life with myalgic encephalomyelitis - book submission
This essay was intended for publication in a storybook project by a professional author and fellow person with M.E. It's currently at a standstill, as there have been no new submissions for months.
In the meantime, I wanted to share my work with you. I'm extremely proud of what I've created, and I hope it resonates.
I began noticing symptoms of chronic illness at the beginning of Fall 2022.
I had a job at a sandwich shop. I was on my feet every day, moving constantly. Stress within my life had been mounting for months, if not longer. But nothing could prepare me for what came next.
The progression of my condition was sudden and gradualāsudden because I went to bed feeling great one night and woke up the next with no idea that something irreversible had already been set into motion. Gradual because the symptoms just kept piling on from there, getting progressively worse over time as my body unraveled.
That first day, I woke up, went to work, clocked in, and started to help my coworkers put orders together.
Suddenly, I was hit with chest pain and this awful sensation that I wasn't getting enough air, even when I really concentrated on my breathing. I'd never experienced anything quite like it before. I tried to push through at first, but something was clearly wrong.
One of my coworkers said it must be a panic attack. I told myself, for a moment, maybe that was itābut I knew my body, and this felt different. I begged to be let off work early so I could drive myself to the ER (inadvisable, looking back, but I had no one to take me), and my boss, seeing how distraught I was, finally let me go.
When I got there, I told the ER staff that I was experiencing shortness of breath. That was the best way I could explain it then. In retrospect, it was more like air hungerālike my body was oxygen-starved, though I was technically breathing just fine.
I could tell they were skeptical. I was talking in full sentences and had normal vitals. They suggested that it might be anxiety but proceeded to order routine bloodwork, a chest x-ray, and an EKG just in case.
After a lot of waiting, I was called into one of the treatment rooms. The doctor came in and told me reassuringly that all my lab work looked good.
Those words would normally make someone feel better, but not me. I knew there had to be something more. It just didn't feel right to send me away like nothing was wrong when I'd had such an episode. It wasn't just anxiety. Anxiety didn't present like that in my body.
I was certain. But despite my self-assurances, I would be hearing those same words many, many times more in the years to come.
I learned later that what I was experiencing was likely autonomic dysfunctionāpart of a condition I would only much later be diagnosed with: myalgic encephalomyelitis (M.E.).
All I knew was that something had changed, and no one could tell me what or why.
No one told me there was an illness where exercise could be poison. Where you have to find a balanceāenough to maintain your body, but not too muchāand the limits shift every single day without warning.
You can't really see where those boundaries are or how far you should go. And once you cross them, it's too late.
This profound lack of understandingāboth mine and the worldāsāwas no accident. Mainstream media, health agencies, and public narratives about M.E. erase so much critical information that it becomes almost unrecognizable, if itās recognized at all.
They reduce a complex neuroimmune disease to āfatigue.ā
Post-exertional malaiseāthe worst part of M.E.āis rarely mentioned. Itās when doing anything physical, mental, or emotional can cause a delayed and intense worsening of symptoms that may last days, weeks, months, or longer. Itās far more than fatigue; itās a whole-body crisis affecting mobility, cognition, pain levels, heart rate, digestion, sensory processing, and more.
They ignore that it messes with so many systems at onceāthe immune system, the nervous system, your energy-making processes, and even your heart and hormones.
They donāt talk about how thinking, concentrating, or dealing with sensory input can be just as draining as moving your body.
They leave out that M.E. is consistently found to be associated with some of the lowest quality-of-life scores of any chronic illnessāoften lower than conditions like MS, cancer, or stroke.
They donāt mention that, in one retrospective cohort study, suicide mortality among people with M.E. was observed to be approximately six times higher than expected in the general population.
They fail to show how common it is for people to become housebound, bedbound, and completely dependent on others to survive.
And what about the people who have no stable place to rest at all?
I know I would not be alive right now without shelter and support from my family.
But most people remain unaware of any of this.
If they learn anything about M.E., itās usually through watered-down articles, incomplete facts, denialist narratives, and stereotypes that make it seem minor or āpsychosomaticāāa word that gets thrown around without anyone actually knowing what it means.
