“Afflicted,” a Netflix docuseries aimed at highlighting rare chronic illnesses, received backlash after its debut on the streaming service last month. Some of those loudest in their criticism? The people living with illnesses who were profiled on the show.
The cast members of “Afflicted” said they were asked to participate in a show that would highlight rare chronic diseases through a “compassionate lens.” However, several of the show’s subjects said they were misled by filmmakers. In essays collected by Medium, those members of the cast take issue with how their conditions were portrayed “as psychosomatic or psychiatric disorders,” the participants wrote, instead of showing them as illnesses that are separate from mental health conditions.
“Scientists with deep knowledge of the research literature ... were either not interviewed or their interviews ended up on the cutting room floor. Instead, ‘Afflicted’ frequently relies heavily on the skeptical voices of ‘experts’ who have no relevant professional or academic expertise in our diseases,” they continued.
Members of the chronic illness community empathized with those profiled in “Afflicted.” Many who live with chronic illness have a history of feeling misunderstood or questioned about their condition. I know, because I’m one of them.
The Frustrating Reality Of Chronic Illness
At age 19, I was diagnosed with fibromyalgia, a chronic pain condition affecting the nervous system. It is a notoriously difficult ― and painful ― diagnosis to get. A patient must present widespread pain in all four quadrants of the body for three months or more. It’s estimated that on average, getting an accurate diagnosis takes about five years.
I’d had widespread pain in varying degrees my whole life before a combination birth control pill seemed to trip something in my system. Suddenly, the pain was unbearable, gnawing and changing by the day. Every movement was a labor. Pangs torched my flanks, my calves, my chest. My head was so tender, I couldn’t rest it on a pillow. The pain was so constant, I slept only when it knocked me out, and I would have the sensation I was blacking out instead of falling asleep.
I went to the ER five times that summer. I’d barely left the house, except for scans and tests and doctor appointments ― all clean. In addition to frustration over all the lack of answers, I was also subjected to experts and others who questioned my perception of my pain or its source.
It didn’t end there. Just after my diagnosis, one medical professional told my elder brother that fibromyalgia was not real. There was also the doctor who mined my experiences in disbelief, looking for drugs to pin it on. Post-diagnosis, an expert on fibromyalgia told me that had I experienced this sort of pain 20 years ago, I’d have gotten a psychiatric evaluation instead of treatment.
And I am not alone. Approximately 133 million people in the United States have chronic illnesses — roughly 40 percent of the population. Some 40 million of them are limited in their day-to-day activities. Many go undiagnosed, with doctors and loved ones questioning their symptoms the whole way.
Sandi Connors, a resident of Princeton, New Jersey, has Ehlers-Danlos syndrome, a grouping of connective tissue disorders affecting the skin and joints. Her condition can be a tricky one to peg, as it mimics elements of rheumatoid arthritis, fibromyalgia and multiple sclerosis. She has dealt with many misunderstandings, frequently feeling blamed for her limitations or maligned by the medical community.
“We like to refer to ourselves as zebras, because the medical community is taught that when you hear hoofbeats, think horses, not zebras,” she said.
It’s difficult to tell when a person has EDS, one of many so-called invisible illnesses. Because of that, Connors said, it’s hard for others to understand why her day-to-day life is so limited.
“I frequently cannot get out of bed till late morning or early afternoon,” she said. “I cancel plans. I start projects I don’t finish. I’m depressed and frustrated. I’ve lost many friends and have cut quite a few people out of my life due to their toxicity and insensitivity. I had one friend tell me I had a pathology because of my history of incompletion of projects. I’ve tried going to school. People tell me to lose weight, exercise and I’ll feel better. I don’t have any weight-related diseases, despite having hypothyroidism, which makes it difficult to lose weight.”
“I frequently cannot get out of bed till late morning or early afternoon. I cancel plans. I start projects I don’t finish. I’m depressed and frustrated.”
People often tell Connors, “You don’t look sick,” which only adds to her frustration. Elisabeth R. Finch, a TV writer who has worked on shows like “Grey’s Anatomy,” has heard similar sentiments about her illness. She stressed that you simply can’t determine other people’s struggles by how they present themselves.
Finch has late-stage chondrosarcoma, a form of bone cancer that currently resides in her spine. It’s inoperable, but there’s one chemotherapy option that may prevent the cancer from getting bigger and spreading to other organs.
She has a full-time job, so she often gets up at 5 a.m. for treatments and appointments. She has weekly bloodwork, monthly chemo and X-rays and PET scans to help keep her illness in check. She has near-daily fights to be heard when it comes to her chronic condition.
“I don’t recall a week in six years where I haven’t been on the phone arguing with my insurance company about them adequately covering expenses for my lifesaving care,” she said.
Long before she started treatment, Finch said, she was passed over by her doctors.
“For several years, my cancer went undetected or misdiagnosed,” she said. “For several years, I walked around on crutches and cried myself to sleep at night from the debilitating pain. When my esteemed doctor could not find a scientific reason for my pain, he called me impatient, emotional and neurotic. He told me it was all in my head and then prescribed me anti-anxiety medication and antidepressants.”
