#invisible illness problems

[ashwolfe3450]

#spoonies #spoon theory #spoonie #dnd #mental health #actually disabled #chronic illness #ehlers danlos problems #fibromyalgia #fibrolife #fibro things #ehlers danlos syndrome #hypermobile ehlers danlos #invisible disability #chronic fatigue #pots

[death-is-moist]

Walked in public with my crutches for the first time and it felt so good!

#chronically ill #pots syndrome #chronic illness #pots #potsie #invisible disability #invisible illness #fibro problems

[imgae-insertshockedgasps-16]

dear people who sell symptom trackers

or menstrual trackers, or doc visit trackers, or food trackers, or water trackers, etc etc blah blah

hi. hello. pls make your shit more accessible.

this stuff is marketed towards disabled people, and often times made by disabled people, so idk why it's so difficult to make it accessible but here we go

pls have a version available with less swirly fonts.

pls have a clear picture of the pages so that the content is visible and not just the colors.

pls have large print versions available.

pls have versions with less busy pages.

pls have larger spaces for writing.

pls pls pls pls pls pls pls make your shit actually accessible.

do you have to do all of this? no. does everyone have to do some of it? i mean, it would be nice, but no. the problem is when no one does any of it

i keep looking and looking and it's "a5 printable"! it has "eight colors" and "aesthetic design"!

but the pictures are from too far away, i can't read them to asses if they're what i need/want, and when i try to zoom in the cursivey fancy fonts (that i'd have trouble with anyway) get pixelated and illegible.

and the words are tiny, or the spaces to write in are miniature and i wouldn't be able to fit anything, or any number of other problems.

please, please, someone, anyone, make it widely accessible first and then aesthetic, or have different versions available

#like i love the sunflowers but i am physically incapable of writing in those spaces #disability #disabled #physically disabled #mentally disabled #actually disabled #physical disability #invisible disability #chronically ill #chronic illness #chronic pain #accessibility #etsy #well mostly etsy #but the problem doesn't stop there

[minimallycreative]

i love how sometimes, despite all the medical advancements of the 21st century, the only thing that relieves pain is sitting/laying/standing in a weird position because it places/doesn't place pressure on certain spots

#i spent the last 30 to 60 min with my face planted on to my bed to help the migraine go away #it worked and my back got a nice stretch as well #sometimes the solution is becoming a frog and i love that #chronic illness #chronic pain is a bitch #chronic life #chronic pain #chronic fatigue #chronically ill #invisible disability #disabled #disability #disbaled #physical disability #disabilties #cpunk #physically disabled #cripplepunk #queer cripple #cripple punk #crip punk #cripple shit #cripple life #cripple posting #cripple problems #c punk #pots syndrome #pots awareness #potsie #chronic disability

[tumble-tv]

The body isn't body-ing

#chronic illness #chronicpain #chronic disability #other chronic illness bs #chronic disease #chronically ill #disabled #disablity #fibromyalgia #undiagnosed chronic illness #chronic disorder #chronic pain #physical disability #invisible disability #disability #physically disabled #invisible illness #cpunk #crip punk #cripple life #cripple problems #cripple punk

[thecovenhouseco]

Slowly realizing that you may not be able to work anymore if you actually want to treat some of your disabilities feels like you’re being crushed like a hydraulic press. I’ve worked so hard, and I’m afraid that it was for nothing. So if you’re struggling with the same thing, I’m proud of you for all that you’ve done.

#disabilties #dissociative identity disorder #did osdd #did system #ehlers danlos life #ehlers danlos zebra #ehlers danlos problems #ehlers danlos awareness #hypermobile ehlers danlos #potsawareness #pots #mcas #the terrible trio #invisible illness #invisable disability #ugh why

[rainbowchihuahuabunny]

I hate being in this disability grey space. I'm well enough to work most of the time but that means I can't do anything else in my life. Disabled enough not to be able to keep up with others my age.

I'm constantly in pain and exhausted but well enough to have to push through to keep a job so I can afford to live and afford pain medicine and braces. I just subluxed my hip and am stuck in my wheelchair but I know I can't use my wheelchair at work cause I need my hands free. So, here I sit with a heating pad on my hip, sobbing and begging for the pain meds to help.

