I got sick in the summer of 2023. It all started from there. One day I was fine and functional, then the next I had passed out several times and everything started going downhill fast.

At first, I was diagnosed with a form of Dysautonomia, Orthostatic Hypotension (O.H.). That explained some of what was happening, but not all of it. It still didn’t explain why my body felt like it was shutting down in ways I couldn’t recover from. I didn’t get my Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) diagnosis until December of 2025. I was lucky, most don’t get theirs for years upon years. Nonetheless, it was too late, my life already looked completely different.

Living with ME/CFS is not being “tired.” It is waking up and immediately calculating what kind of day your body is going to allow you to have. A good day for me looks like getting out of bed and actually doing something with it. Maybe I can shower and wash my hair. Maybe I can go to a store. Maybe I can sit in the living room with my family and actually be present enough to watch something. Maybe I can have a friend over. Maybe I can cook something basic and feel like I’m participating in my own life instead of just trying to survive it. But let me be truthful, even on those days, I cannot do but a couple of those activities. These are just my good days. Just days where I can function in pieces of a normal life.

A bad day is completely different.

On a bad day, I am stuck in bed. I’m asleep on and off all day. My room is dark with blackout curtains, just a small sliver of light coming through. The TV stays on something soft in the background, usually something like a nature live stream because anything too loud or too bright makes everything worse. I’m not really living that day. My body feels horrendous. My brain feels like it’s underwater. I get depressed because I’m trapped in it. On those days, I don’t talk much. I don’t have the energy. Even doing things I enjoy like crocheting or coloring becomes too much. So I end up doomscrolling endlessly on my phone, trying to distract myself from the fact I can’t get up.

And the part people don’t understand is how easy it is to tip from a “good” day into a crash. Sometimes I don’t even know what caused it. Other times it’s obvious in hindsight. Something that looks small from the outside becomes everything for my body. Washing bedding can be enough. Going to Sam’s Club curbside as just a passenger in the car can be enough. Making food in the microwave can be enough. It’s not really about how big the activity is, it’s more about what my body can tolerate that day, and sometimes I don’t know my limit until I’ve crossed it.

This is where post-exertional malaise (PEM) hits. My body becomes extremely out of breath. I feel like I’ve been hit by a truck. I need to lie down immediately. Not because I want to sleep, but because my body forces it. And then the next day, I’m often completely out of commission. This is a normal cycle for me.

Things I used to do without thinking about it - going out, walking through a store, working, going on dates, doing things just because I felt like it-those things don’t exist the same way anymore. I still go to school, but it’s online and built around what my body can handle. I used to be able to shower then go out afterward. I used to do makeup just for fun. I was good at it. I used to live in a body that didn’t require me to think through every single decision like it was a cost analysis.

Now, I have a wheelchair for when I go out. I need it. Even sitting up takes energy. That sounds so small, until you realize that your body is constantly working just to exist in gravity. Showering is another basic thing people tend to take for granted. Not an “everything shower,” just the basic shower. I sit when I shower and it still drains me. Sometimes I must choose between showering and resting. Most of the time, I have to choose rest, because if I don’t, I will pay for it for days. So we rely on bathing cloths, other hygienic products made for disabled individuals, and that is just how it is.

ME/CFS comes with so many symptoms that are difficult to even explain to people who haven’t lived it. The fatigue is extreme, it is a full-body shutdown feeling. It comes with severe body pain - muscles, joints, and sometimes bone-deep pain. I look exhausted quite often, as if my eyes are sinking into my skull. But one of the worst parts for me is the brain fog and cognitive issues. It isn’t just forgetfulness. It is being in the middle of a sentence and feeling your thoughts just disappear. It is trying to hold onto what you were saying and realizing there is nothing there anymore. It is wanting to cry because you know what you meant to say, but can’t access it. Sometimes, I even lose the ability to speak clearly in the moment. Sometimes I just ramble and mumble words trying to express my thoughts. It is beyond frustrating, feeling like you are losing your mind when more often than not, it is all you have left.

There are also sleep issues that never make sense. I’ve dealt with what feels like a 24-hour shifting sleep cycle my whole life. I sleep too much, sleep at the wrong times, and still wake up exhausted beyond comprehension. The sleep isn’t even restorative, it just pauses things for a bit.

On top of that: light sensitivity, temperature dysregulation, sinus and flu-like symptoms, digestive problems, and constant crashes tied to exertion that would be considered minor for most people. Everything stacks. Emotionally, this disease is heavy in a way that is hard to explain without people assuming it’s “just depression.” There is grief. There is anxiety and fear. There is dread. There are days where I feel completely isolated even when people are physically around me. There are moments where I genuinely struggle with suicidal thoughts, not because I don’t want to live, but because living like this feels like I am being cut off from everything.

What makes it harder is how often people try to fix it with things that don’t apply. Supplements. Advice. “Have you tried drinking more water?” “Just stay positive.” None of that is helpful, it just makes you feel even more unseen.

One of the hardest truths is this: a lot of people still don’t even believe ME/CFS is real in the way it actually exists. I have been told directly by medical professionals that it isn’t real. I have been dismissed repeatedly. I have been told it is psychological and need to be admitted to a psychiatric hospital. I’ve been sent in circles through doctors who don’t know what to do with me. There is no single test that confirms ME/CFS. So instead, patients are forced to prove their own suffering over and over again just to be taken seriously. Even now, there are very few providers who understand it. In many places, there are none at all. And for people with severe ME, the consequences of that disbelief are not abstract. They affect care, services, safety, and access to basic support.

This is not just a medical issue. It is a system issue.

In my own experience, accessing care has meant being dismissed, redirected, or ignored. I’ve had doctors suggest it was purely mental health despite me already being under psychiatric care with providers who actually understand the condition. I’ve had to fight just to be evaluated for Dysautonomia and ME/CFS in the first place. And even when you do get the diagnosis, support is limited, if even available.

Here in Texas, access to Medicaid for disabled adults is restricted in ways that leave many people without coverage unless they already have SSI. That creates gaps where people fall through the system entirely. I’ve been fortunate enough to have family insurance support, but even that is something that has to be re-evaluated constantly.

ME/CFS has also drastically changed my social life. I don’t really have one anymore in the way most people understand. I have a small number of people I see occasionally, and that’s it. Most relationships exist at a distance now and unfortunately, most have left. Even independence has changed shape. I can still do some things, but everything is structured around limitation and recovery time. I plan my life around what I can recover from, not just what I can do.

I miss a lot of things. Honestly, almost everything about how life used to feel normal. But I also know why I’m still here doing this. Because this disease is not just personal. It is systemic. It is underfunded, misunderstood, and completely disregarded more often than not. It is still being fought for at every level - medical, political, and social.

That’s where Millions Missing comes in. Millions Missing is an initiative from the ME Action Network. This initiative represents people who are no longer fully able to participate in life because of ME/CFS. People who are missing from work, school, relationships, healthcare systems, and visibility itself. This is part of a larger advocacy movement through MEAction and patient-led storytelling that refuses to let this illness stay invisible.

I want my story, their stories, our stories to be heard. See M.E. See me.

Please look into MEAction Network and help advocate for so many of us who may be unable to do it ourselves.