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queertemporality · 1 day

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I want to talk about a phenomenon that all-too-commonly happens to folks with chronic illness, disabilities, mental illnesses, or basically any condition that needs any kind of help to stay alive or suffer less. whether that is medical care, the process of getting access to medical care, accommodations, or anything else.

I am not sure if this has a name, but it is widely known, it happens all the time, and understanding it is in my eyes essential to disability rights.

it is not exclusively a disability rights issue, and chances are this will help you understand other people, or even might help you understand your own self. this is a difficult topic, and I cannot write about every possibility where or how this happens. but I will do my best here.

so here we go.

so say, you are suffering.

you are suffering in a way that can hopefully be alleviated with the help of others. your body does not like to suffer. your body tends to think, "I need to suffer less." and you figure that getting help means you can suffer less. so your goal becomes: "get help so I can suffer less."

go to the person(s) who can help, get that help, and then you can suffer less! like a doctor. sounds easy, right?

but somewhere along the way of getting that help, someone whose cooperation you need does not believe you are suffering in the way that you say you are. maybe they think you are lying about your suffering, maybe they think you are suffering from something else entirely, maybe they think the type of suffering you describe does not exist at all, or maybe they think you are not suffering enough to deserve that help.

the people saying this can be friends, family, bosses, teachers, insurance, benefits offices, anyone whose cooperation you need to suffer way less at any point in time. even doctors.

and they say they do not believe you for one thing or another, said in one way or another, to the point that they refuse to help.

you are suffering. and you need that person's help at that time, and they get in the way of you getting the help that you need, because they say they do not believe you. and your brain is screaming at you that you need to suffer less. your brain, wanting to suffer less, may switch priority from "I need help so I can suffer less" to "I need people to believe me so I can get help."

you might be in the worst pain of your life, you might have been suffering for weeks or months or years, and you might finally have a ray of hope of getting medical care, and you might go to a doctor and get called a liar to your face. this can happen for literally any medical condition, even life-threatening ones. or maybe you never even got to a doctor because you could not convince your family to take you, or your boss to give you time off, or your instructors to excuse the absence you needed to get to that medical care.

every additional event where someone not believing your suffering results in unnecessary suffering, your brain starts to prioritize getting people to believe that you are suffering in the way that you say, because that might be the biggest barrier to care throughout your life. all while you might begin to question your own perception of reality, because of how disorienting it can be to suffer so severely and have people tell you that the problem is not happening to you, and your reality is fake, and you do not need the help you say you do, and you are the problem. you know. gaslighting. it sucks!

"I need help so I can suffer less." becomes "I need other people to believe me so I can get help." becomes "I need other people to believe me." and you might even struggle to believe yourself, because of how many people did not believe you, and how distressing it is to have your reality questioned by people who refuse to help you.

you may not realize you have been traumatized. you may find yourself getting angrier, or more upset, or more defensive. you may misread situations where people are just trying to understand you better. because when people have not believed you in the past, you suffered to an unnecessary degree, potentially even to a point that you almost died. and when you suffer like that, where there is significant harm, "I need other people to believe me" is your brain trying to help you avoid that suffering again. "I need other people to believe me" can be the trauma from not getting the help that was needed.

I have seen this professionally surveyed in some patient populations, how many patients had been called liars or told it was "all in their head" before or after they got diagnosed. and the results are heartbreaking, because often times most patients surveyed had experienced what is being described in this post, especially by doctors. (big POTS survey by vanderbilt is a big one, has had a lot of presentations on that study. POTS is a nervous system disorder usually diagnosed with a single test called a tilt table test)

the trauma of being forced to suffer because someone did not believe you can influence how you perceive and interact with the world.

and when someone with power over you claims that they will believe you if you were just suffering more,

"I need help to suffer less" turns into "I need people to believe me so I can get help" can sometimes unfortunately turn into "I need to suffer more or prove my suffering more before people can believe me and I can get that help and eventually suffer less."

