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.
https://m.youtube.com/watch?v=JvK5s9BNLzA
You can also see her speaking here on TEDtalk.
https://m.youtube.com/watch?v=Fb3yp4uJhq0
Here are organizations you can donate to:
https://solvecfs.org/donate/
https://www.meaction.net/donate/
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.
