Invisible Illness - Tumblr Posts

She had Ehlers Danlos Syndrome.

and I am TIRED of pretending like she didn't! she's who I had as chronic pain representation before I had characters like victor from arcane. SHE was the first time I saw someone with a "normal" body uncontrollably writhe in pain, who could barely walk sometimes because of it, who had their every waking moment effected by it.

"Every cell in my body is torn apart and stitched back together, over and over every day" This line, the delivery of it, the combination of it with everything we've seen of her, I felt it. I have been feeling it. I will continue to feel it every day of my life. Sure she might have fictional illness number 34462398573948 but if that's the closest we can get I'll take it.

Is she a villain who falls under the disability being the motive for villainy trope? Yes. but she is at least sympathetic and they spend enough time with her pain to make it relatable. Do I love that she's a villain? absolutely not, but I didn't really get a choice in picking who I see myself in. They don't make characters with pain like this, at least not enough for me to cherry pick my favorite. Genuinly the only other one I can think of right now is Viktor from arcane, who (spoiler alert) IS ALSO A VILLIAN even if he's better representation / even MORE sympathetic than miss ma'am over here.

Temperature regulation issues suck so much and are so weird because it does not matter how many layers I put on, if the skin is exposed it will be cold. My fingers are like a full 20 degree difference than my wrist that's covered by my jacket. just move the warm blood over there omfg

People who have regular body heat don't experience cold the way we do. They apparently have this little heater inside of them that just, keeps their blood and internal organs comfy all the time. Being "cold" to them is just a chill on their skin. "If you're still cold after the first layer, put another layer on!" That doesn't work if you don't have the body heat to warm up those layers!!! it's just cold fabric on top of cold fabric on top of cold fabric on top of cold skin on top of cold fat on top of cold muscle on top of cold bones.

Then of course, even if there are FINALLY enough layers to make our skin warm. That does not mean it will make our bones warm. I could have an electronically heated blanket on me, and start sweating from it, and STILL BE COLD because it takes a lot of time for any amount of heat to pierce the surface level of my body & warm me in any ways that matter. So yeah, anytime you're interacting with somebody who doesn't have temperature regulation issues, and they offhandedly mention that they love the cold, just be aware they are never ever talking about our kind of cold. the kind that feels like an uphill battle. They're talking about something completely different and unique to them and their little internal heater. something some of us may never experience because we're always trapped in that fight with the air around us.

Local PSA: invisible disability does NOT mean you can live your life like a "normal person" invisible disability meant that if a stranger looks at you in public they wouldn't know what's going on.

Like if a wheelchair user were to decide to run into a corner store to grab a candy bar because they know that their legs can last that long without, the cashier wouldn't know.

Or someone with "mild" scoliosis walking upright through their shoulder leans slightly to the left. Maybe they just have bad posture. The lady in the next isle thinks to herself.

The person with EDS or POTS or whatever sort of condition wearing compression gloves out and about. Perhaps it's a fashion statement?

Or what about the people with intestinal issues? They can look like "normal people" too.

You never know what someone is going through.

You never know what they might need to survive or if they're on the edge of a flare up or even if they are currently going through one just by one look.

I think both disabled and non disabled need to realize this. You're not "no longer disabled" because you can "live without" disability aids. They're there to help you. To make your life easier. If living without a cane is going to make it more likely you'll fall over and hurt yourself, use the cane.

If you need to sit down to do dishes or cut vegetables because you need to save your legs for taking out the trash, sit down.

If you need a shower chair because you don't know if you'll pass out, use the shower chair.

People are going to judge you regardless for multiple reasons out of your control.

I'd rather they judge you while you're being safe.

You don't need to struggle to be "normal."

You can just be you.

However that looks for you.

Use your disability aids.

Having fibromyalgia and a love for Baldur’s Gate 3 has resulted in me blaming my brain fog on the tadpole

Okay, so I love sitting cross legged and it’s the most comfortable position for my body to be in except for the fact that it always makes my left leg fall asleep to the point that it’s extremely painful so I have to keep my leg out straight but that’s not comfortable and hurts other parts of me.

Does this happen to anyone else?

ID: “How long after waking up is it ok to take a nap?”

Being chronically ill means lying and saying “I’m fine” when people ask how you are, because if you’re honest about how you actually feel & your symptoms, it makes people uncomfortable.

You end up comforting them, when you’re probably the one who needs comforting 💗

I think it’s also worth mentioning if any of yall have had medical professionals as parents there’s like a 50% chance they were the type to say “rub some dirt in it you’re fine” when you very much WERE NOT fine. My mother was in med school for a long ass time during my childhood. I had to frequently fight and argue with her to get her to take me to see professionals, and some of that is due to her own internalized stuff. Dgmw I loved her then but I love her more now, as the woman who is actively working though unlearning these mindsets taught to her by her own abusive parents. I did love the woman who told me “I refuse to get you diagnosed and take you to a therapist, you’ll be labeled a crazy person the rest of your life and I will have failed you” when I was struggling with my PTSD, OCD, depression, and anxiety, but it was so damn strained that it hurt. I loved her, and trusted (mostly) her, but felt that I needed more help than she realized. And I did.

