zylahbee

21+ | she/they | bee or zylah

[zylahbee]

blog info 🌷🍯

hi my name is bee, welcome to my blog! it’s basically my diary.

here i talk about my experience as a LSN disabled/chronically ill person! i am medically complex and have medical PTSD. i also talk about abuse and childhood trauma. if any of those topics trigger you this is your warning ♡

topics 💌

chronic illness/disability

mental health

human rights

favourite media 🍰

alice in wonderland barbie ever after high firefly frieren derry girls gilmore girls little women marionetta marvel precure pripara stardust strawberry shortcake tangled the faraway tree the pitt the rosewood chronicles tinkerbell winx club

[ID: all images are yellow and pink banners. first 3 are hearts, 4th is a sunset. /End ID]

Free Palestine. Free Congo. Free Sudan.

plain text version

[zylahbee]

fucking breaks my heart every time a post of mine gets a bunch of reblogs and replies from people saying they’ve never been listened to by medical professionals.

there are good doctors out there i promise, i hope you all find one, and im so sorry you’re being ignored.

[zylahbee]

ageing is a massive privilege and i’m sick of pretending it’s not. to have the precious gift of a “good, long life” is rare, it’s not a given.

[zylahbee]

i spent my childhood as a sick kid watching youtubers vlog their chronically ill lives. i heard about hEDS, about POTS and MCAS too. i heard about gastroparesis, sickle cell, and t1D. i thought i was learning about realities other than mine, turns out in 10 years time id be diagnosed with some of those myself.

its crazy how after not watching anything related to that for over 8 years, the information still stuck with me and has helped me understand myself since diagnosis.

[zylahbee]

sexism in medicine kills people. racism in medicine kills people. fatphobia in medicine kills people. queerphobia in medicine kills people. classism in medicine kills people. ableism in medicine kills people.

do not downplay people’s fears about being mistreated because they are a part of a marginalised group. it is a matter of life and death and you should be angry about it.

[fabiansociety]

also worth acknowledging that gaps in healthcare that lead to illness, injury, and death among marginalized people are not bugs of the system, but features that are insistently reinforced at all levels of the system.

health is not unequally distributed because of poverty, health is hoarded by rich white powerful people in order to reify the borders of race, class, gender, sexuality, etc

health is hoarded the same way wealth is and for the same reasons

[zylahbee]

it’s really fucking simple, if it’s not unhygienic for a man to have body hair than its sure as hell not unhygienic for anybody else.

women are beautiful in their natural bodies. women didn’t shave for most of history and were still beautiful.

[calmmyfears]

i always get really anxious and sad at the beginning of warm and sunny weather because it reminds me in a very confronting way all that i am missing and also my chronic illness doesn't pause or suddenly gets better when its "happy" weather.

[zylahbee]

the warmth of the sun is my favourite feeling in the world and i have developed severe migraines with photophobia and can rarely enjoy it anymore.

[zylahbee]

this ehlers danlos awareness month stop saying EDS when you mean hEDS! and stop saying hypermobility means people have EDS!

EDS is so much wider than just hEDS, there are 13 types and not all include hypermobility as a symptom. please be specific when talking about specific hEDS symptoms so we don’t add to misinformation and confusion.

[zylahbee]

blog info

(plain text version)

hi my name is bee, welcome to my blog! it’s basically my diary.

here i talk about my experience as a LSN disabled/chronically ill person! i am medically complex and have medical PTSD. i also talk about abuse and childhood trauma. if any of those topics trigger you this is your warning ♡

topics

chronic illness/disability

mental health

human rights

favourite media

alice in wonderland, barbie, ever after high, firefly, frieren, derry girls, gilmore girls, little women, marionetta, marvel, precure, pripara, stardust, strawberry shortcake, tangled, the faraway tree, the pitt, the rosewood chronicles, tinkerbell, winx club

Free Palestine. Free Congo. Free Sudan.

please let me know if anything on this post is inaccessible!

decorated version

[zylahbee]

many disabled people are experiencing multiple debilitating symptoms at once, every day.

this seems to be a major part of my life that is incredibly difficult for abled people to grasp.

they cling onto one symptom, and create this imaginary image of my health that said symptom is all i deal with, and if i am not experiencing that symptom then i am completely fine!!!

an entirely hilarious phenomenon when i literally have multiple illnesses. so even if each illness came with one symptom i would still have multiple?? 😭

i seriously don’t understand why almost every abled person i encounter thinks like this.

