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my wheelchair. truly DIY project (derogatory)🫠
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:o thank you so much!!!!!! didn’t know joanne sell foam!!! worry they not going be stiff enough but worth try!!
also. figured out (part of*) issue of why lean forward like shrimp in wheelchair despite very leaned back backrest
(* part where wheelchair mechanical issue anyway, imagine there body issue component too but no idea why body do it)
is because dump issue!!!!
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[id: simple drawing of 3 wheelchairs. wheelchair 1 has straight back n straight seat & form 90 degree angle. wheelchair 2 have leaned back backrest which make back rest to seat angle more than 90 degree but back of seat is also lower than front of seat (has lots of dump). wheelchair 3 have bigger wheels represent by two circles instead of one, back rest is leaned back n angle more than 90 degree but no dump. end id]
so. standard is chair 1 right. everything straight & perpendicular & 90 degree. this make body sit like shrimp because need use core to make sure body stay up and well
so lean backrest back, make angle more than 90 degrees. then soon after, make dump bigger, so back of seat lower than front of seat. figure 2 exaggerated but something like that. this work because dump make sure gravity -> body actually lean back (i think)
but then got bigger wheels (like. still same 24 rim size, just wheels bigger bc have anti pop technology). erased much of dump. think body don’t naturally tolerate angle??
don’t know how explain. but is dump issue
but already at greatest dump current chair can naturally do. just erased by wheel
so thinking abt other ways to increase dump… or increase difference between front seat height vs back seat higher
maybe put in foam wedge under cushion?? but custom cut expensive
don’t recommend do this if you have other options lol imagine this create more issues but can’t really … get another chair
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top of shoulder at 1 & shoulder blade is at above where wing is (the taper thing between 2-3)
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[id: doodle of what describe above. end id]
tho in other news. insurance approved headrest & better cushion for manual chair n deliver in half a month maybe help with neck instability 🎉
haha though when body get tired slump forward like shrimp spine slump forward neck slump forward don’t have ability keep body up even if backrest really leaned back so idk if will actually lean on headrest
maybe make self chest strap time… with pretty fabric
how to attach to chair though is. question
and. headrest going to be idk. probably another 5-10 lb weight? putting “ultra light” manual chair 50+ lb total.
they should make these shit lighter
one reason hesitant for joy stick based power assist like e fix is because add 50+lb weight (another is insurance prob won’t cover nor have enough time until lose insurance but whatever). at this point 50 more lb not matter if can’t propel current chair weight anyway
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also. figured out (part of*) issue of why lean forward like shrimp in wheelchair despite very leaned back backrest
(* part where wheelchair mechanical issue anyway, imagine there body issue component too but no idea why body do it)
is because dump issue!!!!
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[id: simple drawing of 3 wheelchairs. wheelchair 1 has straight back n straight seat & form 90 degree angle. wheelchair 2 have leaned back backrest which make back rest to seat angle more than 90 degree but back of seat is also lower than front of seat (has lots of dump). wheelchair 3 have bigger wheels represent by two circles instead of one, back rest is leaned back n angle more than 90 degree but no dump. end id]
so. standard is chair 1 right. everything straight & perpendicular & 90 degree. this make body sit like shrimp because need use core to make sure body stay up and well
so lean backrest back, make angle more than 90 degrees. then soon after, make dump bigger, so back of seat lower than front of seat. figure 2 exaggerated but something like that. this work because dump make sure gravity -> body actually lean back (i think)
but then got bigger wheels (like. still same 24 rim size, just wheels bigger bc have anti pop technology). erased much of dump. think body don’t naturally tolerate angle??
don’t know how explain. but is dump issue
but already at greatest dump current chair can naturally do. just erased by wheel
so thinking abt other ways to increase dump… or increase difference between front seat height vs back seat higher
maybe put in foam wedge under cushion?? but custom cut expensive
don’t recommend do this if you have other options lol imagine this create more issues but can’t really … get another chair
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:o thank you!!
wish can post picture of chair because very proud of decorate but because so decorate, very identifiable…. but! have tilite aero z frame & backrest specifically is comfort company acta back & look like this
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[badly written id: picture of backside of acta-back wheelchair backrest. is black, mid-high/high length. end id]
will be having headrest soon which think will be attach to six holes thingy at top!