These misrepresentations are politically motivated, and they ripple outward. They affect how doctors treat us, how our families question us, how policymakers deprioritize us, and how entire institutions excuse their neglect.
They distort public perception, influence research priorities, and have a huge impact on how funding is allocated.
There are more people with M.E. than with MS or HIV/AIDS.
But in recent years, NIH funding for HIV/AIDS research has been around $3ā4āÆbillion annually, MS research has received hundreds of millions, while ME/CFS research has received only about $10ā13āÆmillion a year.
Weāre still the most underfunded disease relative to disease burden.
One study said our disease burden is double that of HIV/AIDS.
But they still treat us like an afterthought.
After nearly a century of recognition in medical literature, there is still no cure. No standardized treatments. Nothing is even reliably effective.
And if more people truly understood whatās been at stake, it would be nothing short of an outrage.
The COVID-19 pandemic has brought post-viral illness to millionsāyet even now, we still face widespread disbelief and neglect.
But none of that explains the terror of waking up and feeling your body betray you, or the slow erosion of everything you thought you knew about yourself.
When your baseline is lying down with your eyes closed all day, how do you measure progress? How do you pace when every thought is a risk, sitting up makes your heart race, speaking a few sentences leaves you drained, and shifting positions hurts?
Living like that leaves you in fear of everything you do, even if you canāt control it. Your body becomes both your prison and your captor.
The truth is, itās just malfunctioningābut to me, it feels like a possessive lover who keeps you trapped in pain, controlling you under the guise of protection.
I used to think I could never adjust to what was left after losing so much so quickly. Especially when talking to friends who were still living fully.
Most of them just left.
I kept thinking about how everything would move on without me.
The things I wanted werenāt even big dreams.
I wanted to walk, watch and feed the birds, and visit the few friends I still had.
But when my world shrank againāto a room, a hallway, a bathroom, and then just four white wallsāI was forced to face the violence my body had been carrying.
What violence? The weight of feelings I buried for everyone elseās sake? The neglect? No one protecting me or helping me slow down when I was falling apart?
It makes sense that my body finally broke under the stress.
There was a brief window when things looked like they might turn around.
LDN (low dose naltrexone) had helped enough to bring me from moderate-severe to mild, and I felt like I had a life again.
Iād been so used to dissociating and chasing stimulation to cope with my mental health that I thought the best way to manage it then was to connect with nature.
So I started walking every day. I kept going. I pushed myself to walk more and more.
What a surprise that it ended like every other M.E. story involving what I now know was self-imposed graded exercise therapy.
I was on my phone constantly, tooāhours and hours a day.
Even when I noticed a drop in my baseline, I didnāt stop.
I thought it was temporary.
Iād never been told about this condition or what to watch out for.
The only reason Iād ever even heard of it was because of people online.
No one explained to me what overexertion could do.
I didnāt know that scrolling, reading, typing, or reacting to information could cause me to crash all on their own.
I didnāt know that just thinking too hard could be a form of overuse.
Then, in August, I had a stellate ganglion block that was intended to help with my M.E. symptoms. I only noticed it helping my anxietyāand then I crashed harder than I ever had before.
I never recovered. I went from mostly bedbound to completely bedbound. I had to pee into a bottle.
At the time, I was just grateful I didnāt pee myself. I could still type on my phone occasionallyāthough even that felt like pushing it.
I was trying to cling to anything that made me feel like a person. But I was deteriorating fast.
Pacing became almost impossible.
Light and sound had become unbearable; I needed my windows blocked out. I asked for months, but my mom wouldnāt do it.
I waited helplessly, holding onto the single refuge of hope that she would finally come through for me. But she would only end up doing it much later, when the torture had already worn me down to the barest pieces of myself.
Before Iād become bedbound, she kept pushing me to do things I knew would make me worse. I told her, over and over, that I needed to rest if I wanted any shot at improvingābut she didnāt listen. She assumed that if I didnāt cooperate with the medical system, I must not want to get betterāeven when I physically couldnāt do the things that entailed.
