18 Years Without a Name: My ME/CFS Story

Reading Time: 19 minutes

This is my ME/CFS diagnosis story. It took 18 years, countless doctors, and a trail of misdiagnoses before my symptoms finally had a name.

Fall of 2007. I was back at Scripps College after a summer of pulling espresso shots just to survive — and drinking most of them myself. I’d transferred Starbucks stores so I could keep working while studying, and the free coffee was less a perk and more a lifeline. I can still smell the arabica beans, that warm roasted sweetness hanging in the air of every shift, clinging to my clothes when I got back to my dorm.

After the first week back, I started collapsing. Not dramatically, not in front of anyone — I had a singles room, so nobody saw. I’d get back from class or a shift and just… come undone. My body would give out the second I reached my bed. Every muscle wrecked, every joint swollen-feeling, my throat raw, my lymph nodes so tender I could feel them throbbing. I couldn’t explain what was happening. I didn’t have the words.

Week by week, it got worse. Sinus infections roared through me one after another. Then came the hypersomnia — falling asleep in class, at the library, missing work shifts entirely. I was drinking six to eight cups of coffee a day and still couldn’t stay awake. I’d set multiple alarms and sleep through all of them. My body had stopped listening to me, and I had no idea why.

I kept dragging myself to the student health center. One illness after another, each time hoping someone would connect the dots. They drew labs to try to explain the fatigue. The results showed I’d had Epstein-Barr virus at some point — but based on the antibody levels, they said it had been “a very long time ago.” Nothing to worry about. Move on.
Years later, when a doctor tested me for EBV reactivation and it came back positive, I thought about that student health center lab result. The breadcrumb was sitting right there. They walked past it.

But in 2007, I didn’t know that. I just knew my body was shutting down and nobody could tell me why. The closest I got to an answer was the appointment where I broke down crying — not because I was sad, but because I was so frustrated with a body that wouldn’t function, with doctors who kept shrugging. The response? They recommended I see a counselor.

Not more testing. Not a specialist referral. A counselor. Because apparently, a young woman in tears about her own failing body was a mental health problem.

So I went. I sat in a coral pink cushioned chair and watched the counselor pull out the DSM manual. She had a post-it tab already marking the depression section. Already bookmarked before I’d even opened my mouth. She read through the criteria and told me my symptoms fit. Depression. That was the answer.

I wasn’t depressed. I was sick. But I didn’t have the language to fight back, and she had a manual that said otherwise.

I wouldn’t have a name for what was happening to me for another thirteen years.

The Body Knew Before Anyone Else Did

But if I’m honest, my body had been trying to tell me something long before Scripps. Long before Starbucks and the student health center and the coral pink chair. It started in high school.

The previous year, volleyball hadn’t been an issue. I was heading into my third year on the team and I’d been one of the faster players. But during pre-season practice, right before school started, something shifted. On Monday, I was keeping pace with everyone else. By Tuesday, I was straggling behind. We were running suicides and I was breathless — not the normal pushed-hard-at-practice breathless, but something heavier. Palpitations. Chest pain. An excruciating headache after practice that wouldn’t quit.

My body hadn’t recovered overnight. And it wouldn’t.

I kept pushing through because that’s what you do, right? You show up. But the math stopped working. I’d come home after practice and crash into a nap that stretched for hours. Then I’d have to stay up late to get through schoolwork. The sleep deficit piled on top of whatever was already wrong, and eventually I couldn’t hold both. I dropped my honors Geometry class. A month into the school season, I quit the team.

When people asked why, I told them I couldn’t keep up with schoolwork. That was true. It just wasn’t the whole truth. The whole truth was that my body had quit on me and I didn’t know why. I’d push and nothing would come back. Like the connection between effort and recovery had just… stopped working.

After volleyball, the fatigue got milder but never left. It just became the background hum of my life. Weekdays I survived. Weekends I slept in and recovered, banking enough energy to get through Monday again. That was the rhythm. I didn’t think of it as pacing — I wouldn’t learn that word for years — but that’s exactly what it was. A teenager, instinctively rationing her energy just to function at a baseline.

The lightheadedness started around then too. At school, at home, it didn’t matter where — every time I stood up too fast, the room would tilt. It wasn’t dramatic enough to make me faint. It was just… there. A constant low-grade thing I learned to work around, the way you learn to work around a creaky stair or a door that sticks. You stop noticing. You adjust. Joints that ached for no reason. Muscles that were sore without exercise. It all just became part of being me.

