When you are in constant pain and nobody believes you

Jennifer Brea was 28 years old when she found herself unable to finish a walk or ride a bike, she went home halfway and slept for hours.

“In a way, I thought: ‘Oh, maybe I’m just getting old,’” says the director and protagonist of the new documentary “El malavos”. “I was only 28 years old and I was thinking: ‘Maybe I’m just getting old? ‘And one part is because I kept going to the doctor and he said to me:’ You’re fine, you’re fine, you’re fine ‘”.

She was not well, her fatigue got worse and soon she got her Ph.D. from Harvard, Ph.D. Student could not complete sentences or even send an email. But the doctors still could not identify anything that was probably wrong with her, and she was finally told that she had a “conversion disorder”: a modern version of hysteria.

Actually, Brea, who is now 35 and lives in California, has chronic fatigue syndrome, or CFS, also known as myalgic encephalomyelitis. The condition causes severe exhaustion, brain fog and, often, pain. He suspects that his case was triggered by a fever of one day in 2011, although little is known about the causes of chronic fatigue.

His documentary, now shown at the IFC Center, chronicles his battle with CFS, and the stigma attached to the little-known disease: because the condition is still under the radar, many believe that those with CFS are simply tired Or exaggerate. the symptoms.

The Brea crusade is gaining popularity, thanks in part to a handful of celebrities who have opened their own struggles against chronic and difficult to diagnose diseases.

Singer Lady Gaga made news earlier this month when she announced she was suffering from fibromyalgia, another chronic pain condition. She canceled a stage of a tour to recover, but even she faced the reaction of fans who did not believe her illness was real.

With both conditions, there is no blood test to confirm a diagnosis; Rather, the diagnoses are made based on the self-reported symptoms of a patient, such as pain above and below the hips in the case of fibromyalgia.

Although there is research on the biomarkers of each condition (for example, high levels of certain proteins in the blood), it is difficult to know with certainty if a person has a condition.

Another problem: it is estimated that women are six times more likely to have CFS than men and twice as likely to have fibromyalgia.

Historically, women who report symptoms such as extreme pain and fatigue are described as “hysterical” and are often treated as if their conditions were purely psychological.

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