tho in other news. insurance approved headrest & better cushion for manual chair n deliver in half a month maybe help with neck instability 🎉
haha though when body get tired slump forward like shrimp spine slump forward neck slump forward don’t have ability keep body up even if backrest really leaned back so idk if will actually lean on headrest
maybe make self chest strap time… with pretty fabric
how to attach to chair though is. question
and. headrest going to be idk. probably another 5-10 lb weight? putting “ultra light” manual chair 50+ lb total.
they should make these shit lighter
one reason hesitant for joy stick based power assist like e fix is because add 50+lb weight (another is insurance prob won’t cover nor have enough time until lose insurance but whatever). at this point 50 more lb not matter if can’t propel current chair weight anyway
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I don't think people realize how RECENT some medical care is. The migraine preventative my husband is on was JUST released. The heart medicine that works best for me? When I got diagnosed, I was told "there's this medicine we think would work for you but it's off label use and insurance would never cover and it's $1800 a month without coverage" and then a few years later I was on that medicine.
My ventilator that's portable and lightweight. The one thats the size of a lunch box and 11 pounds? That's pretty recent, even now there's a lot of changes happening to the technology. I found out I'm being switched to a new model with twice the battery life. That means I'm no longer limited to 12 hours of mobility a day without having to be plugged in. (And I'm lucky for 12, I qualified for an extra battery. If I didn't it would be 8)
We live in unprecedented times to be disabled. And just because technology EXISTED before that doesn't mean it was good or available for people to actually use.
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nonverbal and semiverbal people deserve to get paid like 20 dollars every time someone uses those words to mean "TEMPORARILY unable to speak" or "less words than USUAL/harder to talk than USUAL"
and also for clogging up the tags
especially because when your means of communication is considered abnormal (and often frustrating because abled people can't stand even momentary inconvenience), people treat you badly. doctors interpret it as anxiety or psychosis or mania, or as bad behavior, or as lying. irrationality and neuroticism. having communication issues in combination with physical issues, to drs, makes you suspicious and untrustworthy, or difficult (apparently they don't fucking know what neurology is, or symptoms of brain damage, or that people with congenital conditions are more likely to be i/dd or cognitively disabled, so i ask you, what the fuck do they know?)
people will not be patient with you. they will not respect or listen to you. they may not believe you. they may make fun of you. they will not work with you or help you find words, help you describe things, or help you find another way to communicate or express what you need to express. they want you to talk, and to talk the way they do, exactly the way they do, and they will not make exceptions for disability. to them, disability is not an excuse
it also puts you at a higher risk of abled people deciding you don't get to make your own decisions, even if you can, and just completely taking away your autonomy and making you do things you don't want to because you can't argue and they know it
people misinterpret you, interrupt you, talk over you, and condescend you. if you're arguing with someone, they will probably use your communication issues to their advantage. to them, if you can't make your point "articulately" and precisely and coherently your point doesn't matter and you clearly don't know what you're talking about. this can be used both by random people and authority figures, who have power over you, to argue that you're unreliable, irrational, confused, or uneducated
you may either fall behind in conversations or be completely excluded. people really will just literally ignore you, both online and offline. people get impatient and conversations end as you're typing because everyone else can think faster and easier, and can articulate and socialize efficiently
receptionists also get impatient
and i want to mention that people think literature written in "simple language" is "bad writing" and it frustrates me because it implies that people who have intellectual, developmental, or cognitive disabilities shouldn't write at all (ntm the "i'm going to start sending grade school reading resources to people i think have a developmental disability because they don't have what i consider efficient reading comprehension skills" post i saw this morning, multiple times.)