Some of you may be dismissing your chronic conditions as a result of a similar experience; I implore you, DONT.

Fight for a diagnosis. Doctors and nurses will dismiss you, and yes, it’s shitty, but it’s because of the huge amount of strain capitalism places on their shoulders. At the end of the day, 90% of our problems have a root cause of ✨capitalism✨, and it fucking sucks. They’re often overworked, and that’s definitely going to impact patient care no matter what someone says. That’s no excuse for their actions, or to allow yourself to give up on seeking treatment.

For example:

My brother got diagnosed with ADHD after my mom noticed he had trouble with blurting out answers and sitting still and talking way too fast when he was little.

My mom (prior to med school at the time) had to FIGHT to get me diagnosed when she realized I was struggling too, but it appeared differently than my brother’s.

It’s expensive and it takes time, and it’s frustrating as fuck, but getting the correct treatment can truly improve your lives. Don’t settle for feeling like shit and being brushed off about it. That’s letting them crush you under heel. You are worthy of getting better. Your struggle and pain is very much real, because you can feel it, and you’re trying to live with it, even they think it’s somehow “not”. No matter how long a road that is, you have a right to enjoy your life as best you can. Don’t let some doctors brush you off about that.

The effects of your chronic illnesses, whether is a chronic mental illness, or a physiological illness are NOT “all in your head”. Trust me when I speak from personal experience, you CANNOT mind over matter your way outta that shit. It will catch up with you eventually and you will be stuck trying to face that on your own when you not only can’t, but shouldn’t.

Don’t settle for feeling like shit your whole life. That’s no way to live. Don’t let people tell you what you’re experiencing when you already know it first hand. No one should be allowed to sit and suffer endlessly. That’s not right- it’s not fair- and you shouldn’t let that be your life.

YOU ARE WORTHY OF GETTING BETTER.

Not all illnesses and disabilities are visible. 💖

Digital illustration of a green chameleon sitting on a branch. There’s text that reads, ‘not all pain is visible.’

Hello people who are disabled and disability allies here is a cool app

https://play.google.com/store/apps/details?id=com.rollappinc.mobilityapp

Roll mobility it would be cool if more people used it so that there were more locations logged. It's a map app that shows the accessibility levels of certain places wherever you are and you can also log places you have been

It's super useful as most places are not super transparent about their accessibility and have hidden inaccessible places this app can let people know of those things in advance! The thing is though it works better with more people using it and logging the accessibility of places so if you can that would be great! Spread the word!

Thanks 😊👍

everything hurts and im sick of being sick

So many people need to hear this: plenty of disabled people will try their best to be sustainable but sometimes it's not possible.

I try my best to make sure my lifestyle is as sustainable as possible - hell, we were running the School Strike 4 Climate (SS4C) group in our area at 13.. it's not like we don't care.... but some things I need to live now are single use.

Pill packets, medicine bottles, syringes, TENS machine pads, certain safe foods, plasters, bandages, occasionally disposable pads when menstrual cups and period underwear aren't enough... If they came in a reusable and eco friendly option we'd be using it, but they don't.. a large portion of medical equipment requires disposable items.

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

"where is your pain"

chronically ill people:

hey disabled friends and anyone who struggles with eating :)

when i'm not feeling well and i'm super nauseous, i'll make what we've affectionately coined a 'pick plate' it's just a mix of foods cut small that are easy to pick up..and that smell good.

often it's enough just to trigger my appetite that i can eat (or the smell makes me sick). they're easy enough to do that they can be made sitting in a wheelchair or sitting down :)

i hope this helps someone!

sending love,

lillia

Fun fact: the word 'chronic' means it's lifelong! and the phrase 'chronic illness' means I'm stuck with it until it takes me out, or I take me out. So, to the woman bothering me at a close family friend's funeral today about 'whether it goes away' can shut the hell up. Chronic means I'm stuck with it. Telling me I can think my way out of it when I have things physically wrong with my body will not do anything. No, it's not going away, and praying and trying to force me out of my wheelchair won't do jack-shit (except make me want to break your nose). Trust me, I have tried almost everything under the sun by now.

Besides, I've come to the conclusion if god/s exist, they decided I'm better used as a disability advocate than wasting their precious time on fixing the fact I'm in crippling pain constantly :DDD

disabled system asks: 1-4, 10!

1. Is your disability invisible, visible or both?

Both: invisible in the way that there appears to be nothing outwardly wrong with us (as doctors kindly keep reminding me) but visible in the way that we use mobility aids almost all the time. We wear a sunflower lanyard in public, and use a mixture of a cane, crutches and a wheelchair depending on the day.

I wish to add, as someone who has looked able bodied, and disabled in various fonts.. people don’t treat disabled people better if they’re in a wheelchair or visibly ill, and some are arguably worse to young wheelchair users.

2. Do you use mobility aids? If so, what for?

We do! As said above. We have a mixture of issues (ranging from endometriosis to POTS to hEDS to fibromyalgia) that create.. well, a mixture of issues XD. We’ll use the wheelchair on bad pain and fatigue days and carry the crutches.. or, on better days, just use the crutches to take some pressure off our knees, and aid as balance. As cool as our cane looks (photos later), we stopped using it as it was giving us pretty severe hip pain on one side from the way we had to lean to get support from it (still my fav visually though).

