#ehlers-danlos awareness

[chronically-evie]

my mom keeps trying to get me to go to the ER when im having a flare up and i have no idea what to tell her.

because ive BEEN to the ER before. you wanna know what they did? while i was sweating, shaking, and sobbing, curled in a ball of pain?

they asked me if i was on my period. when i told them no, they asked me if i was pregnant.

when i told them no, because i wasn't sexually active, they forcibly tested me anyways, and then when it came back negative said, "well maybe you should just take a few deep breaths", gave me liquid ibuprofen, and sent me home.

disabled people, in this particular situation disabled afabs, are never fucking listened to.

the ER staff literally LAUGHED at me multiple times. they pointed at me when i was having one of the worst episodes of my life and snickered.

so no, i do not want to go to the fucking ER. my heating pad, ice packs, and nausea meds are going to help me more than anything a hospital could do.

[crippledpunks]

this is your daily reminder to stop being abusive and mean toward people with bladder and bowel issues.

im tired of hearing people mock those who struggle with bladder/bowl control, for people who can't tell when they need to go until it's too late or at all, for people who have uncontrollable voidings and leaking, for people who need to wear incontinence products around the clock, for people who need them influctuating amounts and need different kinds of products, for those who bedwet, for those who can't afford incontinence products so their clothes get dirty- to everyone with bowel and bladder issues.

we are human. we are still people. we are not gross, we are disabled. we are struggling with a disability. if you make cutesy posts about canes and wheelchairs, you need to include people who wear diapers, people who need plastic pants, plastic bedsheets and absorbent bed pads. you need to include people who can't tell when they need to go. people who need/use catheters. people who have colostomy bags. people with stained and dirty clothing. people who have to change their incontinence products in public.

you need to include autistic and ADHD and ND and disabled people who feel unsafe without diapers. you need to include people with spinal injuries and ehlers danlos syndrome and muscular control disorders with need incontinence products and feel safe with them. you need to include people who like their diapers and not just tragic stories where it's never discussed or doesn't negatively impact their life and livelihood.

please include all disabilities in your disability positivity posts, and please be kind and treat all disabled people with respect and humility, including those of us with symptoms you may find "gross".

[thelupuslady]

[samuel-star]

What’s the point of the buttons if they DON’T WORK.

How the fuck can you claim to be an “accessible campus” if this shit hasn’t been fixed. I’ve been hearing other people complain about this bullshit for MONTHS. Literally like nine months. I’ve BEEN AT THIS FUCKING COLLEGE FOR NINE MONTHS. I’VE BEEN HEARING ABOUT THIS SHIT SINCE THE MOMENT I GOT TO THIS FUCKING CAMPUS.

[gracethyomen]

Happy First of May!!

Hello! May is EDS (Ehlers Danlos Syndrome) awareness month! As a person with suspected EDS and with chronic symptoms, this is a very important topic to me. EDS is hard to diagnose, and many patients fly under the radar of healthcare professionals which can cause them to suffer lack of treatment and forces them to live with their painful symptoms.

More Information about EDS and associated variations has been attached below and the infographs were originally found on an instagram account that I follow at the username the_chronic_chronicles

[melodymorningdew]

Imposter syndrome is a bench

Image description: drawing of a nondescript person with a tired/unimpressed expression on their face right next to a drawing of someone vibrating with excitement

Caption:

Me: "I must be faking my illness. I went on a walk yesterday."

Also me: "MY WALKER AND SHOWER CHAIR ARE ON THEIR WAY"

[murruspins]

[brain-n-body-in-disarray]

It's the little things that hurts.

The way people don't get you can't do the things they do, at least without costing you so much.

The way the doors of shops or buildings used to fly open at the slightest touch and now they seems to weight a hundred tons.

The way my mother in law asked me if I wanted orange juice and when I said yes she put two oranges and a old manual juicer. I was too ashamed to admit how much it would cost me to do it this way. So I did it, fighting the tears and then couldn't use my arm for a week.

The way I can't get out of my apartment sometimes because even if there is a lift, there's also stairs between my apartment door and the lift and between the lift and the building door. Why make a lift at all if it's not even accessible because of the stairs? (I can't move out. I have neither the money nor the spoons.)

The way the new building the local bookshop moved into makes things so much harder for me than the old one. There was so much unused stairs that I could sit and rest for as long as I needed. Now in the new building the stairs are so narrow you can't think of sitting on them, you'll just block the way. And there's no chair or bench anywhere in this 4 stories building. You just can't sit and rest there.

The way the city is getting rid of public benches and putting in their stead blocks of concrete with metal spikes on them to dissuade homeless people to sleep on them, which is wrong on its own, but also impacts disabled people. There's less and less places where to sit and rest during a walk through the city.

It's people laughing when I can't open a bottle of soda.

It's people gossiping behind my back, saying "oh they are a junky" because I takes so many meds, including the ones for the pain, but not only for that.