anyway
fucking sick of it
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Bodily autonomy is not just about abled people choosing not to have a baby, it's also about respecting disabled people's right to have one. And it's not just about mentally ill people's right to treatment and meds, but also about their right to refuse both. It's about respecting people's right to choose for themselves, even when you disagree with their choices. Real bodily autonomy includes the right to make a choice that YOU wouldn't make or advocate for
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tho in other news. insurance approved headrest & better cushion for manual chair n deliver in half a month maybe help with neck instability 🎉
haha though when body get tired slump forward like shrimp spine slump forward neck slump forward don’t have ability keep body up even if backrest really leaned back so idk if will actually lean on headrest
maybe make self chest strap time… with pretty fabric
how to attach to chair though is. question
and. headrest going to be idk. probably another 5-10 lb weight? putting “ultra light” manual chair 50+ lb total.
they should make these shit lighter
one reason hesitant for joy stick based power assist like e fix is because add 50+lb weight (another is insurance prob won’t cover nor have enough time until lose insurance but whatever). at this point 50 more lb not matter if can’t propel current chair weight anyway
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(worsening?) POTS + (probably cci/aai) neck instability causing migraine & headache & probably cut blood supply to brain (< actually who tf knows) is. woozy combo
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people assuming you are intellectually disabled or insulting your appearance as a visibly different person or just as a disabled person in general by comparing you to id people does not make id people or the concept of intellectual disability the problem.
the way abled people (and you) think of id people and intellectual disability is the problem.
additionally, a lot of id people have facial differences like strabismus and ptosis because a lot of neurological, chromosomal, and genetic disabilities come with intellectual disability. therefore it is not unheard of for abled people to assume you are intellectually disabled when you have a facial difference or are visibly disabled or autistic, especially as a young person.
autism also frequently occurs in people with congenital disabilities that cause facial differences, visible differences, and physical disability. intellectual disability, developmental disabilities, learning disabilities, and cognitive disabilities are common in many congenital disabilities. people offline know this, even if people online somehow never seem to.
remember congenitally disabled people ever, yeah? and care about us. the way people treat you when they think you're a different kind of disabled should make you angry about the way people with that disability are treated, not angry either at them or at your intelligence or abilities or independence being questioned.
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Happy Cerebral Palsy Awareness Day !!!
[Image description: A halfBody drawing of two characters with cerebral palsy in a simple art style. The character on the left is smiling while bending their arms close to their chest with curled fingers. They have yellow puffy hair, pale skin and a faded cleft lip scar. They are wearing a yellow hairband, hearing aids and a black crop top with a nonbinary flag pin. They're sitting in a manual wheelchair. The second character is hunched over towards them and has his hand on their shoulder in a friendly manner. He has brown skin, black twists, and a cataract in his right eye. He is wearing a light green hoodie and jeans. He is resting his forearm on a crutch. The background is in muted green and yellow with a ribbon going around the whole image. The ribbon has the disability pride flag colors on it and text that says "25th march". End image description.]
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Cerebral Palsy Day is March 25th! 💚
An illustration of two people with CP standing at either side of a green banner that reads, ‘cerebral palsy awareness month’ with blue sky and grass in the background. The character on the left is an afro Latino wearing a long-sleeved shirt with a t-shirt over top of it, jeans with holes at the knees, and converse. He is using a mobility chair, noise-cancelling headphones, and a speech tablet. The character on the right is a white woman with an overbite smiling towards the audience. She is wearing a leather hat, button-up, khaki shorts, and hiking boots. She is using arm crutches. 
Accessibility, accommodation, and acceptance should be every day! 
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just a reminder that "listened to marginalized people about their oppression" means "people know their own experiences better than you do" not "the most oppressed person in the room is always right about everything"
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Writing Intellectually Disabled Characters
[large text: writing intellectually disabled characters]
Something that very rarely comes up in disability media representation are intellectually disabled characters. There is very little positive representation in media in general (and basically none in media meant specifically for adults or in YA). I hope this post can maybe help someone interested in writing disabled characters understand the topic better and create something nice. This is just a collection of thoughts of only one person with mild ID (me) and I don’t claim to speak for the whole community as its just my view. This post is meant to explain how some parts of ID work and make people aware of what ID is.
This post is absolutely not meant for self diagnosis (I promise you would realize before seeing a Tumblr post about it. it’s a major disorder that gets most people thrown into special education).
Before: What is (and isn’t) intellectual disability?