3. Is there a specific alter/part/headmate who fronts to deal with pain? How do they manage it?

Yes, that would be me. I split when we were very young to deal with injury, particularly blood. As our chronic pain increased, so did the amount of time I spent fronting, until I slowly became our most common fronter. Sucks though, cuz that was never meant to be my job, I was supposed to stay sitting on the sidelines only appearing to deal with first aid and other protector things. Instead, I’m here, and somehow I make it everyone else’s problem.

My appearance as most common fronter got us outed as a system because I’m so drastically different from the common fronters of the time. {its a little more complicated than that but you get the idea}

I manage it with a combo of pain killers (including medicinal CBD, THC, and flower, pregabalin, panadol, ibuprofen, codeine and morphine amongst other things… happy to answer questions about any of them if you’re curious), dissociation, weaponised tears and sheer fucking willpower… I wish I could say sheer fucking will was still working, but it is not very well anymore. There’s only so much one can deal with, and our pain has been getting steadily worse for the past few years with very little support (most of our illnesses have no cure, only management). We’ve reached the point where our doctors and specialists aren’t sure what to do with us and are wondering if there’s something they have missed…but uh, our tests, bloods and results are coming back clean. Looking into that at the moment lol.

4. Do you experience pain variety based on who’s fronting?

Oh hell, do we ever. Certain members of the system *cough* Kyle *cough* have dreadful pain tolerances - I always know when one of them is cocon because our pain skyrockets into impossible levels, even if I’m trying to keep it under control. Certain other members of our sys have average pain tolerances, some age regress to cope, others just curl up in a ball and sob.. depends on the alter - and the cyclical nature of parts of our pain make it difficult to manage, and to recognise how each alter is affected. Plus, it’s hard to compare pain tolerances when each of us have no other/barely any frame of reference.

10. Do you decorate your aids?

YES. We use a combination of spray paint, cheap nail polish, stickers and in the case of the wheelchair, holders designed for prams and bikes (water bottle holder, clips, bells, reflective stripes etc).. aids start out super boring and for us, decorating them and making them prettier is the only way to make them tolerable. And political - if the government is going to make our life into a political ‘issue’, we will turn right back around and make them aware of our existence ;)

the pic doesn’t grasp it very well, but we painted the chair’s spokes rainbow (and they look super cool when we’re driving it)

Thanks to @disabled-systems for the game <33

ily disabled people

ily disabled people who are dependent on aids

ily disabled people who are too scared to use aids

ily disabled people who have been bullied out of using aids

ily disabled people who feel like they don't need many aids or any at all

ily loud disabled people

ily quiet & mute disabled people

ily disabled people who "make being disabled your entire personality"

ily disabled people who are punk, goth, emo, scene, grunge, metal, vkei, decora and any "wierd" fashion style (especially if you decorate your aids to match you're the coolest)

ily creative disabled people

ily disabled activists

ily disabled people who need a helper

ily disabled people who want to be independent but can't be

ily disabled people who love your independent

ily disabled people who wish they could have a helper

ily disabled people who feel like you're not disabled enough to be valid

ily older disabled people who help younger disabled people

ily young disabled people who help older disabled people

ily overweight disabled people

ily underweight disabled people

ily disabled people trying to lose weight for health

ily disabled people trying to gain weight for health

ily disabled people with invisible disabilities

ily stigmatized disabled people

ily disabled people who don't feel like they fit into any of these phrases

ily disabled people !!

Vent

We have someone coming to look at the house tomorrow and preparing for it is a stark reminder that I'm not able bodied and haven't been for years.

It wouldn't be as stressful had I been able to work on stuff the whole weekend. But my new meds basically made me comatose the entire weekend from how sick they made me so nothing got done. At all.

Stuff that ableds can easily maintain, are things that I'm festering in. Our dishwasher broke, and with my husband working himself to death and my pots and audhd and tbd fibro, I just can't. I can't keep up.

We just threw away so many dishes because they weren't salvageable. I just filled the bathtub with dishes that were, to soak and scrub later this morning. My entire body is screaming in pain from scrubbing one stack of plates. One. Stack. Of plates. That's like, maybe a dozen?

My hands are cramping up and soon I won't be able to use them for a bit until they unlock. My entire back/shoulders are locking up as I speak.

I hate this. I fucking hate this. We even use disposable a lot but there are times disposable is too flimsy for the meal we have. Or it requires bowls that are sturdy.

I am getting laundry put away, but immediately refilling the baskets with the dirty. The washing machines are going nonstop. But sitting and folding hurts my entire body so much. Hands and back/shoulders mostly.

If we could afford a weekly cleaner/some laundry help we would. In a heartbeat. But we can't. We aren't even paycheck to paycheck. We're always having to shift stuff around and with the year we've had? Big ticket items of the house breaking and multiple illnesses on top of chronic illness.... we just can't.....

I hate it so much.... we need help. But there is no help right now.