It's me being too ashamed to be disabled at a relatively young age and having an invisible disability. It's me being too ashamed to ask for accommodations. It's me being too ashamed to ask for a seat in the bus when all of them are already taken. It's the society making me ashamed of myself.

It's life itself, mocking me, and the world joining in the good laugh at my expense.

[cozycoffeereads]

Today’s disability topic is how America forces disabled people into poverty.

Today’s particular topic is how SSI keeps disabled people poor.

Let’s first go over what SSI is. Supplemental Security Income is a program that provides monthly payments to disabled people and elderly people who meet the financial qualifications.

SSDI stands for Social Security Disability and eligibility is based on work credits. This is for people who used to work before becoming disabled. We will not be discussing this today.

Here are the facts:

The average SSI payment in January of 2023 is $553 per month.

Disabled people on SSI also cannot have more than $2000 in savings and assets. This is severely limiting.

This is not enough to even cover basic needs. How can someone live based off those payments? Disabled people who live with someone such as a caregiver, family member, or partner receive reduced payments and risk losing their benefits.

Disabled people cannot marry without losing their SSI or losing financial assets.

Here is an eye opening article about forced poverty:

https://brownpoliticalreview.org/2022/01/government-mandated-poverty/

Also check this article by The Hill called “Lifeline for people with disabilities forces them to live in poverty”

https://thehill.com/opinion/congress-blog/3702528-lifeline-for-people-with-disabilities-forces-them-to-live-in-poverty/

[thoradvice]

HELP A DISABLED YOUNG PERSON GET A SERVICE DOG DURING DISABILITY PRIDE MONTH

If anybody can donate, the link is here

Hi, my name is Evan, I'm a 20yr old lesbian and I have Ehlers-Danlos Syndrome, a rare connective tissue disorder that is slowly taking my mobility. I am desperately seeking funds to purchase a fully-trained service dog, which run the cost of £9,000-15,000. I am student, too disabled to work and reliant on my small disability benefit, and simply cannot afford this. I have £5,000 in savings I can put towards, but I am asking for support to cover the rest.

This dog would be life-changing for me, as a mobility service animal can provide balance and stability when walking, meaning I can be more physically active and preserve my mobility. They can also help me with chores around the house, remind me of medication, and alert someone in an emergency; all of this would mean that I could finally have the independence to move out of my parents' house, something that has always been out of reach for me, due to my inability to take care of myself and household tasks, as well as fear of what may occur in an emergency

I know times are tough for everyone, but I would be forever grateful to anybody who could spare a little, or even share this <3

[chronicillnessfromateensmind]

saw this and thought i’d share

*picture not mine*

[chronicallydragons]

could someone pretty please explain to my autonomic nervous system that we are not actually under attack or being chased by tigers when we...*checks notes*...are sitting up?

[extreme-dyke-syndrome]

I was 24 years and 2 months old. I could walk for miles, go into mosh pits, and spend all day running around doing everything at once.

At 24 years and 3 months old, I couldn't anymore. Remember:

Physical disability can happen to anyone at any time.

Yes, even you.

[thelupuslady]

[neuroticboyfriend]

to anyone who's nervous about using or getting a mobility aid:

it's okay. disabilities are so difficult to manage, and the judgement from others doesn't help that at all. it makes things so confusing, and it can feel heartbreaking when you find something that can help you but realize others may not support it.

yet at the end of the day, you know your body best. nothing anyone thinks can change the pain, instability, weakness, etc. you're experiencing. your struggles are real. i believe you, and so do many people just like you, even strangers. we want you to do what's best for you.

i was really scared to start using a cane and a rollator at first, and some days the insecurity and fear gets to me. but for the most part, nowadays, i don't even bat my eyes when i go to grab either one.

past me was so afraid, and had to have a lot of courage to do this. but i'm so grateful past me did that. mentally, it feels more uncomfortable to go without my aids now. i still haven't jumped the hurdle on the wheelchair yet, but, that's ok. i'll get there.

all to say... today, you may be afraid. but tomorrow, maybe you can have courage - action, in spite of fear. and in some length of time, maybe you'll look back and be glad you made the choice you did.

because the choice is yours.

[lilliaace]

Fuck your " trans ehlers danlos syndrome hypermobility type"

As someone with ehlers danlos syndrome myself, they can fuck right off. It's not just "holy shit you're so flexible."

It's having a slow emptying stomach, so we barely eat and it's very easy for us to get constipated and chronic acid reflux.

It's sneezing and throwing your neck out.

It's sleeping wrong and being in agony the next day.

It's being in pain. Constantly. You know how it hurts to get hit with a sports ball? Imagine that happening. Everyday. No chance for the soreness to recover.

It's our hips, shoulders, elbows, knees, and/or ankles painfully dislocating on a daily basis.

It's our hands painfully over extending just to drive.

It's us needing to use God damn mobility devices as young as 12 years old.

It's us standing up the wrong way, causing our ankle to roll under us AND BREAKING BONES AND/OR SNAPPING THE LIGAMENTS IN OUR FUCKING FOOT