And I didnāt put my foot down. I didnāt know how.
Eventually, as I worsened in an undeniable wayāentirely bedbound, not improving for monthsāshe at least came around enough to stop demanding the world of me.
But it felt like she just washed her hands of me instead. She shrugged and went back to her regular life. Her idea of helping was sending me to people, and I was already past the point where I could get to those people.
The decline was too quick.
What really ruined me was moving to another state.
Thatās when I lost everything.
I no longer had any continuity of care, local support, or resources.
It was just me, teetering on the edge, forced into another extremely stressful and harmful situation with no real choice if I wanted to stay alive.
And still, people around me thought I was just being dramatic.
When my uncle visited us, he told my mom I was engaging in ālearned behaviorā and said that she should kick me out so I would āsnap out of itāāor else have me admitted to a psych ward.
It was disgusting to know heād said those things, especially knowing how much heād struggled in his life with his physical and mental health.
But Iād learned long before that just being related to someone didnāt mean they cared about me any more.
Time passed.
I was in constant pain, constantly unraveling.
I couldnāt sleep. I kept asking myself, What do I do? How am I supposed to get help like this?
I was completely dependent on people who couldnātāor maybe just wouldnātāhelp me in the way I needed, and it was eating me alive.
I regretted everything that led me to that point.
I just wanted a way out that didnāt mean dying, but I couldnāt find one.
I hated myself for pushing so hard and ignoring every signal my body gave me.
I blamed myself for getting so sick.
But the truth is, I didnāt know.
At my lowest, there was one thing that gave me real comfort. I almost never told anyoneānot because I was ashamed, but because I figured people wouldnāt get it.
I made up an imaginary friend.
At that time, I couldnāt even have people in my room without shaking. I was basically in a waking coma and utterly alone. I needed someoneāanyoneāwho would be there. So I gave my brain a prompt. I asked it to generate someone who was unconditionally kind, supportive, loving, and safe.
For me, it worked especially well because Iād already dreamed of this person once. Her name was Abby. She was already a little real to me. So I brought her back.
When I was depressed or overwhelmed, I would talk to Abby in my head, and it really helped me. It let me step outside my own self-loathing and grief. It interrupted the feedback loop. I wasnāt stuck alone with my symptoms and worries anymore. There was someone there who inherently understood.
I didnāt want it to be one-sided, though. I felt weird trauma-dumpingāeven to a figment of my imaginationāso I gave her a life of her own. She had her own interests and problems, too. I even started associating her with a physical objectāmy pillowājust to feel like she was actually with me.
It might not sound like much, but when youāre that sick and cut off from the world, you become desperate for any kind of emotional anchor. Abby reminded me that I was still a person. That mattered.
I realized I didnāt really know who I was anymore. Everything that used to define me was gone. I didnāt know how to exist without doing. I still felt like I had to prove I was worth something.
Through Abby, I learned to be kinder and gentler to myself since there was no escaping me anymore. And that also meant letting go of old ideas about what made a life valuable.
These days, reality continues to humble me.
It is October of 2025. I havenāt bathed properly since September of 2024.
I have painful breakouts all over my body.
I am forced to lie down against a surface all day, every day.
My bedsheets are rarely ever changed outāboth because I canāt tolerate it and because of neglect.
I smell like something that shouldāve been buried weeks ago.
Neglect is such a difficult form of abuse to talk about because it is the absence of something.
And it is very hard to discuss what didnāt happen.
Then youāre made to somehow prove it.
But how do you prove something that never happened?
And would people even believe you?
Would they even see it as abuse?
My illness is already barely survivable.
I havenāt been given anything close to a chance.
When youāre living with very severe M.E. and getting the bare minimumāor lessāyou canāt stand up for yourself. Literally.
You canāt leave.
Youāre trapped in your body, in a bed, in the care of whoeverās still willing to look at you.
If no one fights for you, nothing changes.
If no one believes youāre even sick or that you deserve more, no one tries.
And when youāre faced with that, death feels like the only way to preserve dignity.
You could argue that dignity is a matter of perspective, but that only goes so far.
