finley ed / six !

DONT CALL ME “DIFFERENTLY ABLED” OR OTHER BULLSHIT TERMS THE ABLEDS ARE PUSHING.

DISABLED ISNT A DIRTY WORD.

CALL ME DISABLED.

IM DISABLED.

november 7th 2021

I’m starting to forget what it was like to be healthy. It’s something I never envisioned happening. Believing for so long that this illness was short term, the reality now looms over me like a monster I can’t quite run from.

There’s something so horrid and cruel about the way i’ve been forced to watch myself decay, i’ve had a front row seat to my own deterioration for years now.

Sometimes I cant quite decide if the worst part of this condition is my own physical destruction or the mental toll it takes.

I’ll be honest. The nights where i feel how i used to are getting further and further apart.

There aren’t many times as of late where i’m not gripped with the primal urge to just claw my own muscles out from under my skin.

I think at this point i’d do anything to get rid of my pain.

I’d do anything to get rid of the shadow of myself that still taunts me, reminding me of what i used to be and what i am now.

Even as i’m writing this, on the bus on the way home from a job i shouldn’t be doing, all i want to do is rip off my limbs and sob. My shoulder is dislocated and i can feel my kneecap slipping, but i’ve still got 20 minutes left of this journey before i get off the bus and walk home.

I’ve taken to praying to a God i don’t quite believe in at times, desperation does weird things to people i guess.

All my pain is so raw and full force at all times, and when i’m not in pain im completely numb, effectively running on complete autopilot.

At work I stand for hours with no breaks, racing back and forth between desks. I shouldn’t be able to do it, but i do.

My legs grow numb after the first hour, my brain when i talk to customers is just replaying my training, a subconscious script that starts to protect my own brain from becoming overwhelmed.

Sometimes i feel like i take a backseat in my own body, but then again, i don’t have a choice.

But that autopilot comes at a cost, the cost of my limbs when i finally get home.

Sometimes it stops before i even get on the bus, my legs grow heavy and i wonder how long i can keep going before i collapse on the linoleum.

Other times my body waits until i’m finally in bed, when i’m still for the first time in the day. Then it hits full force. The cost of existing and working in this body.

The pain is so raw and all consuming i can no longer even cry. It chokes me, in all honesty. Even minor movements become too painful to bear and im left to deal with it alone in the darkness of my room.

Although i’m not sure id rather have people see me in that state, i have a reputation to uphold. The reputation of being able bodied and perfectly capable, the role i play daily, like a tired actor on stage performing for the hundredth time.

It’s tiring in itself, keeping up this facade.

I make myself palatable, i swallow down the pain, the truth of what i face.

I put on a mask to make myself more appealing. After all, the last thing i want to be is a burden.

But I’m watching myself decay in real time.

october 18th 2022

It has been over a month since the Daily Mail published an article plagued with disinformation, fear mongering and hatred. It has been a month since I had to read an article that has since caused irreversible damage to my community. Damage that has gone unrecognised by the very people who platformed that mess.

So here’s my question for the Daily Mail and Emma James herself: Are we addicted to being sad? Or are you just addicted to trying to turn our lives into inspiration porn?

They want to paint us all as liars, as ‘competitors’ in a competition of their own creation.

You see us showing our true selves, exposing the hardships that we so often hide from the world. You see that and your mind jumps to faking, you’re so used to being able to write things off as just ‘teenage girls being teenage girls’ that you refuse to see the bigger picture. You refuse to accept that we are simply trying to exist, to show our realities, to bring awareness to conditions that are so often swept under the rug.

You want to paint us all as people who are competing over who is sicker, we’re exaggerating and lying to win what exactly? What, aside from maybe some internet clout, would we gain from faking illnesses? Because I can tell you now, we lose a lot more than we could ever gain.

Do you want to know what happened when I got ill? I lost friends. I lost opportunities. My relationships were irreversibly damaged. Everything I once had came crashing down around me and doctors did nothing. But do you know what they did do? Those doctors dehumanised me, they blamed me for something out of my control, they refused to listen. They turned me against myself and manipulated my own mind, they tried to paint me as a hormonal, fat liar. That went on for years. I was 14. I was severely ill.