When I mentioned any of it to my mom, she called me a hypochondriac.

So I stopped mentioning it. I masked well. I’d say I was tired every now and then, but mostly I kept to myself and got very good at pretending everything was fine. A skill I’d sharpen for the next decade.

My pediatrician, Dr. Sragowicz, chalked the joint and muscle pain up to “growing pains.” I believed him. He was the medical professional and what did I know? I was a teenager. When a doctor tells you it’s nothing, you trust them. You figure the aching and the exhaustion and the lightheadedness are just what your body does, and everybody else is probably dealing with the same thing and handling it better.

Except it wasn’t nothing. But I didn’t know that yet. And the one person I might have told — my mom — had already made it clear that talking about it wasn’t welcome. So I absorbed it. Quietly. The way so many of us do.

“You’re Too Young For This”

Here’s what happens when you’re young and sick and no one can figure out why: they stop looking. Not all at once. It’s gradual. A general attitude that settles over your medical care like fog. You’re too young for this. These symptoms don’t make sense for someone your age. Have you tried sleeping more? Are you stressed?

It wasn’t one doctor who said it. It was the energy in every waiting room, every intake form, every furrowed brow that relaxed the moment my labs came back unremarkable. The message was consistent even when the words changed: whatever this is, it’s probably not that serious.

Being a young woman of color made the fog thicker. I can’t point to a single moment where someone said the quiet part out loud — it was cumulative, something I recognized looking back more than I could name in the moment. The pattern of being doubted a little faster, dismissed a little easier, taken a little less seriously. It adds up. It always adds up.

During winter break after my sophomore fall semester at Scripps, I saw a psychiatrist at the University of Miami. The diagnosis came quickly: depression. And I believed it. Why wouldn’t I? The counselor at Scripps had already pointed me in that direction with her bookmarked DSM. Now a psychiatrist was confirming it. Two professionals, same answer. I was depressed. Case closed.

So I did everything you’re supposed to do for depression. I went on antidepressants. I prioritized being social, pushed myself into community, showed up to things even when my body was screaming at me to stay in bed — because I thought the socializing itself was medicine. I thought if I just tried hard enough to be present, to be connected, the fog would lift and I’d feel like myself again.

The antidepressants didn’t touch the fatigue. The socializing left me more depleted. But nobody questioned the diagnosis. Not for years.

I stayed on antidepressants from 2008 to 2016. Eight years. Eight years of medicating something that wasn’t there, while the thing that was there — the thing eating away at my energy, my joints, my immune system — went unnamed and untreated.

It wasn’t until 2013, when I was living in Seattle, that someone finally thought to look in a different direction. A psychiatrist — not a GP, not a specialist, but a psychiatrist — told me I wasn’t depressed. He said I was his most optimistic patient. Think about that for a second. The person who finally saw through the wrong diagnosis wasn’t running labs or imaging. He was just paying attention to who I actually was. And who I was didn’t match the label on my chart.

He referred me to a sleep specialist. Five years after the depression label was stamped on my chart, someone paused long enough to wonder if maybe there was something else going on.

That referral would eventually lead somewhere. But in the meantime, I had spent years forcing myself through fatigue to prove I wasn’t depressed, taking medication for a condition I didn’t have, and quietly wondering why I wasn’t getting better when I was doing everything right.

The answer, of course, was that I was solving for the wrong equation. But when every doctor hands you the same wrong answer, you stop trusting your own math.

College, Surgeries, and the Wrong Answers

I went to Scripps College on a full scholarship. It was supposed to be the beginning of everything — the version of my life where I got far enough away from my circumstances to become the person I wanted to be. Instead, my body had other plans.

What I didn’t know then was that I had undiagnosed mast cell activation syndrome. I also didn’t know I was severely allergic to olive tree pollen. Scripps campus was covered in olive trees. I was essentially allergic to my own school and had no idea. I just knew I was constantly sick — sinus infections, one after another, my immune system seemingly in freefall — and nobody could explain why.