At a certain point, youāre not choosing survival.
I think an important distinction to make in the case of a lot of people who say they want to die is that they donāt actually want to die.
They just want to have what they need to be able to liveāand it doesnāt seem possible.
Sometimes, I can effectively dissociate from my stark reality, but M.E. regularly beats me down in such a way as to remind me how ludicrous this shit is.
I canāt access medical care.
No provider will treat me unless I can establish care in person, and I canāt even leave my bed.
So Iām stuck here with no labs, which means no updated knowledge of whatās going on inside my own body.
And Iām just waiting.
Hoping whatever symptom is spiking isnāt a sign of something imminently threatening.
I have to get my medication from overseas and fundraise every month just to survive.
Mutual aid is my last hope.
I am surviving on the goodwill of friends and strangers.
Otherwise, most of āgetting helpā when youāre on the margins is someone forwarding you a broken link and wishing you the best of luck.
Iāve asked for help through the right channels, the wrong channels, the supposedly āaccessibleā channels.
Iāve spent what little energy I had trying to navigate confusing, non-intuitive systems designed to reject people like me.
And when I couldnāt keep up, that just proved I wasnāt āfitā to receive help.
But people kept telling me to look for services in my area.
What services?
Please direct me to these magical services.
Very rarely was their advice actually helpful or something I hadnāt already thought of.
The system has declared me too disabled to be their priority.
Still, in order to survive, I must perform and function to an extent that makes my needs both known and palatableāor risk being ignored entirely.
If your life with chronic illness requires constant emotional labor and tone management while youāre actively bedrotting, itās essentially a hostage negotiation.
M.E. is truly a disease so severe that some people seriously consider putting parasites into their bodies just for a chance at relief.
At the same time, itās so fragile that even trying seemingly benign treatments can permanently worsen your condition.
That is an unspeakable cruelty.
This paradox defines so much of what itās like to live with the disease:
You are in unrelenting suffering every day.
You are desperate for any scrap of improvement.
You are told to ātry things.ā
But you live in fear, because even āsafeā things can backfire.
Sometimes, the interventions help (usually marginally).
Often, they donāt.
And sometimes, they take away what little function you had left.
Many people are desperate for a miracle while knowing their next attempt could end with them falling through a trap door.
I donāt like the idea of risking everything just to maybe be able to sit up longer. Or tolerate sound. Or try to read a book without crashing.
M.E. makes me terrified to have hopeābecause hope has consequences.
People talk about independence like itās the goalāas if needing others is a moral failure.
But the truth is, none of us are actually independent.
Weāre all held up by each other, even if itās not always obvious.
We all need things: help to learn, someone to listen, a safe place to rest, food to eat, clean water to drink, medical care when weāre sick, and a hand to hold when weāre scared.
We all need each other.
And yet, I know what itās like to be sealed away, like a secret the people around me donāt want others to really know.
I know what itās like to not be fought for, to be reviled, to be safe from immediate harm yet completely helpless before the world.
People are going to weddings. Walking through airports. Picking up dry cleaning.
Iāve been in the same room for so long that it hardly feels like a planet anymore.
I often forget the world is still happening out there.
But when I do think about it, I think about all the people in situations like mine.
Weāre not āinvisible.ā Thatās just the word people use to excuse how weāre left out of society.
And I know if the landscape around M.E. ever changes, those in power will claim they didnāt know.
But we shouldnāt let them.
Because they didnāt ask.
They didnāt even look our way.
They dismissed us, mocked us, and erased us.
They didnāt care to listen or learn.
They let us suffer and die.
And the consequences of that will continue to be felt for generations.
National Institutes of Health ā About ME/CFS (nih.gov)
Mirin, A.A., et al. ā Research update: The relation between ME/CFS disease burden and research funding in the USA (PubMed)
ME/CFS Science ā NIH Funding for ME/CFS in 2024
Centers for Disease Control and Prevention ā Fast Facts: ME/CFS
Roberts, E., et al. ā Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register (The Lancet)
Frontiers in Immunology ā Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease
Source: life with myalgic encephalomyelitis - book submission