ID is a single, life-long neurodevelopment condition that affects IQ and causes problems with reasoning, problem‑solving, remembering and planning things, abstract thinking and learning. There is often delay or absence of development milestones like walking (and other kinds of movement), language and self care skills (eating, going to the bathroom, washing, getting dressed etc). Different people will struggle with different things to different degrees. I am, for example, still fully unable to do certain movements and had a lot of delay in self-care, but I had significantly less language-related delay than most of people with ID I know. Usually the more severe a person’s ID is the more delay they will have.
Intellectual disability is one single condition and it doesn’t make sense to call it “intellectual disabilities” (plural) or “an intellectual disability”. It would be like saying “they have a Down Syndrome” or “he has autisms”. The correct way would be “she has intellectual disability” or “ze is intellectually disabled”.
Around 1-3% of people in the world have intellectual disability and most have mild ID (as opposed to moderate, severe, or profound). It can exist on its own without any identifiable condition or it can be a part of syndrome. There is over a thousand (ranging from very common to extremely rare) conditions that can cause ID but the most common are Down Syndrome, Fragile X Syndrome, Fetal Alcohol Syndrome, Autism, Edwards Syndrome, DiGeorge Syndrome and microcephaly. Not every condition always causes ID and you can have one of the above conditions without having ID as long as it’s not necessary diagnostic criteria to be met. For example around 30% of autistic people have ID, meaning that the rest 70% doesn’t. It just means that it’s comorbid often enough to be counted as a major cause but still, autistic ≠ intellectually disabled most of the time.
A lot of things that cause intellectual disability also come with facial differences, epilepsy, mobility-related disabilities, sensory disabilities, and limb differences. A lot, but not all, intellectually disabled people go to special education schools.
Intellectual disability isn’t the same as brain damage. Brain damage can occur at any point of a person’s life while ID always starts in or before childhood.
“Can My Character Be [Blank]?”
[large text: “Can my character be [blank]?”]
The difficulty with writing characters with intellectual disability is that unlike some other things you can give your character, ID will very directly impacts how your character thinks and behaves - you can’t make the whole character and then just slap the ID label on them.
Intellectually disabled people are extremely diverse in terms of personality, ability, verbality, mobility… And you need to consider those things early because deciding that your character is nonverbal and unable to use AAC might be an issue if you’re already in the middle of writing a dialogue scene.
For broader context, a person with ID might be fully verbal - though they would still probably struggle with grammar, what some words mean, or with general understanding of spoken/written language to some degree. Or they could also be non-verbal. While some non-verbal ID people use AAC, it’s not something that works for everyone and some people rely on completely language-less communication only. There is also the middle ground of people who are able to speak, but only in short sentences, or in a way that’s not fully understandable to people who don’t know them. Some might speak in second or third person.
Depending on the severity of your character’s disability they will need help with different tasks. For example, I’m mildly affected and only need help with “complex” tasks like shopping or taxes or appointments, but someone who is profoundly affected will probably need 24/7 care. It’s not infantilization to have your character receive the help that they need. Disabled people who get help with bathing or eating aren’t “being treated like children”, they just have higher support needs than me or you. In the same vein, your character isn’t “mentally two years old” or “essentially a toddler”, they are a twenty-, or sixteen-, or fourty five-year old who has intellectual disability. Mental age isn’t real. Intellectually disabled people can drink, have sex, smoke, swear, and a bunch of other things. A thirty year old disabled person is an adult, not a child!
An important thing is that a person with ID has generally bad understanding of cause-and-effect and might not make connections between things that people without ID just instinctively understand. For example, someone could see that their coat is in a different place than they left it, but wouldn’t be able to deduce that then it means that someone else moved it or it wouldn’t even occur to them as a thing that was caused by something. I think every (or at least most) ID person struggles with this to some extent. The more severe someone’s disability is the less they will be able to connect usually (for example someone with profound ID might not be able to understand the connection between the light switch and the light turning off and on).
People with mild intellectual disability have the least severe problems in functioning and some are able to live independently, have a job, have kids, stuff like that.
What Tropes Should You Avoid?
[large text: what tropes should you avoid?]