Just wish I were either fully abled or disabled enough to get help. Instead I'm stuck here. In the disabled grey space

#cripplepunk #chronic illness #chronic pain #chronic fatigue #chronically ill #ehlers danlos syndrome #pots #potsie #spoonie #fibromyalgia #actuallyautistic #autipunk #actually disabled #invisible disabilities #part time wheelchair user #ehlers danlos #ehlers danlos problems #ehlers danlos zebra #hypermobile ehlers danlos

[not-your-pussikat]

Suffering from fibromyalgia is a bit like playing Russian Roulette without the dying---you never know which body part will become unusable from overwhelming pain on any given day.

#fibromyalgia #fibro problems #fibro warrior #chronic pain #chronic illness #invisible disability

[50044w44s]

Hey, i see that you're drowning. Here's some arm floaties, hope they help.

Oh, I see they are really helping huh?

"Why is that person using arm floaties? they're not drowning..."

I see that you're not drowning, you're doing good so I'm gonna take the arm floaties away from you. Wait, why are you drowning again? You were fine one second ago, you must be faking it.

"Can I please have some arm floaties?"

"But you haven't entered the pool yet."

"Yeah but I can't swim, I know that I can't swim, so some arm floaties would really help me not to drown."

"You're asking for arm floaties without even trying to swim, you're just lazy and you want more help than the others have, the others are doing just fine..."

"I don't need to get into the watter to know that I can't swim. You're telling me I can't have arm floaties unless I'm actively drowning? You won't give them to me even though I warned you I will drown?"

This post was never about arm floaties.

#disability #accomodation #autisim #neurodivergent #adhd #dissabled #invisible disability #disabilties #autistic things #this needs to stop #actually autistic #autistic adult #autistic experiences #adhd experience #adhd problems #adhd brain #burnout #meltdown #neurodiversity #neurodiverse stuff #mental health awareness #mental health #mental illness #support #support needs #high support needs #low support needs

[professionalspoonie]

Doctor's Appointment Guide

Dealing with chronic illness and doctor's appointments can be a tough combo. So, how do we make it a bit easier?

For many, appointments can be triggering, so consider doing something that brings you joy before heading in—talk to a friend, play a video game, or grab your favorite breakfast if time allows.

Ever find yourself in the doctor's office with a foggy brain, struggling to remember what you wanted to discuss? Note-taking is a life saver! Jot down your points, bring your notes to the appointment, and voila—no more leaving feeling like you wasted a trip.

And let's talk preparation. Bring a list of your meds and symptoms—those lists can get long, and it's easy to forget. Prep beforehand to avoid the frustration of trying to recall that one nausea med you forgot the name of.

Consider bringing someone close to you —a family member or friend. They can offer emotional support, help you advocate for yourself, and be that extra set of ears to catch what the doctor says.

Dressing for a doctor's appointment is also important. Comfort is key, layers are your friends. Offices can get chilly, and having a tank top underneath makes life easier if they need access—especially if blood needs to be drawn.

Speaking up for yourself can be tough, trust me I get it. If it's a struggle, practice with friends or family. Maybe have them tag along so you feel more comfortable speaking up for yourself.

Post-appointment, wind down and digest the info your doctor gave you. Write down tasks like picking up meds, scheduling follow-ups, or arranging referrals and tests.

These tips work for me—may not all fit all of your needs, but hey, sharing is caring. If you have anything that helps you personally feel free to share and help someone out! Hope all your appointments go well :)

#chronic fatigue #chronically ill #disabilties #disability #fibromyalgia #fibro problems #chronic illness #chronic pain #doctors appointment #invisible disability

[asickandtirednobody]

I loathe the day that my hands stop me from playing guitar.

I had a custom guitar made for me, I spent so much time and money upgrading it, only to not be able to play it anymore because of the neck shape.

It was such a beautifully built guitar. Solid and had decent bones. I put in my dream pickups that I spent six months to find the pair.

I had to sell it because my hand and wrist weren't able to play for more than two minutes without two days of hand pain.

At least the person who bought it will love it, seeing him smile when I dropped it off, he was so happy.

My loss is your gain good sir.

He was super nice also and told me some guitars that would fit my hand nicely.

10/10 best customer 👌

He funded a guitar that fits in my hand and is a bad ass guitar, though, so it all worked out. Sounds nice in recordings without having to do any upgrades.