So Emma, do you actually know how hard it is to get treatment? To get a diagnosis? How hard it is to actually be admitted to hospital? How hard it is to get medical professionals to listen to us? Do you realise the damage you’re causing outside of the internet?

This has real world consequences.

We aren’t “addicted to being sad” we’re just sick of fighting for basic treatment and respect, sick of fighting to be believed. We’re SICK.

You talk about doctors being concerned about how people are going to convince themselves they’re sick/sicker than they are and how diagnosis’s of “rare” conditions are gonna rise? They shouldn’t worry about that, because getting a diagnosis before this was hard enough.

Do you know what’s changed?

Do know why that number may rise?

Awareness. People are going to see videos and realise their symptoms match. It can happen with anything.

I’ll play along, say maybe some people genuinely are “faking” but that doesn’t take away from everyone who will see those videos and finally have some idea of what might be going on with their bodies and urge them to seek support.

Awareness of a condition can be the bridge between suffering, pain and lasting damage, and actually getting help. It can be the stepping stone to prevent deterioration, to prevent severe illness and even death.

And me personally? How did I start the process (fight) of getting diagnosed? I researched. I saw a medical article about someone with my condition and everything clicked.

That was before tiktok. I didn’t see this on social media. I saw it on google. I spent weeks matching my symptoms up and researching until I was confident enough to approach doctors, people who had so quickly written me off on the past. Traumatised and gaslight me despite being the very people I was told would help me.

Because you see, people will always be influenced by what they see online, and sometimes that influence is from actual sources, medical sources. The news. It’s not a tiktok problem. It’s not the creators problem. And it never has been.

The spoonie community is made for people to share experiences, to talk to someone that understands, that believes you.

When friends, professionals and teachers turned their backs on me, the community listened.

The community actively works to make sure people don’t lose hope, that people don’t give up. The community is a beacon of positivity, but not in the “a happy mindset will fix everything” way, but a way that shows you’re not the only one fighting. That you’re not alone.

We share stories, positive and negative. We share tips and tricks to alleviate symptoms and make life easier. We share support through just the fact that we believe each other, because that’s a rare thing to experience, to be believed.

Sure, some people may compete over who’s sicker, but a few bad apples is never going ruin the whole bunch. You can’t generalise an entire community based on a few people you disagree with. Especially not when it’s a community of people that have been beaten down so much.

We’re all there through a shared experience of being emotionally battered by people, whether that be family or friends or doctors. We’re all there to just seek support.

We’re all there because we’re tired of our conditions and experiences being written off as “anxiety” or “just puberty” or whatever other phrase they use to write us off.

Reading this, you have to remember, you can become disabled at any moment. At any time your life can change and I hope, for your sake, Emma, and for our community, that it doesn’t.

But you know what? Even if, god forbid, you become disabled, do you know what will happen? You will most likely be met with open arms.

That’s because the community is built on acceptance. It’s built on understanding. It’s built on love.

You act as if this online community is new, as if it’s this new fad that’s come along due to internet fame that's so easily achievable nowadays. But the community has been speaking out about our struggles long before tiktok existed, you just didn’t see it, you didn’t listen. You turned a blind eye to our struggles.

But that’s all so convenient isn’t it? Now you can spin your little “tiktok creators are evil and making people do X” headline that gets recycled with a different disorder or activity every month.

If a tiktok means someone gets the courage to go seek out help, that should be encouraged! Maybe, like you say, they don't have that condition after all. Maybe if they're truly “faking it”, it results in them looking for a deeper cause, a reasoning for their want to be ill.

What you don’t seem to understand, whether that be due to a lack of education or compassion, is that everyone deserves a right to be heard. Even if what they think they have is wrong. Everyone deserves a chance to an assessment, a chance to be believed and understood by the professionals whose entire job is to help.