The comic relief/punching bag;
The predator/stalker;
The “you could change this character into a sick dog and there wouldn’t be much difference”;
…and a lot more but these are the most prevalent in my experience.
Most ID characters are either grossly villainized (more often if they have also physical disabilities or facial differences) or extremely dehumanized or ridiculed, or all of the above. It’s rarely actually *mentioned* for a character to be intellectually disabled, but negative “representation” usually is very clear that this who they’re attempting to portray. The portrayal of a whole group of people as primarily either violent predators, pitiful tragedies or nothing more than a joke is damaging and you probably shouldn’t do that. It’s been done too many times already.
When those tropes aren’t used the ID character is still usually at the very most a side character to the main (usually abled) character. They don’t have hobbies, favorite foods, movies or music they like, love interests, friends or pets of their own and are very lucky if the author bothered to give them a last name. Of course it’s not a requirement to have all of these but when there is *no* characterization in majority of disabled characters, it shows. They also usually die in some tragic way, often sacrificing themselves for the main character or just disappear in some off-the-screen circumstances. Either way, they aren’t really characters, they’re more like cardboard cutouts of what a character should be - the audience has no way to care for them because the author has put no care into making the character interesting or likable at all. Usually their whole and only personality and character trait is that they have intellectual disability and it’s often based on what the author thinks ID is without actually doing any research.
What Terms to Use and Not Use
[large text: What Terms to Use and Not Use]
Words like: “intellectually disabled” or “with/have intellectual disability” are terms used by people with ID and generally OK to use from how much I know. I believe more people use the latter (person first language) for themselves but i know people who use both. I use the first more often but I don’t mind the second. Some people have strong preference with one over the other and that needs to be respected.
Terms like:
“cursed with intellectual disability”
“mentally [R-slur]”
“moron”
“idiot”
“feeble-minded”
“imbecile”
is considered at least derogatory by most people and I don’t recommend using it in your writing. The last 5 terms directly come from outdated medical terminology specifically regarding ID and aren’t just “rude”, they’re ableist and historically connected to eugenics. To me personally they’re highly offensive and I wouldn’t want to read something that referred to its character with ID with those terms.
(Note: there are, in real life, people with ID that refer to themselves with the above… but this is still just a writing guide. Unless you belong to the group i just mentioned I would advise against writing that, especially if this post is your entire research so far.)
Things I Want to See More of in Characters with Intellectual Disability
[large text: Things I Want to See More of in Characters with Intellectual Disability]
[format borrowed from WWC]
I want to see more characters with intellectual disability that…
aren’t only white boys.
are LGBT+.
are adults.
are allowed to be angry without being demonized, and sad without being infantilized.
are not described as “mentally X years old”.
are respected by others.
aren’t “secretly smart” or “emotionally smart”.
are able to live independently with some help.
aren’t able to live independently at all and aren’t mocked for that.
are in romantic relationships or have crushes (interabled… or not!).
are non-verbal or semi-verbal.
use mobility aids and/or AAC.
have hobbies they enjoy.
have caregivers.
have disabilities related to their ID.
have disabilities completely unrelated to their ID.
have friends and family who like and support them.
go on cool adventures.
are in different genres: fantasy, romComs, action, slice of life… all of them.
have their own storylines.
aren’t treated as disposable.
don’t die or disappear at the first possible opportunity.
…and I want to see stories that have multiple intellectually disabled characters.
I hope that this list will give someone inspiration to go and make their first OC with intellectual disability ! This is just a basic overview to motivate writers to do their own research rather than a “all-knowing post explaining everything regarding ID”. I definitely don’t know everything especially about the parts of ID that I just don’t experience (or not as much as others). This is only meant to be an introduction for people who don’t really know what ID is or where to even start.
Talk to people with intellectual disability (you can send ask here but there are also a lot of other people on Tumblr who have ID and I know at least some have previously answered asks as well if you want someone else’s opinion!), watch/read interviews with people who have ID (to start - link1, link2, both have captions) and try to rethink what you think about intellectual disability. Because it’s really not that rare like a lot of people seem to think. Please listen to us when we speak.