pro tip: there is no level of suffering, even when your life is threatened, that guarantees that everyone will believe you and help you. none. do not suffer more trying to convince someone else, because they still might not believe you, and then you just hurt yourself for no reason, to a degree you might not be able to fully recover from. instead, plan for what to do if that person never believes you.

it is warped. and it sucks. but it happens all the time. if someone goes out of their way to try to get you to believe them, even if it sets off a million alarm bells in your head, please understand: people who have suffered in the past because of not being believed can start to get defensive about not getting believed, because the goal of the body is to keep you alive while suffering as little as possible. and when not being believed is the difference between suffering more and suffering less, shit gets bad.

and not only that, people can lose relationships with their loved ones from not being believed.

it really fucks with people.

if everyone had believed me throughout my life while I was seeking accommodations and medical care, I might not be terminally ill right now. this is a big part of why I insist that people go to doctors recommended by patients, so they can get medical care quicker without getting called a liar to their face. I want as many as people as possible to have it better than me, and get care and compassion more quickly than I did. some doctors are just more likely to default to "the patient is lying" rather than "I do not understand the patient's symptoms". this is especially common with minority groups, whether or not said doctor acknowledges their own biases and discrimination.

this has caused me more distress in my life than the actual physical pain I have been in. I have had doctors, both in physical healthcare and mental healthcare, call me a liar to my face when I was at my most vulnerable and desperately needed medical care. I have had my body shutting down, I have been in so much pain, and I have begged for help in tears while being called a liar, even by my own medical team, even by my own family. nobody was ever able to undo what they did to me or the damage it did to my body. and very few even tried, not even with an apology. because everyone was just that certain I was lying.

(and no, I do not have the support or resources to sue. very few people do, especially if they actively need complex medical care. being disliked by doctors is BAD is the point here)

I have nightmares about it. I instinctively try to prove my medical conditions, because of how many times I have wound up screaming in pain or hospitalized or almost dead from being doubted. these days proving most of anything is easy, because I have a medical implant I can just show people. and if I showed it to you, this is why: I value you. but the ghosts of doubt still haunt me, even though my doctors say that my life is at risk and I am on some of the most powerful medicine in the entire world. being gaslit about your own body is traumatic.

I am not alone in this. there are countless others. and not everyone has realized what is happening to them. you may not have realized it yet either.

please understand. and be kind. and help if someone asks you for help, even if you do not believe them.

I do not know how many people are faking medical conditions, but I do know that nearly every chronically ill person I have ever met has been accused of faking and/or lying. this is one of the most common topics in the world for support groups and even certain actual medical conferences. "how do I get the people in my life to believe me?" and "how do I get doctors to believe me?" and "how can we as doctors stop doubting these patients, when we keep getting it wrong?"

whoever is reading this: at some point in your life, you may be 100% sure someone is completely lying, and can still be wrong. your words may stick with them forever and the help you refuse them might cause harm them in ways that cannot be undone. do not gamble with someone else's life based on your own limited understanding. do not become a villain in someone else's life. even if they are being rude. be understanding when someone is defensive. they may have barely survived.

if this is happening to you: do not lose sight of your goal. remember that you want to suffer less. do not beat yourself up for being so worried about being believed. write your experiences down so you can have more conviction in them. your body is trying to protect you. go to doctors recommended by patients if you can, even if every doctor until now has called you a liar. even if your brain insists that no doctor will ever believe you. consider seeking support specifically from places that specialize in helping people with chronic illnesses, or whatever your circumstances are. this is a really common thing people wind up needing help with, and not getting the right resources can perpetuate it. but it can get easier. make sure you are understanding about other people going through the same thing, too.

and no matter what happens or why:

this all gets easier with understanding and kindness. I have been able to heal so much over the years just by having more kindness and understanding aimed my way.

thank you for reading. take care.

#chronic illness #things I think about often tbh #and on the other side of this when I fall back into questioning my own experiences #I ask myself: if I don’t believe that what I say I experience is what I experience then who will?#so I am 100% committed to being on my own side and that helps somewhat but it’s still frustrating

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