#hEDS or chronic pain

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[p0is0n-is-th3-cur3]

Having dreams crushed by disability is such a deeply traumatic experience, the realization that you’ll never be able to do the thing you want most in life because your body isn’t able to handle it. Waking up the day after you received the news and feeling that utter sense of heartbreak in your chest. Watching people go on and do those things while you sit on the sidelines, forced to watch bitterly. That feeling of being trapped, imprisoned by your inability to do what you love. The grief, the anger, the sadness. All because your body doesn’t allow you to.

[im-traumatised]

Living with chronic pain.

[stellaltumi]

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.

[sillyfroggremlin]

people with chronic pain and chronic fatigue will be like why does it hurt and why am I so tired

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself through if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

[a-sassy-bench]

breaking news disabled people aren't using their disabilities as an excuse because it turns out it isn't an excuse it's a state of fucking existence

and existence is everywhere all the time no matter what even if you wish it wasn't

.

[love-me-love-my-weirdness]

I think the reason why people want to know what's "wrong" with disabled people is because they want to reassure themselves.

They want you to say you were in a horrific accident or that you have a well known and treatable disease because they think they can stop it happening to them.

They think their health is a given because they aren't a dangerous driver/ an alcoholic/a drug user/obese/an unhealthy eater etc. Obviously this isn't true but it's easier for them to think of it like that.

Until one day they meet someone who did nothing. They're not really asking "what's wrong with you". They're asking "what went wrong" because they think they can avoid it.

So when they meet someone who made all the right choices, who was healthy, who was safe and one day woke up sick and never got better, it scares them because some part of them realises that it could happen to them.

They can exercise and eat a balanced diet and be as careful as possible and it doesn't do a thing and they can't do a thing about it. That terrifies able bodied people.

People like to look for something or someone to blame and they hate it when there's nothing there.

[chronic-counter-user000]

dear parents, if your child has "seemed fine this entire time" but is now seeking out diagnoses, mobility aids, medical help, more doctors, and is sharing their pain more. do not fucking shut them down? even if it ends up being nothing, showing them that support through all of that will seriously help them. if it ends up being something and you're a bitch to them, the joke will be on you and that strain on your relationship will never go away because. you didn't listen.

listen to kids. we tell you what we need, it's not that hard.

[raging-guanche]

my mom just got mad at me because "i have to rest every time i do the littlest thing even eat" is almost like youre chronically fatigued when you have chronic fatigue

[chronicallydragons]

Anyone else with chronic pain ever get really absorbed in a project and dissociate from your body while you're working but then you finish and you come back to your body and you're just like AAAAAAAHHH! WHAT'S WRONG?? oh yeah. The horrors. Never mind

[enbycrip]

It me

[dandeleon]

it mcgucket monday (da WHOLE family here‼️)

[eggings]

happy disability pride month to anyone who has a disability from a condition that “usually isn’t a disability”. happy disability pride month to people with disabilities that aren’t often understood by able-bodied people. happy disability pride month to people who don’t have any official diagnosis yet. happy disability to people whose “labs look completely fine”. wishing you peace this july.

[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".

[pussysidon]

Living with a disability, especially a progressive or dynamic one is so fucking stressful. I don't know whether I'll be able to do things I can do now in a couple of years or even a couple of months. Maybe today I'm up and dancing but tomorrow I can barely leave my bed. I'm already grieving the things I know I won't be able to do in the future and it's so, so so so hard. The worst part is that there's nothing you can do but try to enjoy life right now and hope you can keep doing what you love