Between the infections, the crushing fatigue, and a body that kept finding new ways to fail, I couldn’t hold it together academically. I took a year off between my sophomore and junior years. Went home to Miami, moved back in with my parents, worked full-time as an administrative assistant. I still believed the depression diagnosis at that point, so I told people I was just taking time off. I didn’t have better language for it. I didn’t have any language for it.

Then I took another break — a year and a half — after the first semester of my senior year. This time I was in Seattle. I trained to run a half marathon. I was focusing on my health, or so I told people, and I meant it. I was still operating under the assumption that if I just pushed hard enough, did the right things, exercised, ate well, stayed positive, my body would cooperate.

It didn’t.

The surgeries stacked up during this period. Tonsillectomy and adenoidectomy in December 2010. Endometriosis surgery in 2011. A second sinus surgery in spring 2012. Each one was supposed to fix something. Each one did, in a narrow sense — and none of them touched the fatigue.

Between 2009 and 2012, the diagnoses came fast. PCOS while I was home in Miami. Then Endometriosis. Celiac disease. Depression, again. Each one handed to me by a different doctor, none of them talking to each other. It felt less like solving a puzzle and more like throwing things at a wall to see what would stick.

The celiac diagnosis landed in August 2012, right before I went back to Scripps for what felt like my last shot. I went gluten-free immediately, hoping this would finally be the answer that explained the unrelenting exhaustion. It wasn’t. The fatigue didn’t budge. I was exhausted at a cellular level, and removing gluten from my diet didn’t reach whatever was wrong at that depth.

I went back to Scripps in fall 2012 carrying a growing list of diagnoses and not a single one that explained the thing that mattered most: why my body wouldn’t let me live my life. I was devastated. It felt like I was never going to graduate. Never going to be healthy. Health had stopped being something I had and had become something I was chasing. Always just out of reach, always one more doctor’s appointment or one more surgery or one more dietary change away.

I finished my last semester that fall and graduated in the spring of 2013. Despite everything — the breaks, the surgeries, the wrong diagnoses, the fatigue that never let up — I finished. But I graduated without answers. The diploma was real. The mystery in my body was just as real, and it was coming with me.

Years later, in 2018, when I was finally diagnosed with MCAS, I thought about those olive trees. The campus I was allergic to. The sinus infections that never stopped. The breadcrumb was growing on every tree I walked past. Nobody — including me — knew to look up.

When Lyme Disease Entered the Picture

The answer, when it finally started to take shape, didn’t come from a doctor’s office. It came from a conversation.

I had moved to San Jose in April 2015, starting over again in a new city. That summer, I met one of Jose’s coworker’s wife, and she started telling me about her health struggles. The symptoms she described were eerily similar to mine. The fatigue, the infections, the years of being dismissed. It was like hearing my own story told back to me by a stranger.

She suggested I see her doctor in DC. So in September, she and I flew across the country for an appointment. This doctor did something no one had done before: he sat with me for several hours and reviewed my entire medical history. Not the highlights. Not the chief complaint. The whole thing — every misdiagnosis, every surgery, every symptom that had been waved away. By the end of it, he suspected Lyme disease.

I flew home and had a round of testing, including the iSpot Lyme test. The results came back negative. It was a gut punch. I had finally found a doctor who looked at the full picture, who named what he thought he was seeing, and the test said no. But I felt in my bones that the test had to be wrong. The iSpot Lyme only reliably detects early cases — and whatever was happening in my body was not early. It had been happening for years.

The following year, I saw a Lyme-literate doctor in Mountain View. She ordered more comprehensive testing through IGeneX, which looks for Lyme disease and co-infections with greater sensitivity than standard panels. The results came back positive. Late-stage Lyme disease.

I was sitting in her office when she told me, feeling worn down as always. And what I felt was both things at once: relief that someone had finally found it, and indignation that it had taken this long. Relief and rage, tangled up together so tightly I couldn’t separate them.

She also tested for co-infections. Babesiosis. Tick-borne Relapsing Fever. Bartonellosis. EBV reactivation. Positive, positive, positive, positive. Each one another layer, another thing that had been silently wrecking my body while doctor after doctor looked at individual symptoms and shrugged.

When the EBV reactivation result came in, I thought about those labs from the Scripps student health center in 2007. The ones that showed I’d had Epstein-Barr “a very long time ago.” The breadcrumb they’d walked past. It had been reactivating all along.

