...

Its late and I'm hyperactive and want to do several other things on top of this but I just need to talk about the experience of being diagnosed with multiple "complex" chronic illnesses. I also don't like to linger in this headspace for too long but don't want to get into my thoughts on that atm.

I'm just thinking of a gyenacologists appointment I had a few weeks ago... which I am hesitant to label as kinda medical misogyny and defineitely ableist (but I also don't like to ACTUALLY admit that... its weird. I put the label on it in a "do not open" way... like... that is what it kinda was but labelling it that way for me is in a dismissive way, an "ironic", shallow way for self preservation. A way that calling it that makes me feel like I am crying wolf about ableism and swimming in hypochondirasis even though I know that the more you peel the layers off it is actually just a little pulled thread in the massive tangled web or tapestry of multiple systemic issues.

Basically I want to rant about how as much as I am very much Not a Doctor, I am very insightful about my own health - the things that help, the things that hinder, when treatments work or fail, why I struggle with some things, the way my brain works. I know this stuff on a deep level, I live in my body and mind and this experience is my expeirence, duh! As much as all of this stuff is always with me, yes I am falliable, AND I am also liable to forget things or struggle with my recall (especially with multiple conditions that directly impact my cognition)

I have so much medical fatigue and what possibly classes as some level of ~trauma~ around some medical appointmets. It is the constant gaslighting, pushing of ideas etc on me which I think affects me most. I grew up watching my aunts health decline drastically to the point she is currently essentially unable to weight bare and was privvy to all the issues she had with medical professionals and the dismissal of support services. pretty sure she expeienced the "chronic fatigue and fibromyalgia are mental illnesses", think your way out of it :) realm of medical malpractic. So as much as I have always done my own research about symptoms I experienced (especially earlier on to try to learn the proper vocabulary to explain my experiences), I have always felt cautious not to (especially immediately UNLESS they ask more specific questions of my thoughts about things) directly say "hey, I think I have X specific condition/symptom." I rather try to explain whats going on and ask questions about symptoms I feel are related to a thing until they hopefully bring it up or dig deeped etc. sometimes I will ask if I'm at breaking point etc but yeah not usually immediately. I saw some good screenshots from an (old?) twitter thread where some people were talking about this and I'll include them later if I remember.

Anyways so as much as I do know myself, I also FORGET that interoception is something that I struggle with a lot. Not only bodily and emotional experiences but as a very loose example... if I hurt my hand very badly (and it is not immediately obvious) I could not say 100% if I thought it was broken or fractured or (assuming its higher) my wrist was actually sprained sprianed or twisted or what. People usually ask for a pain ratiing on a scale, and this happened to me at the gynaecologist appt the other day. I did not give an answer within x amount of time and the dr said "oh if you expeirienced pain you would know!", no... you are wildly incorrect. I am chronically ill and have multiple conditions that cause various amount and types of pain and you are asking me a question about a specific thing but 1. I am not in the pain at the moment so I can't tell you 100% because bad memory, 2. I do not know if that pain was because of my period or if it was because i did a lot of bending the day before. 3. my pain threshold is a soup and out of whack. As much as I cant quantify and explain my own inner expieriences I know that it is abnormal, I know my levels of functioning are far lower than they should be, I know that if an average joe suddenly felt a fraction of what I feel on any given day it would render them useless for a bit. So yes, I am going to struggle to articulate that I am experiencing excrtiang pain every fortnight and how that looks amidst all the other chaos.

Something that is Very Big for me is that I am aware that a lot of experiences are subjective? hey way i think or describe a symptom or pain might be different to how someone else describes it but i dont think anybody could ever definitively say that they are or are not the same symptom. I have access to a different vocabulary and words mean some things to me that they may not mean to someone else. One of the biggest things that I wish I could answer is "do I expeirence subluxations?" my guy... when I suddenly move and something in any given part of my body goes funky I honestly could not tell you if it was muscular, tendons, being pulled or whatever or if its my bones and joints sloshing around or what. "you'd know, it would be so painful, it would severely impact your ability to function" okay, i don't disagree with that, but people with chronic health conditions are very good at masking and minimising. people with late diagnosed mental illness and neurodivergence are very good at masking and minimising. weird interoception means that sometimes my body does not tell me how i feel/struggles to translate it in a way that makes sense, or delays the feeling... as well as so many other posibilities. it makes me frustrated when drs say stuff like that without considering the possibility of the patient having any past (emotional) trauma, or anything that skews this... like.. I am a kid put into the world and have all thee expectations put on me from various things... with invisible illnesses unless someone notices signs of them as a kid and believes the kid and whatever... like... some kids are just not going to talk about it or bring things up.

this rant could be so much longer and get into more random shiz but its getting late and I'm just so annoyed that at 33 I still feel liek verbalising things to (espeically new) drs is difficult. And a lot of the "solutions" to a lot of my concerns are expensive or draining, disruptive, etc. If I really wanted to put my (physical) health first I would NOT be able work because it would take all my time and money and energy to attend appointments and have support with it.

i was gonna tangent rant about something else related to this but my brain is falling asleep