Good luck writing and thank you for reading :-) (smile emoji)
mod Sasza
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Happy World Down Syndrome Day !!!
People with Down Syndrome are an irreplaceable part of the disability and neurodivergent communities, and we need to do a better job at including them! Don't forget about them in your activism!
[Image description: Digital drawing of two smiling people with Down Syndrome standing next to each other, interlocking hands in the air. The person on the left is a teenage white boy with long brown hair, wearing a yellow sweater. The person on the left is a young Black woman with braided hair, wearing a yellow shirt and jeans. Behind their hands is a yellow star shape. In the bottom left corner, "#EndTheStereotypes" is written in all caps. Between the characters is the date "21/3". Background is light blue. End image description.]
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What is immunocompromisation?
Being immunocompromised means you have a weaker immune system than most people. There are two main ways people become immunocompromised
1. Medical Conditions
Certain medical conditions cause your immune system to be weaker. Some examples include:
Immunodeficiencies- A category of conditions causing a lower number of or lower efficacy of immune cells. This category is divided into two subcategories: primary immunodeficiency and secondary immunodeficiency. Primary immunodeficiency is a subcategory consisting of hundreds of different conditions all causing a lower number of immune cells. Secondary immunodeficiency is a smaller category consisting of conditions where a person lacks immune cells due to other causes such as malnutrition.
HIV/AIDS
Some cancers
2. Medications
There are two main types of medications that result in being immunocompromised: Immunosuppressants and chemotherapy
Immunosuppressive medications- Immunosuppressive medications are medications designed to suppress your immune response. These can work in many different ways with some targeting a broad range of immune cells and others being highly specific. These medications are often used for organ transplant recipients and people with moderate-severe autoimmune diseases. Some medications in this category include: organ transplant medications, biologics, and high dose corticosteroids
Chemotherapy- Chemotherapy often comes with the effect of preventing new fast-dividing cells from being produced. This is why hair loss is such a common side effect of chemotherapy. Immune cells are fast dividing and therefore frequently are unable to be produced while on chemotherapy
The effects of immunocompromisation
Immunocompromisation has a large range of effects depending on the reason someone is immunocompromised. The most common effects are an increased susceptibility to illness and cancers. Increased susceptibility to illness can look like:
Frequent illnesses
Illnesses that are more severe than they would be for other people
Recurrent infections
Infections that don't respond to medication
Delayed response to infection
Infections that last longer than usual
Some people are more susceptible to certain types of infections. For example anifrolumab, a biologic used for lupus, makes people more susceptible to herpes zoster and respiratory tract infections while prednisone, a corticosteroid, increases risk of infection across the board. This occurs due to different causes of immunocompromisation affecting different immune cells with different roles in preventing and responding to infection.
Grades of severity
Recently the term "moderately and severely immunocompromised" has been used in covid-19 resources. Certain factors are considered to make someone moderately or severely immunocompromised, these include:
Advanced or untreated HIV infection
Moderate or severe primary immunodeficiencies
Hematologic malignancies
Active treatment for solid tumors or hematologic malignancies
Immunosuppressant medications used for solid organ or islet transplants
CAR-T cell therapy or hematopoietic stem cell transplantation
Treatment with alkylating agents, antimetabolites, high-dose corticosteroids, chemotherapeutic agents, TNF blockers, and other biologic agents that are immunosuppressive or immunomodulatory
What immunocompromisation is not
It's worth noting that getting sick frequently or getting seriously sick from illnesses that are usually mild is a warning sign for being immunocompromised but does not inherently make you immunocompromised. Some people are just more susceptible to illness without being immunocompromised.
Having minimal response to an infection that is usually more serious is a sign of a strong immune system, not a weak one.
Being immunocompromised is also not the same as being high risk for serious infection. All immunocompromised people are high risk but not all high risk people are immunocompromised. Immunocompromisation is specifically when someone is high risk because their immune system is weak. Particularly in regards to covid, there are many conditions that make you higher risk that do not involve a weak immune system.
Autoimmune diseases do not automatically make you immunocompromised. Something being a disorder of the immune system does not mean that you are immunocompromised because immunocompromised means a weaker immune system not a malfunctioning immune system.
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