#chronic illness #fibromyalgia #chronic pain #hand pain #wrist pain #wrist injury #hand injury #hand is fucked #chronically ill #fibro problems #invisible illness #autoimmune disease #disability #physically disabled #i hope i can play guitar until the day I die #my loss is your gain brother #guitar player

[trapped-in-a-burning-body]

I recently started using a cane everyday and so my previously invisible disability is suddenly visible. I also started medschool. It's been a while since I was properly social so I have questions...

People don't walk next to me. And if they accidentally do, they leave to walk next to someone else even if that means squeezing in three people on the sidewalk. No one talks to me if it's not to ask me "what's wrong". I have really tried to make an effort and talk to people but I don't know what to do.

Can it have something to do with my disability and my cane? Like they're scared to say the wrong thing? Or maybe it's because they've sensed the autism?;)

#chronic pain #fibromyalgia #spoonie problems #ableism #med school #med student #invisible disability #physically disabled #autism #chronic illness #cane user

[pinxyreaps]

Honestly with the way things are looking nowadays I should just tell people I’m a wizard with a staff rather then just telling them I’m disabled. I feel like they’d be more understanding then.

#chronic illness #chronically ill #chronic pain #epileptic problems #invisible disability #invisible illness #fibro #disabilities #fibromyalgia #medical stuff #if you know you know

[chronicsymptomsyndrome]

I follow tons of disability/chronic illness/mental health tags and I keep seeing memes or infographics without alt text or image IDs. This is not okay for content of any subject matter, but its beyond ridiculous for these spaces in particular. You can’t call yourself an advocate if you are declining to use accessibility tools like this. There are absolutely no excuses, especially with the technologies we have now. Most devices can read and copy the text out of any image, for example.

Basically if it’s not worth including everyone, it’s not worth posting. Make it accessible or don’t post it. Thank you

#accessibility tools #disability accessibility #disability advocacy #alt text #image id #text id #screen readers #disability accommodations #neurological disability #physical disability #invisible disability #vision impaired #sight impaired #blindness #accessibility #inclusivity #disability rights #disability community #disabled community #chronic illness community #disability vent #chronic illness vent #neurodiversity #disability problems #disabled rights #disabled things #queer disabled #disability representation #accommodations #disabled representation

[tumble-tv]

Having arthritis at 17 is funny, because I tell people and they're like, "oh, my grandma has that! she takes X, Y, Z and it helps her a lot!" Your grandma and I do not have the same arthritis. Her yoga and good vibes are not going to help me.

Then there's the whole thing of finding rheumatologists near me. There are only 2 in my general vicinity. 2 that take pediatric patients. The rheumatologist I am not currently seeing is about an hour away, so when I tell people about how awful my rheumatologist is at the moment with medications and care, they always say that i should go to another doctor when I literally cannot.

Then there's the whole thing of my doctors refusing to help me with my chronic pain because it's apparently all because of my arthritis, which has been in remission for 4 years now, so no, it's not my arthritis. Arthritis medications will not help my pain, and they refuse to acknowledge that

#little bit of a rant #juvenile arthritis #arthritis #other chronic illness bs #chronic disability #chronic disease #chronicpain #chronically ill #disabled #chronic illness #disablity #chronic pain #invisible illness #physical disability #invisible disability #disability #physically disabled #autoimmine disease #invisible disease #cripple life #cripple problems #crip punk #cripple punk

[chronicallyuniconic]

I feel guilty because to them it's "only" chronic pain & fatigue.

It's not life threatening, even though it can get there.

It's not really treatable, just sit-withable.

It's not something like cancer, that can be cut or irradiated out of you.

It's not like I have to do anything other than sleep & try to cope with the pain levels.

I feel guilty because my illness isn't seen as valid as others.

I feel guilty because funding is so minimal and research so sparse, i am only able to lay in bed.

I feel guilty because my illness isn't seen as worth caring about and by extension, me.

I feel guilty about their positive outlook when I used to have that too, but they're getting treatment unlike me.

I feel guilty for having bad and worse-than-bad days, when I used to fully function like my friends and family.

I feel guilty because nobody gives a damn about M.E

#does this make sense

#chronic life #chronic pain #chronically ill #chronic illness #chronic fatigue #fibromyalgia #myalgic encephalomyelitis #chronic migraine #invisible disability #sorry for being depressing #no spoons #chronic pain syndrome #physical illness #life #m.e #me cfs #me/cfs #fibro #out of spoons #spoonie problems #spoonie life #disabled #disability #i feel so guilty #spoonie #chronic fatigue syndrome #just a thought #does this make any fucking sense