[faintlyhauntedsanctuary]

And then they find out you have multiple symptoms and multiple conditions and go "hm so... None of them are real... A person can't possibly have this many problems... If you have more than one Symptom or Condition, you are lying and they are all fake!"

Abled math!!!

[zylahbee]

preach.

[zylahbee]

i have been sick my entire life. never known a day in a healthy body, and yet… it took over 20 years for me to be diagnosed and treated properly.

over and over again through my childhood, a problem would be diagnosed and treated by a specialist, then i would be told i am now in perfect health and sent off into the world.

this happened at birth, at 6 months, at 7, at 14, at 17, at 20, and then finally, i got a team of doctors who look at my whole body, my whole health, and treat me as the complex case i have always been.

the medical system is built around specialities in a reality where most people have multiple intertwining conditions. it’s impossible to navigate, and it leaves people untreated, often causing further problems.

[zylahbee]

may is ehlers danlos awareness month, and it’s my first one since being diagnosed with hEDS!

there are 13 types of EDS, and hEDS is by far the most common subtype. it naturally gets the most attention as a result of this, so for anybody who has hEDS, use this month to shed a little light on our friends with rare and ultra rare subtypes. they could use our help!

i have immense privilege. i have doctors who know what hEDS is, and take me seriously. it may feel like a rarity to come across that as someone with hEDS, but can you imagine how rare it actually is to find doctors like that when you have a rare or ultra rare subtype?

our friends with other forms of EDS need and deserve more attention. they are not our competition, and the attention that they do get is not dismissing hEDS.

[zylahbee]

sexism in medicine kills people. racism in medicine kills people. fatphobia in medicine kills people. queerphobia in medicine kills people. classism in medicine kills people. ableism in medicine kills people.

do not downplay people’s fears about being mistreated because they are a part of a marginalised group. it is a matter of life and death and you should be angry about it.

[zylahbee]

consistency is not as simple as doing something every day, week, or month etc. especially when you’re dynamically disabled.

it's more like consistently trying your best to do as much of the task as your body will let you.

if that means that for a month you never actually complete the whole task, but instead did: 10% of it on some days, 50% of it on others and maybe even 90% some days, then thats fine. you still consistently put your all into this task. you just didn’t push past that, which you shouldn’t!

do not hold yourself to impossible standards. it will not help.

[zylahbee]

its depressing how normalised it is for disabled people to experience ableism on a regular basis.

even by those closest to us, our parents, partners, best friends.

its such a rarity to find someone who truely sees your disability for what it is, nothing more, nothing less.

[samirasystole]

still pissed that ogilvie said he thinks the ED is too hard and that he should go into peds or family med. and instead of using that as a moment to teach this med student that those specialties are not less difficult or less heartbreaking, whitaker says “yeah you can do that, but i’d be soooo bored and i actually like being important here” like ?????? i get that this is the ‘we love the ed’ show but these two specialties are both in the list of highest burnout and stress rates so idk why the fuck that was necessary. the ed jumps out at the top, but these follow closely afterwards. especially given the fact that those two specialties are female dominated; it just felt a little weird to have these two men talk about how the ed is better and more worth it and how tough they are for choosing it. it is that deep to me

[zylahbee]

trying to heal from your trauma in an environment that mirrors the trauma, is like trying to flush your system from poison, with another poison.