I’m Tired of Chronic Fatigue Being Misunderstood

As told to Jacquelyne Froeber

I moved to Manhattan in my early 20s for a job in television production. I worked as a producer for shows on ABC News and Showtime, and I loved the fast pace of the job and the city. Between work and friends, I was constantly on the go and there was never a shortage of fun things to do.

But everything changed when I was 26.

I started having joint and muscle pain I couldn’t explain. My fingers and toes were constantly tingling — like they’d fallen asleep — but I had trouble sleeping and terrible brain fog.

One afternoon, I felt good enough to walk across the Williamsburg Bridge to meet a friend, but afterward, my whole body felt like it was on fire. My lymph nodes bulged out of my neck, and my throat was so sore I could barely swallow. I knew something was wrong.

The first healthcare provider (HCP) I saw ordered a bunch of tests but couldn’t find anything that would explain my symptoms. He referred me to different specialists who all said the same thing: We’re not sure what’s wrong with you. There were times when an HCP thought we were close to a diagnosis, but it never checked out.

Months into the rotation of referrals, I had an appointment with a well-known neurologist, and I crossed my fingers that he would have answers.

“Do you have a boyfriend?” he asked.

I paused. Not a question I was expecting. “Not right now,” I said.

“All your symptoms would get a lot better if you had a boyfriend,” he said. “Women your age need to have boyfriends.”

I was shocked and chuckled uncomfortably. I figured he was making a bad joke on the way to a diagnosis. But it turned out that a boyfriend was his real solution.

I left the appointment visibly shaking. I wondered how, in 2014, a woman seeking medical help for an unknown health condition could be treated so poorly. Years later, I would learn that women are significantly more likely to report not being taken seriously by medical evaluators — a pattern that extends far beyond just one bad doctor.

Unfortunately, Dr. Boyfriend wasn’t the last HCP who didn’t take me seriously, and my symptoms only got worse. I eventually had to quit my job to see HCPs full time.

Around the ninth misdiagnosis, I realized that if I didn’t find out what was going on with me, no one would. For months, I spent what little bit of energy I had pouring over information on the internet and in medical journals.

One day, I read about post-exertional malaise (PEM), which is when symptoms like pain, fatigue and brain fog flare up after physical, mental or emotional activity. My mind immediately went to the time I crossed the Williamsburg Bridge, and I cried. I knew I had my diagnosis. PEM is a hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A complex, severely debilitating physiological illness that can affect the entire body.

There were two specialists in Manhattan and both of them diagnosed me with the condition. I was relieved to stop the carousel of random HCPs but devastated to learn that there were no FDA-approved treatments or medications for ME/CFS.

It was also extremely frustrating to finally have a diagnosis, but when people looked it up, all they’d see was “chronic fatigue syndrome” and think I was just tired. I’d send people medical articles and try to explain the wide range of symptoms — electric shocks in my arms, severe brain fog that felt like my mind was shutting down — but there were no resources out there to accurately describe what was happening or how complex the condition really is.

In 2016, not long after my official diagnosis, I had a massive “crash” or flare up of symptoms. My lymph nodes and throat were swollen and painful, and my legs stopped working properly — like they had turned into JELL-O.

I knew something was happening and it wasn’t good. I hailed the first cab I saw outside of my apartment and went straight to my parent’s house in Connecticut.

I’d developed very severe ME/CFS and could no longer do the simplest movements. I couldn’t wiggle my toes or bend my fingers. Even the sucking motion of a straw was a struggle, and the smallest sip of a smoothie took everything out of me. My parents hired caretakers to help me with basic tasks like brushing my teeth and turning my body so I didn’t get bed sores.

The worst part was that I lost the ability to speak. I was trapped in my own body without a way to communicate — a hell I wouldn’t wish on anyone’s worst enemy. I suffered every moment of every day, but losing my voice was torture.

With no FDA-approved treatments available, I was given numerous off-label medications to see if anything helped improve my condition. I knew some people with ME/CFS see improvements with off-label treatments — but not everyone does.

Thankfully, after 2½ years of being completely bedbound, I started showing improvements. I gradually started speaking again and progressed to simple quality of life tasks like using an iPad.

And after finally getting my voice back, I knew that I wanted to use it to bring awareness to this poorly understood condition. In March 2024, I launched #NotJustFatigue — an educational resource for everyone from government officials to friends and family to learn about ME/CFS and the stigma surrounding it. Decades of misinformation have unfortunately taken a toll on how we view this debilitating, chronic illness. It wasn’t long ago — 2017 — that the Centers for Disease Control and Prevention recommended exercise and cognitive behavioral therapy as treatments for ME/CFS. They’ve since taken the recommendation down, but no progress has been made regarding treatment options.

More recently, #NotJustFatigue partnered with researchers to release the Invisible Illness Report — the first comprehensive survey examining the economic impact of ME/CFS on individuals and families. The survey found what I would have guessed: Almost all people (94%) with ME/CFS saw some interruption in their professional lives. And 1 in 4 said their diagnosis forced them to leave the workforce entirely.

People with ME/CFS that were able to work retained only 57% of their pre-illness income on average. Women were hit particularly hard, maintaining just 49% of their previous earnings compared to 63% for men. Perhaps most telling, nearly half of women reported not being taken seriously by disability evaluators, compared to a third of men.

It’s because of these tangible ripple effects of ME/CFS that I’ve been meeting with congressional staffers to advocate for government funding for clinical trials. As a person who’s been bedbound for nine years because of the condition, I know hope is what keeps you going, and what we really need are clinical trials. We need to know the people who’ve improved, why they’ve improved and if other people can improve in the same way. There are millions of people living with ME/CFS. Anyone can get it at any time, and women are three times more likely to develop the condition than men.

It’s been almost a decade since my diagnosis, and I’m beyond ready for progress. It’s frustrating to think that if the government had invested in finding treatments for the disease, maybe my life would be different. But my focus now is taking it day by day and holding onto hope for the future. Hope that doctors will be fully educated about ME/CFS in medical school and there will be specialists and medical centers and treatment options for people living with the disease. It’s what everyone with ME/CFS deserves.

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