A soft hum coming from my window fan pushes in the only fresh air I breathe all day. The light from the half open window pooled onto the floor trying to push back the overwhelming darkness of my room. The blue walls looked black; the honey-colored hardwoods now stained a
deep maroon. My once vibrant space glowing with relics of my various hobbies throughout the years now lay dormant, shrouded in shadow. I wish I could say the darkness helped me think or give some clever explanation for why I lived in the shadows. The answer is sadly quite simple: I can’t find the strength to stand up and turn the light on. Millions with chronic fatigue syndrome also struggle to turn the lights on, all of us laying around somewhere in our homes, trapped looking out the window instead of being outside the window. Living with CFS has become an existence of solitude and darkness where homes are turned into prisons. This disease, characterized by overwhelming fatigue, takes us away from life. Our connections to the outside world disappear, and our lives come calling for us, but we cannot reply. As such, I want to dream of a world where the public understands and are more aware of CFS, where doctors/medical professionals are trained on this disease, and most importantly where more research funding can end our struggle definitively. We don’t just want to look out the window at the world changing around us. We need the world to look back in and offer their help.
I was very much alone when I was first diagnosed, so my mother introduced me to others in the CFS community by finding groups online. These groups consisted of anyone who had CFS and needed help, or someone to talk to. It was a remarkable sight when I first saw those in my new community. I found their ability to help one another while facing down the same odds themselves astonishing. Every question was answered, every post had positive replies. In a bleak world of fatigue, pain, and loneliness, my community found ways to comfort, celebrate or help one another. They were caretakers, both for themselves and for those in our community. While there always was a sense of desperation, I loved their unwavering determination and optimism for a better future for themselves and those around them.
I didn’t choose to be part of this community; I didn’t even want to be part of this community. No one in this community does. It’s not like anyone wants to have their life taken while they still live, but fate has a dark sense of humor. But here I am, we are, the butt of a cruel
joke. And yet, something wonderful about this community is their incredible sense of laughing back. So, although we all are trapped in our own bodies, this darkness is a sort of treasure we all hold dear. We have bonded over the vastness of the internet through our mutual pain. We created a community online across countless forums where we can converse and share our experiences trying to get better.
Chronic fatigue syndrome is defined by debilitating fatigue. Doctors usually get this far in listening before the test results come back negative, and they send you home. I travelled around the northeast part of the country visiting specialists and other doctors, but it wasn’t for six years after my first symptoms that I found one doctor who researched CFS and got me help. I have read horror stories from all around the globe of people’s experiences begging for any doctor to listen. They accuse you of lying as a means of skipping work or school. They tell you “Go home and sleep.” CFS patients are constantly overlooked by doctors who feel that fatigue is a minor inconvenience to life. I have heard these words several times. I heard these words at 12, when I was diagnosed. Others heard these words for 20+ years. Our lives are being ruined by doctors who don’t know or don’t care how to treat this disease. This is an inherent failure of the medical system to teach doctors about this issue, and we are the ones suffering for it. Our community fights to try and be heard, but when doctors deny basic care because of their lack of understanding, we suffer in silence.
Doctors need to understand our point of view; to know what it is like to live in a world where the only change in scenery is the sun rising and setting. Where symptoms don’t just exist as minor inconveniences, but life stoppers. I know of many in my community who have had to
leave college or quit their job. If we, the community of patients, cannot convince them of this problem then I dream that one day government agencies will mandate training on CFS. Before research has the time to complete, doctors need to be knowledgeable in CFS so they can systematically treat symptoms as they arise and offer potential temporary solutions.
My community is amazing at helping each other. Those in the community always take the time to offer help, whether it is advice from a doctor that worked, changes in diet, or really anything that helped them. CFS always finds a way to undo any progress we try to make,
however, as symptoms are different for everyone, meaning everyone has different fixes and not one works for everyone. Compounding this is the confusing nature of how we contract this disease. Everyone claims it started after something happened, whether it was a virus, or in my case potentially a flu shot. CFS, then, is largely misunderstood, even by those with the disease, and my community is guessing their way through treatments. We can’t be expected to treat ourselves in a world as technologically and medically advanced as ours, can we?
This twisted and confusing knot of CFS’ biological origins leaves so many within this community to suffer in silence and without concrete treatments to ease their pain. I would love to see the government, or any third party actively support research about the causes behind CFS. A fundraiser for CFS even. Any proof that our disease can be treated would bring a world of hope to us all. For decades many of us have accepted our fate, trapped in our own bodies. Doctors could use their new training on CFS like I mentioned above to implement unique treatment plans for every CFS patient. We could finally stop trying to self-medicate and save our money for medicines that do work.
That darkness we live in, the kind that swallows you up and makes you forget how and when it became so dark. The community of CFS found a way to shine a light, albeit a small one. Our screens shone into all our collective darkness and united us so we wouldn’t forget we
weren’t alone. And yet, our conversations do not carry far beyond the walls of our forums. Few outside the medical community (and quite honestly few within the medical community) have heard of CFS, and fewer understand it. Which begs the question, have you, the reader, ever heard of CFS? For many of us, we struggled daily with employers and school administrators who had not and thus denied us many of the basic things we needed to do our work. I have come upagainst teachers who argued to keep me out of certain programs and classes due to my inability to come to school. I remember in the beginning of my time with CFS, I spoke to some who lost their jobs because of similar indifference and ignorance. The other sad reality of this lack of public knowledge is the loss of contact with family or friends. It isn’t that we don’t want to spend time with them, but more so that we cannot. Our dark harnesses hold us in our beds and shroud us, hiding us away from the world.
Cult classic movies are often “cult classics” because of the incredibly small fandom surrounding it. However, a surprising amount of these films are now being re-visited by an entirely new and younger generation after seeing clips of said movies online. CFS groups are much like these “cult followings” in the sense that we are niche and quite hidden away from the public. Our community is full of stories that could be shared as a means of raising awareness. I dream of a future where CFS is frequently discussed and advocated for, and where the incredible social skills of my community are used to bring more people into our community as those willing to help. Taking advantage of the large reach of social media could finally let others into our conversations. It could finally light up our dark room. I want to live in a world that listens when we talk. I want to see a world where when someone asks for help, they say Ok! An understanding planet is a listening one, and so that is why we can’t just be a cult classic film group anymore. We need to be a phenomenon that resonates worldwide.
“What do I want for this community?” Honestly, help. Help from doctors. Help from employers, schools, and other businesses. Help from the government. Help from anyone. These people have worked so hard helping each other not sink while receiving no help of their own. I
most certainly would not be writing this today without a lot of the advice I received from this community. Help must come from public awareness, education for doctors, and more research for this disease. We cannot suffer in silence watching the world from behind our windows. It isn’t just unfair; it is like losing your life while you’re still alive.
I want us to live again.
To walk out the door, not stare out a window.
Jacob Andre grew up in Peru, NY and is currently a student at Arizona State University.
Jacob won 1st place in the Young Adult category (Ages 19 – 25) in the Adirondack Center for Writing’s My Dreams for my Community Contest. This essay contest was a collaboration between ACW and Adirondack Voters for Change. Thanks to the Adirondack Center for Writing for sharing this essay.