“When my esteemed doctor could not find a scientific reason for my pain, he called me impatient, emotional and neurotic. He told me it was all in my head and then prescribed me anti-anxiety medication and antidepressants.”
Finch’s cancer grew inside her while she searched for answers. She had four failed surgeries. Eventually, she changed surgeons, and the new one found a mass. As her cancer has morphed into a chronic disease, she still deals with these misunderstandings and painful comments like, “Aren’t you done with that stuff yet?” from those she knows.
“And the most offensive thing I hear repeatedly from any new doctor I encounter: ‘You’re so young for that!’” she said. “Pointing that out only ostracizes or otherizes me more than I already feel.”
Finch said she feels lucky in certain ways, in that she eventually was heard and diagnosed properly ― particularly given that many other people aren’t as privileged. According to a study in The American Journal of Public Health, two-thirds of doctors displayed unconscious racial bias against African-American patients, with physicians showing less sensitivity to the needs of the patient, dominating discussions and commandeering important health-related decisions.
What Needs To Be Done To Shift The Culture Around Chronic Illness
Mike Dow, a psychotherapist and New York Times best-selling wellness author, said chronic illness needs to be treated with more “sensitivity and compassion” than it currently gets.
“We need to keep giving hope,” he said. “Many feel hopeless. And many have conditions that we don’t fully understand, so you can understand where the hopelessness comes from.”
Dow said patients are often overlooked, misunderstood, made to feel crazy about their experiences or accused of making up their symptoms.
“Rare conditions can be seen in brain scans,” he said. “Many of them are a complex cocktail ― a gene that has been activated by exposure to a virus or childhood stress. They’re not black and white like a bacterial infection. They’re harder to diagnose and treat.”
“We need to keep giving hope. Many feel hopeless. And many have conditions that we don’t fully understand, so you can understand where the hopelessness comes from.”
Certain treatments can often feel like a Band-Aid on a bleeding wound. Connors hasn’t been able to work since 2006, after tearing ligaments in her right shoulder. She can’t take painkillers because of a seizure disorder. She has had 14 surgeries related to her condition in addition to other kinds of treatment. With poor manual dexterity and frequent insomnia, she calls her days now “long and boring.”
Her pain is something few others see or can fully understand. Her message to others is simply that “until you wake up in a body” like hers, “don’t judge” and “stop shaming.”
Karla Ivankovich, a clinical counselor at the OnePatient Global Health Initiative, a Chicago nonprofit committed to providing quality health care in underserved populations, said, “No matter how far medicine has come, anything outside of the norm is still stigmatized today.” She insisted that no one should feel entitled to tell other people experiencing pain how they feel — physically or emotionally.
“Yet we have become a nation of people who jump at the chance to play judge and jury,” she said. “This group on [‘Afflicted’] and many others are in pain, experience these illnesses and should be treated with the same compassion and understanding that would be granted to anyone who is ill.”
“One of the major challenges in chronic illness is the lack of a proper diagnosis. It’s a very real problem, and misdiagnoses or lack of diagnosis can causes a great deal of physical and emotional distress.”
I cried many times that summer right before I was diagnosed with fibromyalgia, insisting that what I felt was not in my head. I grew up a type-A high achiever with a strong sense of self, and never had I felt so minimized or confused about what I was experiencing than when I was in the early stages of recognizing my condition.
Years later, I now have a clinical diagnosis, confirmed through testing at Massachusetts General Hospital. Additionally, I have a condition that underlies my fibromyalgia that also affects my nerves, leaving extremely poor pain regulation throughout my body. The diagnosis was validation for what I’ve been feeling all along, but I still feel bitterness from time to time about my struggle getting there.
Many of the participants in Netflix’s “Afflicted” have not been as lucky as I was and have yet to receive a definitive medical diagnosis.
“One of the major challenges in chronic illness is the lack of a proper diagnosis,” Finch said. “It’s a very real problem, and misdiagnoses or lack of diagnosis can cause a great deal of physical and emotional distress.”
Finch said it makes sense that the show’s producers included some patients who don’t have definitive diagnoses, but she added that “presenting an entire series of undiagnosed illnesses and calling it a documentary about chronic illness gives the impression that all chronic illness is dubious at best ― and that these patients are just desperate, misguided, attention seeking” or have a mental illness, which is altogether separate, she said.
Mental illnesses are real conditions and worthy causes in their own right. So are tough-to-diagnose chronic illnesses. And we have to watch out about the insinuation that it is all in one’s head. That has gone on for too long and prevents us from having discussions that could lead to more understanding and better medical care.
In a statement to HuffPost, Dan Partland, an executive producer of “Afflicted,” encouraged such a discourse.
“We are saddened and upset by some of the reaction to the series,” he said. “Our intention was to give the world a compassionate window into the difficulties of patients and families suffering from elusive and misunderstood illnesses, to humanize their struggle, and to show that struggle in all its complexity. The participants in ‘Afflicted’ showed incredible courage in sharing their stories and we respect the thoughtfulness with which they have entered the online discussion, even when they have been critical of us. The conditions they, and others, are suffering from are real and deserve more attention.”