal cancer patients this shit. Think about what you say for 2 seconds, for fuck's sake.
I could just keep making more of these and have more than 1. or I cold make the whole page into oen. idk yet