Invisible Disability - Tumblr Posts
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.
Dear young disabled people,
You didn't deserve this.
Ableism sucks and I wish there was free medical support for everyone (and shorter wait lists).
It's okay to ask for help. It's okay to grieve. It's okay to be angry. It's okay to be sad. It's okay to mourn what you lost to your disability.
On the flip side, it's okay to have fun with it. It's okay to decorate your mobility aids, wear fun disability awareness pins. It's okay to be proud of your disability.
But it's okay to hate it too.
Celebrating your disability, and the disabled community, while hating what your disability puts you through are things that should, and can coexist.
Sending love
~ 💜
eighty five minute holds to talk to disability services is insane
...their music choice is so bad too
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
Sending love to anyone whose disability has changed the way they look.. whether that be through surgery, medication, shifts in weight, using mobility aids, being limited in the ways you can exercise, having a colostomy bag added, glucose monitors, prosthetics, or anything else that's changed or added to your appearance
It's hard having your body change, especially if it's in a way you don't like at first — whether your disability has given you scars, stretch marks, spots, marks, or altered your appearance entirely: sending love, you've got this.
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
This helped me realize why I prefer this site over the other social media sites.
I love Tumblr because every time I've tried venting about ableism on another site, people have treated me like I'M the problem. Their suggestions are always like "have you considered that maybe you're overreacting? You need to change your attitude" when I ask for advice on how to get people to stop treating me like body horror. Meanwhile, if I mention it on Tumblr, everyone is immediately like
[ID: A screenshot from the movie Shrek where a woman is shouting "the chair! give him the chair!" /End ID]
yer local type one narcoleptic >:)
a lot of people think narcolepsy is just ‘being sleepy’ or even ‘being lazy’ but it’s so much more than that. symptoms of narcolepsy include:
extremely intense, vivid dreams/nightmares. narcolepsy is defined as a disorder in which most of, if not all of your sleep is REM sleep. this is what causes daytime sleepiness; your body is NOT RESTING CORRECTLY and is physically incapable of doing so. we have little, if any deep sleep.
sleep paralysis and hallucinations.
cataplexy, found in type 1 narcoleptics. cataplexy is very similar to a seizure, though it is not classified as one. episodes of cataplexy are usually (but not always) brought on by strong emotions, and cause you to lose control of different parts of your body, ranging from muscle limpness to full on collapse.
EDS, or excessive daytime sleepiness. often times, narcoleptics will suffer from something called a sleep attack, where they fall asleep uncontrollably. this can happen while working, driving, or doing hobbies.
increased risk of all cancers and other (yes, narcolepsy is suspected to be an autoimmune disease!) autoimmune diseases, as well as an increased rate of mental health issues. ADHD, diabetes, heart disease, and depression are often co-morbid with narcolepsy. tying in with this, we have an increased rate of suicide.
insomnia due to the nature of extremely fragmented and disrupted sleep. intense and vivid nightmares can often make WANTING to go to sleep difficult as well. pretty much any other sleep disorder can be co-morbid with narcolepsy.
decreased cognitive function. memory issues are common in people with narcolepsy; even a mild case of narcolepsy can be compared to going 48-72 hours without sleep in a normal person…except its every day.
extremely poor quality of life. [1] [2]
not a symptom, but it often takes narcoleptics several years to be diagnosed w this disability; it is EXTREMELY under-diagnosed, and testing and treatment are very expensive even with insurance.
there is no cure for narcolepsy, only treatments. the only treatments we currently have are various stimulants (adderall, modafinil, ritalin, etc) or just straight up GHB. many people cannot tolerate these medicines, making treatment even more difficult.
(keep in mind that i am writing this post from an american perspective; i know treatment is often more accessible in some ways in other countries, though i also know it can be worse/harder in different ways too.)
Asked my doctors about POTS
ii had an orthostatic test and then, because my numbers were 'fine', ii was told its just anxiety and ii need to exercise. ii cannot walk longer than 20 minutes without needing to sit down, just rolling out of bed makes my head spin and my heart beat faster. ii cant take a shower without feeling like i'm going to faint. i'm tired and physically exhausted 24/7 no matter how much or little ii sleep. ii cannot exercise, if just going to the bathroom is too much how do you expect me to? it is not my anxiety, i've had generalized anxiety disorder since the 3rd grade and it has NEVER made me feel this shitty.
ii should not have to defend myself and fight for a diagnosis, but theres nothing else ii can do.
Help me afford mobiliy aids!
any donations would be greatly appreciated, if you cant donate please share!
love you tumblr community 🫶
hey im back, its been a couple months since ive posted this ii think. and ive only raised $12 :( if you can please donate or share ii really need it.
Help me afford mobiliy aids!
any donations would be greatly appreciated, if you cant donate please share!
love you tumblr community 🫶
II GOT MY FIRST CANE!!!
its been helping me so much already! im thinking of naming her Cherry Tempest (cherry just bc, tempest from mlp movie)
who wants to start a group chat on discord where we play roblox together n talk about fandoms we're in or cats or gender or being disabled/autistic and going on call n spamming the others to get on and having really deep intense conversations when we should be sleeping
CANE USER REPRESENTATION!!!!!
Hitch the mouse!
(HE/HIM) 🐁🏳️⚧️🧀
you would think after watching a dog momma give birth to 10 little babies that ii would have had some philosophical revolution, like a deeper understanding on motherhood and life and death.
but all im thinking about is puppies lol
here's momma :)
GUYSSSS HELPPPP
I'm stuck on the golden wasteland temple !!! it won't let me see the constellation and some of the spirits are stuck like that. what do ii do??
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 !!
happy disability pride month to every disability! remember there is no such thing as disabled enough use the aids you need
Someone just told me that I should never have been on ADHD meds, since “ADHD isn’t even dangerous”. And that made me realize that most people genuinely don’t know how dangerous having ADHD can be. ADHDers are more likely to get into car crashes. We experience higher rates of anxiety, depression, self harm, and suicidal ideation. We forget to do basic things like eating and taking care of ourselves, so we’re more prone to getting sick and even developing serious diseases. We’re also at risk for developing eating disorders. We’re impulsive, which can lead to us getting into accidents and dangerous situations with other people. Kids with ADHD make more visits to the hospital than neurotypical kids. We’re more likely to get into a bad relationship or to have an abusive partner. ADHD can destroy relationships, your social life, your grades, and your career. It makes you more likely to smoke, drink, or do drugs, and people with ADHD are more likely to get into trouble with the law. Some people suggest that 20-40% of people in prison have ADHD. ADHD literally lowers your life expectancy. And I want people to take it seriously.