And then I thought about something even further back — a rash I’d had in 8th grade. A rash my doctor had dismissed as a spider bite. Looking back now, it was likely the original Lyme infection. The starting point of everything. Which means my body had been carrying this for even longer than I’d realized.

[Editor’s note: Link to Lyme rash misdiagnosis post when it goes live — end of April]

All those tests were out of pocket. The consultations were out of pocket. The doctors provided superbills to submit to insurance, but they were out of network, and the coverage was minimal. So on top of being sick, on top of being dismissed for over a decade, I was paying thousands of dollars for the privilege of finally being believed.

I had a name now — late-stage Lyme disease with co-infections. It explained a lot. But it didn’t explain everything. The crushing, unrelenting fatigue. The way my body responded to exertion like it had been poisoned. The cognitive fog that had shadowed me since college. Lyme accounted for some of it. But something else was still there, still unnamed, still waiting.

The Diagnoses Kept Coming

After the Lyme diagnosis, you’d think the puzzle would start to settle. Instead, the pieces kept multiplying.

In late 2016, an electrophysiologist at Stanford identified what had been happening every time I stood up too fast, every time my heart hammered for no apparent reason, every time the room tilted: POTS. Postural Orthostatic Tachycardia Syndrome. Dysautonomia. A name for the tachycardia, the fainting episodes, the vertigo that had been with me for over a decade.

Over a decade. Since high school. Since volleyball. Since the lightheadedness I’d learned to work around like a creaky stair.

In 2011, I had told my primary care doctor that my Garmin watch would beep incessantly when I ran because my heart rate was nearing its max. She didn’t investigate. Nobody caught it. Not then, not for another five years. I had been wearing the evidence on my wrist and it still wasn’t enough.

The POTS diagnosis didn’t feel like relief. It felt like more weight. Another condition, another specialist, another thing my body had been doing wrong that the medical system had missed. By this point, each new diagnosis carried a strange kind of math — part explanation, part accusation. Every answer was also a measure of how long I’d gone without one.

In 2018, I was diagnosed with Mast Cell Activation Syndrome — MCAS. And suddenly, years of unexplained reactions snapped into focus. The hives I’d gotten in high school with no explanation. The way my throat would close up walking past the perfume section at a department store, or stepping into an Abercrombie at the mall. Allergic reactions that seemed to come out of nowhere, to things that shouldn’t have been a problem.

That’s when I thought about the olive trees at Scripps. The campus I’d been allergic to for years without knowing it. The sinus infections that never stopped. Another breadcrumb, another decade-old clue that nobody — including me — had known how to read.

In 2019, I fainted at home and hit my head. A concussion. My POTS kept flaring afterward, bringing awful headaches that wouldn’t quit. My primary sent me to the ER twice — once for a CT scan, once to get my tachycardia under control with two liters of IV saline. My body had found yet another way to fail me.

By this point, the list read like a medical textbook’s worth of conditions: late-stage Lyme disease, co-infections, narcolepsy, POTS, MCAS, and now a concussion with ongoing complications. Each diagnosis had its own specialists, its own treatment protocols, its own language. I was managing a small medical bureaucracy just to keep up with my own body.

Was there grief in it? Yes. But I was past the point of dark humor, past the point of processing each new diagnosis as its own event. Instead, I did what I’d been doing since high school: I kept going. I stayed positive. Relentlessly, almost aggressively positive. Looking back, I can see it was bordering on toxic positivity — the kind where you smile through the accumulation because the alternative is letting yourself feel the full weight of it, and you’re not sure you can carry that and still function.

But underneath all of it — underneath the positivity, underneath the growing list, underneath the specialist appointments and the ER visits — there was still something unaccounted for. The fatigue that none of these diagnoses fully explained. The way exertion didn’t just tire me but wrecked me. The thing that had been there since the beginning, before Lyme, before POTS, before MCAS, quiet and constant and still without a name. The ME/CFS diagnosis was still years away.

2020: The ME/CFS Diagnosis Story Finally Had an Ending

The referral that changed everything almost didn’t happen.

My autonomic neurologist had suggested I try an exercise program to help manage the POTS. I pushed back. I told him that even mild exercise wrecked me for days — not normal soreness, not being out of shape, but a full-body shutdown that left me unable to function. He listened. And instead of insisting, he made a referral to the ME/CFS clinic at Stanford.

