The Cost Of A Manufactured âCrisisâ
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 hereâs 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 âcompetitorsâ 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, youâre so used to being able to write things off as just âteenage girls being teenage girlsâ 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, weâre 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 youâre causing outside of the internet?
This has real world consequences.
We arenât âaddicted to being sadâ weâre just sick of fighting for basic treatment and respect, sick of fighting to be believed. Weâre SICK.
You talk about doctors being concerned about how people are going to convince themselves theyâre sick/sicker than they are and how diagnosisâs of ârareâ conditions are gonna rise? They shouldnât worry about that, because getting a diagnosis before this was hard enough.
Do you know whatâs 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.
Iâll play along, say maybe some people genuinely are âfakingâ but that doesnât 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 didnât 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. Itâs not a tiktok problem. Itâs 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 donât lose hope, that people donât give up. The community is a beacon of positivity, but not in the âa happy mindset will fix everythingâ way, but a way that shows youâre not the only one fighting. That youâre 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 thatâs a rare thing to experience, to be believed.
Sure, some people may compete over whoâs sicker, but a few bad apples is never going ruin the whole bunch. You canât generalise an entire community based on a few people you disagree with. Especially not when itâs a community of people that have been beaten down so much.
Weâre all there through a shared experience of being emotionally battered by people, whether that be family or friends or doctors. Weâre all there to just seek support.
Weâre all there because weâre tired of our conditions and experiences being written off as âanxietyâ or âjust pubertyâ 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 doesnât.
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.
Thatâs because the community is built on acceptance. Itâs built on understanding. Itâs built on love.
You act as if this online community is new, as if itâs this new fad thatâs 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 didnât see it, you didnât listen. You turned a blind eye to our struggles.
But thatâs all so convenient isnât it? Now you can spin your little âtiktok creators are evil and making people do Xâ 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 âfaking itâ, it results in them looking for a deeper cause, a reasoning for their want to be ill.
What you donât 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 itâs 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. Itâs a double standard. Itâs a bias. Its ableism at its finest.
Letâs go back to your main point, how you want to paint us all as people who are âcompetingâ over whoâs sickest.
Do you know why that is? Because you hate to see disabled people that you canât turn into inspiration porn. You hate seeing us actually be ill. You canât stomach the harsh realities, you're afraid.
Because you know it can happen to you.
Youâre 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 canât stand the sight of people being ill when you canât turn them into a success story, when you cant monetise and market our illnesses as something we should just âignoreâ.
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 youâre exposed to disabled people that you canât twist into a sick fantasy of your saviour complex. The minute we canât 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 donât like when the reality chokes you.
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