Please help raise awareness about a serious illness that hides in plain sight
My name is Ang. If you’ve been following my story then I’m sure you’ve heard about this, but I’ve come down with a chronic illness. I have severe-spectrum MECFS. Myalgic Encephalomyelitis, or cruelly called Chronic Fatigue Syndrome, which downplays how much of a devastating, horribly disabling and terrifying disease this is.
It is an illness that affects millions, leaving a good portion of us housebound or bedbound, some so sick they are paralyzed and need to be tubefed and others die from the illness or complications.
I’ve been bedbound almost 3 months now since my illness has been progressing (which is nothing compared to how quickly it can become years), so sick some days I cant lift a spoon to feed myself, talk, or tolerate light and sound. I can’t draw anymore which was my passion in life as an artist, let alone take care of myself. I can’t even tolerate watching TV or play games most days to distract myself from the trauma caused by being confined to a bed in this sort of agony.
I got ill like this after getting the flu in January, and it’s been downhill from there as I started having bizarre neurological symptoms and collapsing episodes where I was unable to move, the energy draining from my body as the days went on until I needed a cane to walk, then a walker, then I was housebound with a wheelchair, and now I am bedbound and the severity steadily worsens with no let up so far despite doing everything I can to stop or slow the progression.
It is a level of sickness that is overwhelming me and my life is uncertain, but it’s looking grim from this point. I’m in severe pain constantly, on top of having horrible dysfunction in every other part of my body. I’ve only been steadily declining.
I lost my entire life right as it felt like it was starting. I was an artist working my dream job at Cartoon Network, and now I may never be able to return to the animation industry or live out my dreams of telling the stories I wanted.
The worst part is this illness could have been treatable by now! But it’s not, due to a deliberate choice of abuse and neglect by medical institutions. Most doctors aren’t trained to treat or diagnose M.E. and it gets practically no funding. Most sufferers are told it’s all in our heads (wrongfully diagnosed with conversion disorder or functional neurological disorder) even with evidence coming out that it’s a physical neurological disease and the only treatment we are given is get told to take anti-depressants, see a therapist, and exercise (despite exertion intolerance being the hallmark symptom and dangerous).
So the only way people like me have any hope of getting better is if we get a surge in awareness and understanding, and hope it leads to more funding and research. With decades of neglect and lives lost, this can’t go on.
At first I asked for donations when I was trying to figure out what was happening to my body as I threw money at doctors appointments begging for help only to get turned away and given no help, dwindling away my savings from when I used to work. And while donations were loved and helped significantly in my financial situation, it will not give me access to effective treatments if they don’t exist.
That is why I am asking you to help spread awareness. Please educate yourselves and donate if you can to organizations that research M.E.
People like me are suffering with a monster illness as debilitating as late-stage AIDS or cancer, hopelessly sick and dying with little help and living in severe medical neglect. I can’t even get a caregiver which I need now because my family can’t care for me longterm, all because my illness isn’t taken seriously by health insurance companies!
We need help. People with M.E. need help so bad because a lot of us are even too sick to advocate for ourselves.
If you want to know more there’s a wonderful documentary on Netflix made by M.E. sufferer, Jennifer Brea called Unrest (2017). Please give it a watch.
Please share this. I am one of the #millionsmissing and while I have not been suffering with M.E. for very long compared to others, the trauma and destruction this illness brings is great and no one should have to go through this. I would not wish this suffering upon even my enemies.
We need awareness. We need advocacy. We need understanding. We need funding. We need diagnostic markers. We need research. We need effective treatments and hopefully one day a cure.
I may never have my old life back, and I don’t want anyone else to keep suffering the way I have since I’ve gotten sick. The pain is indescribable. I want one day for someone to get sick like I and others have, only to learn they can be diagnosed and effectively treated or cured.
Please help bring our stories to light. Please help save our lives.
Sometimes it is your fault.. Sometimes you don’t listen well enough, you’re selfish, you’re rude and you aren’t always right. Sometimes you fucked it up and tbh that’s okay. It happens, learn from it, apologize and keep it moving. Just because you fucked up doesn’t mean you’re a bad person. Don’t dwell on it
When I was little I used to think if you walked outside too much at night in animal crossing the man on the wanted poster in the police station would come and kill you so I stayed indoors or ran as fast as I could outside
“Kissing Doesn’t Kill“ (Black and white postcard) from 1980’s ACT UP campaign for HIV/AIDS awareness.
This is the banner that was put up on buses to create awareness! a lot of companies cropped out the bottom so I thought it would be cool to share the full version
Am I the only one who thinks that hitting a kid and abuse are different things? Like, if I ever had a kid, I wouldn’t spank their ass raw or something like that. But a bop on the mouth or the ear pull or a smack upside the head? Yea. Those are behavior modifiers.
Except they’re not.
The studies done by the trained psychologists in this joke show that little kids don’t associate being hit with the thing they’ve done wrong. Very small children only understand consequences that are directly caused by the thing they did. Steal a biscuit, biscuit tastes good. Then for no reason mummy hit me. Very different to stole a biscuit, now no biscuit after dinner because I stole a biscuit.
And they also show that when a child is old enough to understand why they are being hit that non-physical punishment is equally as effective and less mentally harmful in the long run.
Do you know who benefits the most from hitting as a punishment? The parent. It gives a satisfaction rush. Parents do it because it makes them feel good.
Basically kids have two stages: too young to understand why they are being hit so physical punishment is useless for anything other than teaching a child that bigger stronger people can hit you whenever they like (Which sounds like the same lesson you would learn from abuse)
And the second stage is old enough to be reasoned with so many punishment options are available and you chose physical violence because it makes *you* feel better, which is an abusive action.
The only time a person should ever use violence against another human being, of any age, is to stop that person from being violent themselves.
Hitting a stranger is a crime. Hitting someone small who relies on you for food, love, and shelter should be as well. Don’t hit your fucking kid.
there should be a tax that youtubers pay where 1.5% of all of their revenue goes back to Kevin Macleod for basically supplying YouTube with it’s own soundtrack.
who is this man and what music did he make???
if you hear a royalty free song on youtube, there’s approximately an 80% chance Kevin Macleod wrote it.
here’s some you’ve almost definitely heard:
for those wondering, yes, he also made THE generic royalty free song that was EVERYWHERE in 2014.
