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.

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.

When Brea became ill for the first time, a neurologist told him that his symptoms were probably due to emotional trauma forgotten in his past.

NYU Langone’s rheumotologist, Paula Rackoff, MD, says that this type of reaction from the medical community is changing, thanks in part to an increase in female doctors.

“I think women respond to women differently [than men],” says Rackoff.

But skeptics remain disturbingly common.

Last week, Gaga posted about her problems on Instagram, and defended herself from critics.

“I use the word ‘suffer’ not out of pity or attention, and I was disappointed to see that people online suggest that I am being dramatic, I am inventing or interpreting the victim to leave the tour,” he wrote in an interview. Legend of the photo. “I use the word suffering not only because trauma and chronic pain have changed my life, but because they prevent me from leading a normal life.”

In his new Netflix documentary “Gaga: Five Foot Two”, broadcast now, the cameras follow him as he cries, shakes and goes to a doctor to inject a trigger point, in which a doctor injects medication into the muscles tight to numb the pain. radiating from his hip to his jaw.

“Do I look pathetic?” He asks in a scene as he cries. “I’m so embarrassed.”

Gaga not only cares about her own ability to manage pain, but also other people with the disease who do not have the same support system, or funds for treatment, that she has.

But even Gaga struggles to find doctors who know how to treat their still mysterious condition. In another scene, he says he prefers to try painful treatments than sitting on an MRI machine for hours, only to be told to take Advil at the end.

Brea blames the seriousness of his condition for the time it took him to find a doctor who believed her.

“I think there’s a good chance that if they had diagnosed me … before, I would not have gotten as sick as I had, and I might not have ended up in a wheelchair,” he says, adding that instead of resting initially, he pushed himself to exercise and work. Antiviral medications and recent changes in lifestyle have improved her fatigue, but she does not think it will ever “cure” completely.

She is concerned that misinformation and misdiagnoses may make it difficult for patients to also receive support from their loved ones.

“I think a lot of people end up thinking it’s in their heads, and their families sometimes do not know what to do,” says Brea. “Because they want to support the person they love, but when the expert says something different, it is very difficult to know who to believe. And that lack of medical education [on the part of doctors] contributes to families separating, to people who get divorced, to family members who are separated. ”

Brea says that while her husband was by her side from the first day, she still “regrets the way in which [her illness] has affected her dreams.”

Rackoff says that those who suspect that they have either of the two diseases are perfectly justified in seeking a second or third opinion. “Do not discard your instinct.”


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