Four Years of Fatigue, Filed Under Depression

The notebook begins in February 2018, the month Mara got mononucleosis. She was 28 and ran most days, usually before work, with a longer route on weekends. In the first pages, she recorded a sore throat, swollen glands and the result of a blood test. Then she left space.

She assumed she would recover.

Six weeks later, she wrote one sentence: “Still exhausted after shower.”

The notebook had been meant for running. Before she got sick, Mara used it to track distance and how a route felt. Now the entries measured a narrower life. She wrote down which days she made it through work, how long she slept and what happened after she tried to exercise.

A slow two-mile jog in April was followed by two days in bed, with aching legs and a heaviness she could not account for. A short walk in May cost her most of the next weekend.

Her primary care doctor ordered bloodwork. The results did not identify anemia, thyroid disease or another common explanation for persistent fatigue. The mononucleosis appeared to have passed. Mara had not.

At the next visit, the doctor asked about her mood. Mara said she was frightened and increasingly unhappy, which seemed to her like a proportionate response to being sick for three months. She was still working full time, though she spent evenings lying down and had stopped seeing friends unless they came to her apartment.

“At this point, we have to consider depression,” the doctor told her.

Mara wrote the sentence in the notebook after the appointment. Beneath it, she added that she wanted to run. The distinction mattered to her: she had not lost interest in the life she knew; attempts to return to it made her physically worse, often after a delay, and neither sleep nor determination restored what the effort took.

The doctor referred her to a therapist and prescribed an antidepressant. Mara accepted both. She did not object to psychological care, and by then she was willing to test almost any explanation that came with the possibility of improvement. For nine months, she attended appointments and took the medication.

Therapy gave her a place to speak about fear and the shrinking boundaries of her days. Her stamina did not return.

By January 2019, the notebook contained a repeated sequence. Activity appeared on one page. The consequences appeared on the next. Grocery shopping on Saturday was followed by muscle pain and difficulty concentrating on Sunday.

A work presentation that required her to stand and speak for an hour preceded two days when she struggled to follow email threads. She called these periods crashes because she did not yet have another term.

The language available in her medical record was different. Notes referred to low motivation, stress and possible somatic symptoms. One doctor suggested that resuming exercise would improve her energy and mood. Mara tried, despite what the notebook showed, because the recommendation came with the authority she had been told to trust.

She began with short runs. After the third attempt, she missed two days of work.

Eight months after the depression diagnosis, Mara asked whether the pattern could still be related to the infection. Her doctor said prolonged fatigue could follow mononucleosis but emphasized that her tests were reassuring. Reassuring became a word she heard whenever evidence of organ damage or a familiar disease failed to appear, even though normal results did not explain why she could no longer do what she had done before February 2018.

The dismissal was rarely dramatic. No one ordered her out of an exam room. Doctors lowered their voices and told her that depression was common, that stress could produce physical symptoms, that she should give treatment time. Each statement could be true in another context.

Together, they made her account of exertion and relapse seem like resistance to a diagnosis rather than evidence against it.

Mara reduced her workweek in the spring of 2019. The change cut her income by $760 a month, but it allowed her to preserve enough energy to keep the job. She stopped running. She kept her shoes near the door for another year, then moved them into a closet without writing that down.

The notebook continued. By then, she had started marking the delay between an activity and its cost. The worsening did not always arrive during exertion. She could finish a family dinner feeling tired but functional, sleep for ten hours, then wake the next day with a sore throat, pain and slowed thinking.

That lag complicated every appointment, because a brief office visit showed a woman who could sit upright and answer questions, not the following day when she could not prepare food.

In September 2020, a psychiatrist reviewed the history and asked what happened after physical effort. Mara opened the notebook. She showed him the two-mile run from 2018, the missed workdays after later attempts and the same pattern after errands or social visits. He told her that she might now have depression as a consequence of prolonged illness, but that depression did not account for the consistent worsening after exertion she had documented.

It was the first time in more than two years that a clinician separated her emotional state from the cause of her physical limits.

The psychiatrist’s note prompted another referral. The wait for a specialist was eleven months. During that period, Mara’s insurance changed and the first referral had to be submitted again. She called the number on the back of the card, then the doctor’s office, and learned that approval did not make an appointment available sooner.

The notebook acquired a page for calls, but she stopped recording every one. The dates were evidence of waiting, not progress.

She also stopped trying to prove that she was not depressed. That argument had required her to minimize how demoralized she had become, as if sadness would invalidate the physical pattern or happiness would establish it. She was grieving a body she could no longer predict. She was angry at doctors.

Some mornings she dreaded getting out of bed. None of that changed what happened after she exceeded her limits.

In August 2021, three and a half years after mononucleosis, the specialist took a history that lasted longer than Mara expected. The questions followed function over time: what she had been able to do before the infection, what she could do now, whether rest restored her and whether exertion led to delayed worsening. The specialist also reviewed prior testing and considered other conditions that might account for the symptoms.

Mara brought the notebook. Its value was not that it contained a perfect medical record. It did not. There were missing weeks, abandoned tracking systems and entries written after events rather than during them.

What it showed was continuity. The same relationship between effort and deterioration appeared in 2018, before years of medical conflict could be blamed for shaping her expectations, and it remained visible through work changes, therapy and medication.

The specialist discussed myalgic encephalomyelitis/chronic fatigue syndrome, commonly written as ME/CFS. The illness is associated with a substantial reduction in previous activity, unrefreshing sleep and cognitive difficulty; a central feature is post-exertional malaise, the worsening of symptoms after physical or mental effort. There is no single laboratory result that establishes the condition. For Mara, that absence had been treated for years as evidence that her illness belonged somewhere else.

The specialist documented ME/CFS in December 2021, four years and ten months after the infection began. Mara had expected that a name would produce relief. It did, for part of an afternoon. Then she read the visit note again and saw how much of the diagnosis depended on losses she had spent years trying to reverse.

There was no return to running. The new label did not settle whether the mononucleosis had caused the illness, although it fixed the beginning of Mara’s decline in the medical history where she believed it belonged. It also did not erase the depression diagnosis. Both remained in her chart, one above the other, available to the next clinician.

In March 2022, Mara saw a new primary care doctor. When the doctor asked about exercise, she felt the old argument gathering. She opened the notebook to the page from April 2018 and then to the specialist’s note. The conversation changed.

They spoke about what happened after exertion rather than whether she was willing to make an effort.

Four years earlier, the notebook had contained weekly mileage. Now Mara used it to decide whether she could wash her clothes on the same day she answered work email. On a Tuesday after that appointment, she wrote down “laundry” and left the line beneath it blank.

Questions people ask

Why did doctors think Mara's fatigue was depression?

Routine testing did not reveal a common explanation, and Mara reported feeling frightened and unhappy as her life narrowed. Clinicians described low motivation, stress and possible somatic symptoms, even though she still wanted to run and repeatedly worsened after exertion.

How did Mara's notebook help her receive an ME/CFS diagnosis?

The notebook connected activities with delayed pain, cognitive difficulty and days of reduced function. A psychiatrist recognized that depression did not explain this repeated pattern, and a specialist later used its continuity alongside her history and prior testing.

What changed after Mara was diagnosed with ME/CFS?

The diagnosis named her pattern and placed it in her medical record, but it did not restore her stamina or settle whether mononucleosis caused the illness. With a new primary care doctor, the conversation shifted from her willingness to exercise to what happened after exertion.