That referral was the first time anyone in my medical history had connected the dots between the fatigue I’d been describing for nearly two decades and the three letters that would finally explain it. The ME/CFS diagnosis I’d unknowingly needed since high school was finally within reach. But I had to fight for it. I had to know my own body well enough to say no, this isn’t deconditioning, this is something else — and I had to say it to a specialist who could have easily overruled me.

My appointment was scheduled for March 2020. Then I got sick. Low-grade fever, shortness of breath — a presumed COVID infection, though testing was nearly impossible to get at the time. The appointment was canceled. Rescheduled to August 30, 2020.

Five more months of waiting. Five more months of living the cycle I’d been living since high school.

The appointment was telehealth. I sat in my home office — no waiting room, no exam table, no coral pink chair this time. Just me, my laptop, and a doctor on a screen.

I told them about my life. How I could work full-time, but only at the expense of everything else. How I’d skip breakfast and lunch just to get through the workday. How some days I struggled to get out of bed at all. How I’d go days without showering when I was running late because I didn’t have the energy for both hygiene and a commute. How I’d stopped socializing almost entirely — not because I didn’t want to see people, but because I had to choose between being a functioning employee and being a human being with a life outside of work. I couldn’t do both.

And then I’d spend all weekend recovering. Sleeping, resting, doing nothing — just trying to refill a tank that was never full, banking enough energy to survive Monday. Then I’d do it all again.

I told them I’d been living this way since high school.

They had a name for it. Post-exertional malaise. PEM. The hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome — ME/CFS.

Eighteen years. That’s how long I’d been living with this cycle before anyone called it what it was. Every ME/CFS diagnosis story I’d later read online echoed pieces of mine — the dismissals, the wrong labels, the years lost. But in that moment, I only knew my own.

When I heard the diagnosis, the timeline reframed itself all at once. The volleyball collapse in high school — not deconditioning, PEM. The weekends spent sleeping just to function on Monday — not laziness, not depression, PEM. The reason I couldn’t run two days in a row when I was training for a half marathon in Seattle — not poor fitness, PEM. The fatigue that no other diagnosis had ever fully explained — not Lyme, not POTS, not MCAS, not narcolepsy. Those were all real. But underneath all of them, running like a current through every year of my life since I was a teenager, was ME/CFS.

It was clarifying. And it was devastating. Both at the same time, the way so many of these moments had been.

I sat in my home office after the call ended and felt numb. Not the dramatic, cinematic kind of numb. Just quiet. Still. Like my body was processing the weight of the ME/CFS diagnosis while my mind hadn’t caught up to yet. But underneath the numbness, there was a thin thread of hope. I finally had the right name. Maybe now I’d be on the right track to feeling better.

That hope shifted quickly. ME/CFS has no FDA-approved treatments. No cure. The medical options were off-label medications, most of which didn’t help much. The condition I’d waited 18 years to name was one that the medical system still barely acknowledged and had almost nothing to offer for.

I finally knew what was wrong with me. And the answer was something nobody knew how to fix. After 18 years of wrong answers and no answers and almost-answers, I’d arrived at the right one — only to find that the medical system had almost nothing waiting for me there. Just a name, and the grief of everything that name explained too late.

Here’s what 18 years of searching for a name looked like.

And Then the Pandemic Hit

The virus that would make everything worse was already inside me before I had a name for what it was making worse.

In early March 2020 — five months before my ME/CFS diagnosis — my partner Jose and I both got sick. We both had telehealth appointments with Stanford. His primary care provider suggested he might have sinusitis and prescribed antibiotics. He didn’t have sinusitis. He had shortness of breath and couldn’t function. My provider triaged me and referred me to Stanford Express Care for an in-person visit. They listened to my lungs, had me use a nebulizer, prescribed two separate inhalers, and then explained they couldn’t test either of us for COVID because we hadn’t traveled to China in the past 14 days.

We both had COVID. The gatekeeping on testing had nothing to do with the community spread that was already happening. But it meant we went home without a confirmed diagnosis, without monitoring, without any understanding of what the virus was about to do to my already fragile body.