You also seem to have suddenly decided that it’s bad to do brand deals? Demonising creators who do so, who often cant work? Because, what people who struggle to live day to day comfortably and often have low if not non-existent incomes independently need, is to be bashed for something plenty of able-bodied people do without complaint. It’s a double standard. It’s a bias. Its ableism at its finest.

Let’s go back to your main point, how you want to paint us all as people who are ‘competing’ over who’s sickest.

Do you know why that is? Because you hate to see disabled people that you can’t turn into inspiration porn. You hate seeing us actually be ill. You can’t stomach the harsh realities, you're afraid.

Because you know it can happen to you.

You’re scared so you want to make us palatable. We need to be quiet and docile and easy to watch. You want us to be inspirational. You can’t stand the sight of people being ill when you can’t turn them into a success story, when you cant monetise and market our illnesses as something we should just ‘ignore’.

You want us to break ourselves down into little bite size pieces, you want us to bend and destroy ourselves to make you comfortable. You want us to hide because god forbid you’re exposed to disabled people that you can’t twist into a sick fantasy of your saviour complex. The minute we can’t be melded into inspiration porn for you to make yourself feel better we become unneeded. We lose your respect. We lose your support because there is nothing you can take from us, nothing to exploit us for.

You need us to be easy to swallow, easy to consume.

You don’t like when the reality chokes you.

december 4th 2023

There can be beauty and love in being disabled, there is solidarity and warmth in it.

It doesn’t come in little a sterile pill box handed over by a pharmacy, it’s in the crumpled blister pack kept in the bag of a friend who knows you. It’s sharing painkillers carried specifically for your friends who may need it. It’s in the way we wordlessly pass tablets between us, a penniless trade, a pill for the knowledge you’re at ease.

I’ve never felt as much love and honest care as I do from the disabled people in my life. The people who may not be struggling with the same thing, but understand to a level that cannot be explained by anything other than our shared experiences. The knowledge of pain, whether that be mental or physical, connects us in ways that can’t be compared to any connection with an able bodied person.

Sick4sick friendships are some of the most beautiful I have. I know at least one of us will always have medication to share, I keep painkillers and nausea tablets in my bag not just for myself, but incase one of them needs it too. My partner will always, without fail, offer up his cane if I’m unable to bring mine out. It’s an act that always makes me want to cry, it’s such a personal item, and the thought that he cares so much to be willing to share that is something so deeply special.

Sick4sick friendships in the way we lean on each other, reaching out instinctively on stairs to steady ourselves down them. Clinging together through dizzy spells. A guiding hand on my back when I can’t see or walk too good. It’s wordless, it’s pure, it’s such a tender love.

I see it with my father, our shared joint supports, hand me down knee straps passed on like heirlooms, such simple items given with such love, even if it is unspoken. It’s driving half way down the street to pick me up when he heard me crying to my mother on the phone when I was flaring up, despite the fact he hates driving the car such short distances. He greeted me on the side of the road, opening the door and nodding, “mines been bad too lately” was all that he needed to say, he understood. For those brief moments as we drove home I felt we bonded more than we had in years. I hadn’t even asked him to come collect me, I didn’t expect him to, but he had, without any hesitation. He simply heard me cry over something and he understood.

I think about that a lot.

I think a lot about moments with strangers. Somehow falling into conversations with customers at work, sharing advice with people I will never meet again. Smiles and understanding nods and somehow genuine care.

The joy of seeing someone with a matching cane is unparalleled, the grin across the street when we notice. There is something so lovely and so special about having that brief moment, a few seconds where we are connected in a way not many people would understand.

i can’t provide alt text at this time but here’s a link to my thread on twitter

also ! no one truly wants to be disabled and what she doesn’t realise is outside of just some attention there is nothing truly gained and more often than not that attention will be negative and you’ll lose friends and family and support as a consequence of becoming sick.

it wont let me add a link but there’s a petition in @the_chronic_notebook ‘s instagram bio to have the article removed.