if you’ve dealt with mystery health issues, you are undoubtedly familiar with 1) gaslighting and 2) the unknown

gaslighting from others. But also gaslighting from yourself.

You become incredibly aware of how others deal with the unknown and mysteries. Because every single day pain is thrust upon you as a mystery from the unknown.

if anyone is an expert on your qualia, it is you. Many of you probably even started a log where you record all your symptoms, pains, sensations, observations - so you can track more precisely what the heck is going on

You become an expert on your sensations. You also become an expert on which sensations and observations have an unknown origin. So this allows you to spot how other people deal with the unknown whenever you talk to them about your sensations, observations, and mysteries.

The vast majority of people cant handle the unknown. You learn this pretty quick. You tell them about your mystery health issues and 90% of the time they would rather take the brain-dead easy route of saying it is all in your head

Or your issues are actually really simple and you just need to take steroids or some allergy medicine for the rest of your life and that will solve everything

Or you just need to have more faith in whatever that person runs to when they are scared

it kinda makes sense tho, bc most people 1) havent dealt with health issues - and definitely not longterm ones 2) any health issue they dealt with wasnt rare and actually had a solution - it wasnt a mystery. So of course, if that is their experience of health issues in their life, they will be biased towards that experience being the same for everyone else

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Another realization often comes if your mystery health issues last long enough:

the pain that people feel from hearing your story of dealing with mystery health issues often seems MORE PAINFUL for them than the pain you've experienced yourself

Due to this, often people just stop talking about their health problems. You dont wanna cause others pain

You learn that pain and sensations are relative and abstract. Other people have no idea what you are feeling, except what you tell them or give them signals about (like a scream if something hurts).

This is why it is so easy for people to brush your health issues off if it’s just pain and no insanely obvious issues found in lab tests. Even at 7/10 pain, only YOU feel that pain. iz relative.

gaslighting

As discussed, you get used to people gaslighting you. if you arent good at doing research and finding good doctors, you will often be trapped with doctors that gaslight you. Even if you do research, it can still be hard to find the good doctors - especially since your insurance will vastly limit what doctors you can see. Oh, and dont forget you need a brand new referral every single time you gotta see a new doctor

if your pain is <5/10 or “on and off”, it becomes incredibly easy to gaslight yourself.

“oh maybe i was just imagining that pain,” you say on good health days

“maybe that inflammation that is detected every time we repeat lab tests is just a fluke”

of course, if other people are gaslighting you, then it becomes easier to gaslight yourself too

when i was a kid, i had a tooth infection. im pretty sure it lasted over a year. it was very very bad.

every single adult i brought it up to kept saying it was just a tooth ache and everyone gets them...despite me complaining about it for months straight

eventually, it became so bad i spent all day sleeping. When i wasnt sleeping i was laying in a very specific position that squished the area of my face where the infected tooth was - because that position and pressure on my face was what brought the most relief for me

Even after being in that position for months, the adults in my family just continued to gaslight me, until i couldnt go to school anymore. That was apparently a strong enough signal to get me to the dentist

i was just a kid, so of course i trusted their competency. My intuition was going crazy that something was wrong. in the beginning only one side of my face was swollen, but over time both sides of face and submandibular region became swollen. all my lymph nodes were swollen like crazy. The pain insanely intense

Puss would sometimes come out of the gums near my tooth. i didnt know anything about infections at the time, but the puss should have been obvious for me to mention...but i didnt

Moral of the story: it is very easy to gaslight yourself when others are gaslighting you and you are dealing with the unknown

im not saying this is 100% bad either. The placebo effect is real and hey, if you can gaslight yourself to good health...do it! i wouldn’t count on it tho.

not gaslighting, but not understanding

An aspect that is probably even more prominent than gaslighting is people simply not understanding what you are dealing with. Never asking the details to find out what you are feeling or what experiences you have been through. All the blood drawn. All the specialists seen. But to be fair, it’s an insane amount of info to explain and most every-day moments dont provide space to explain an entire medical situation to people.

Often, you recognize that most people dont actually want to know. As discussed earlier, those stories are too hard for them to hear. This is the case for basically everyone in my family. i would love for them to actually hear the story and details of everything ive been through. i even told them that recently. i just wanted them to know the story so that it makes more sense. i got one family member to agree to sit down and listen and it just didnt work. i tried telling my story and they just kept interrupting like an interrogation. They thought we were there to solve my health issues right then and there. i think hearing my story all the way through without interrupting me was too hard to hear. interrogation as cope lol

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i totally understand though. When someone is dealing with health issues, a lot of the time YOU cannot do anything. My grandpa has cancer and i cant do crap about that. My dad has chest pains from a surgery and i cant do anything about that. i have pain in my jaw, submandibular area, gums, throat, and sinuses - all accompanied by detected inflammation...and they cant do anything about it. So why talk about it??

Well, maybe for emotional release. But idk about you, but emotional intelligence is definitely not a part of my family

There’s so much misunderstanding even between family, you can imagine how annoying it is trying to explain this dreaded life of health issues to new people or friends you only see sometimes

dealing with the unknown

dealing with the unknown that is directly tied to your health and physical sensations...is terrifying. Your body hurts more and more and you have no idea why. You’ve had so many tests and seen so many specialists...yet nobody can figure out what is actually going on except 1) yep that’s inflammation 2) broad diagnoses that dont help with anything (like chronic sinusitis)

you can imagine a person living with this has to deal with hopelessness on a daily basis

Obviously if pain continues to increase over the years and you gain more and more symptoms, the conclusion is that you will probably die much earlier than most people. Which sucks. Truly. i have so many dreams.

Actually right now a big issue im having is my dreams conflicting with my health. Like can i even chase these dreams? Or do i just need to stay at home with my family going to weekly doctor appointments and lab tests? Can i even still work? Some days pain gets down to 2/10, but that’s a rare day.

Your health issues push you to chase your dreams even more directly...but they also prevent you from chasing them

Not knowing when an emergency is going to happen. Having emergency-level pain, yet going to an emergency room wont do anything for you bc 0 doctors know what the heck is going on. The default is to assume you have an infection and give you antibiotics. Never works.

Not knowing how to give updates to people close to you related to your health. Not being sure if you should. It always ruins their day.

Not knowing if all the CT scans are going to eventually give you cancer.

Not knowing if the new doctor is gonna be an asshole or not.

Not knowing if the next lady to take your blood is going to suck at it and stab you painfully over and over.

Not knowing if the solution is right there on the internet, but you have just never taken that specific path with doctors

that’s the reality of it