Over the summer of 2020, I started writing down a timeline of worsening and new symptoms. I’d been documenting my health on my chronic illness social media account for years, and looking back at those posts, I could see the trajectory — things were getting worse in ways that didn’t match a typical recovery. Then I watched a presentation at the Dysautonomia International conference, held online that year, where my own doctor described persistent symptoms after COVID infection. I was watching my doctor present about the thing I was living through in real time.

Long COVID had layered itself on top of my ME/CFS, and it wasn’t going away.

In February 2021, I was reinfected. A home care nurse, wearing a cloth mask. I was wearing a Vogmask. Neither of us had N95s. That reinfection pushed me from moderate ME/CFS into severe. The ME/CFS diagnosis that had taken 18 years to arrive now defined nearly every hour of my day.

What happened next — the rolling PEM, the bedridden months, the loss of independence — I’ve written about in detail in my Rolling PEM series. I won’t retell it here. But I’ll say this: the name I’d waited 18 years to receive became the condition that nearly took everything from me.

What Having a Name Changes — And What It Doesn’t

A diagnosis doesn’t fix anything. I want to be honest about that. The day after I heard the words myalgic encephalomyelitis, my body felt exactly the same as it had the day before. The fatigue didn’t lift. The PEM didn’t stop. The long list of conditions I was managing didn’t get any shorter.

But a name changes how you see everything that came before it.

After the ME/CFS diagnosis, I looked back at 18 years of my life and saw it differently. The volleyball collapse wasn’t a teenager who couldn’t hack it. The hypersomnia wasn’t laziness. The weekends spent sleeping weren’t depression. The half marathon I couldn’t train for on consecutive days wasn’t poor discipline. The eight years on antidepressants weren’t treatment — they were a detour. Every doctor who shrugged, every test that came back “normal,” every time someone said I was too young or too anxious or too focused on my symptoms — none of that was my failure. It was the system’s.

That reframe doesn’t erase the grief. If anything, the ME/CFS diagnosis sharpens it. Because now I can see exactly how many years were lost to wrong answers, how many moments of my life were shaped by a condition nobody thought to look for. I can trace the thread all the way back to high school and see it clearly. And clarity, when it comes that late, is its own kind of pain.

But a name also gives you things you didn’t have before. Language — the ability to explain to someone what post-exertional malaise is instead of saying “I’m just really tired.” Community — other people who know what it’s like to crash after a shower, to ration their energy like a budget, to grieve the life they thought they’d have. Access to research, to protocols, to the collective knowledge of people who have been navigating this longer than you have. My blog, the strategies I share, the pacing and heart rate monitoring and MCAS protocols — none of that would exist if I hadn’t finally gotten the right name.

And a name gives you permission to stop doubting yourself. That might be the most important thing it gave me. After 18 years of being told it was growing pains, anemia, depression, stress — after learning to mask so well that nobody could see how sick I was — I finally had proof that I wasn’t making it up. That I had never been making it up.

I think about the version of me sitting in that Scripps dorm room, smelling like arabica beans, setting six alarms and sleeping through all of them, wondering what was wrong with her body. I think about her in the coral pink chair, watching a counselor flip to a bookmarked page. I think about her believing the depression diagnosis because she didn’t know she was allowed to question it.

I wish I could tell her: trust your body. Even when doctors don’t. Especially when doctors don’t. Your body is trying to tell you something, and the fact that no one is listening yet doesn’t mean it’s not real. The fatigue is not laziness. It is not weakness. And it’s okay to find a different doctor when the one you have doesn’t hear you.

I wish I could tell her that the right diagnosis will take time — too much time — and that the delay won’t be her fault. It’ll be a system that still doesn’t teach ME/CFS in most medical schools, that still has no approved treatments, that still lets millions of people go undiagnosed. The failure belongs to the system, not to her.

I can’t go back and tell her those things. But maybe someone reading this needs to hear them now. Maybe your ME/CFS diagnosis story is still being written. Maybe you’re in the middle of it right now.

Sometimes I catch the smell of coffee — in a café, from a passing stranger’s cup, drifting out of a shop door — and for a second I’m back in that dorm room. Back in that body that was already failing and didn’t know why. Eighteen years stretch out between that girl and the woman writing this, and most of those years were spent waiting for a name that should have come sooner.

If you’re still waiting for yours, I want you to know: you are not making it up. Your experience is real. It was always real. Even before anyone believed you. Even before you fully believed yourself.

You are not alone.