Chronic conditions not well represented in ‘Afflicted’
Last month, a documentary titled ‘Afflicted’ which focused on profiling uncommon chronic conditions, debuted on Netflix online channels. However, the fiery feedbacks from the chronic illness community and the participants featured in the show indicated that Netflix got it wrong this time.
The bone of contention centers around an accusation that Netflix approached the participants with the impression of broadcasting the rare conditions through an ‘affectionate viewpoint’. On the contrary, many claimed to be deceived by the producers. Their grievances lied on how their illnesses were exhibited “as psychiatric and psychosomatic conditions.” Meanwhile, chronic conditions differ from mental problems.
In their statement, experts who have core knowledge about the issue were ignored in the entire production. Only pessimistic opinions of specialists with no relevant expertise in that line were used.
It is common for chronic illness patients to be misunderstood, neglected and questioned regarding their conditions. Here are three examples of women who are suffering a similar fate.
The truths about chronic illnesses
Jenna Birch was 19 when she got infected with fibromyalgia, a severely painful condition that attacks people’s nervous system. Fibromyalgia is an infamously tough and severely painful medical examination to come by. A victim must show extensive evidence of pain at every point of his or her body for more than 3 months. Reported estimation shows that an average precise examination takes around 5 years.
Birch had an extensive pain of different degrees in every part of her entire life prior to when a combined contraceptive (birth control) triggered something in her body. Then in a shocking flash, the pain escalated, biting hard and changing every day. Her movements became difficult. Birch narrated how pangs shut through her chest, flanks, and calves. A cozy sleep deserted her and she usually felt like her spirit was slipping away.
During that summer alone, she visited the ER 5 different times. She recalled that all her outings away from home were limited to only tests, doctors’ appointments and scans, but she came out clean. She had loads of questions but no answers, which led to further frustration, and she also endured questions from specialists and other people about her view regarding the roots of her pains.
As if she wasn’t going through enough hardship already, one doctor tried to convince her older brother about the unreality of fibromyalgia, not long after she was diagnosed. Another doctor didn’t believe her story, rather the medical practitioner attempted to blame it on some drugs. One health professional on issues surrounding fibromyalgia, told her after diagnosis, that if she had gone through such pain 2 decades earlier, in place of this treatment, she would have done a psychiatric examination instead.
Research shows that Birch is not the only chronic illness sufferer. She confirmed that roughly 132 million victims scattered across the United States suffer chronic illnesses, about 40% of the whole population. Around 40 million out of this figure are restricted in their everyday endeavors. A huge number don’t get a diagnosis, while doctors and relations quiz their signs all along.
Good intentions, bad portrayal
Among the 132 million victims is Sandi Connors, who resides in Princeton, New Jersey. Connors is an enduring Ehlers-Danlos syndrome, an array of linked tissue diseases attacking the joints and skin. Her sickness is difficult to specify because its symptoms imitate some rheumatoid arthritis signs, multiple sclerosis, and fibromyalgia. Connors has handled lots of misunderstandings, constantly shouldering blames for what she is going through or scorned by doctors.
People cannot easily identify an EDS patient, it is not visible to the eye. Therefore, she said that others may not understand the reason behind her daily life imitations.
For Elisabeth Finch, chondrosarcoma at its late stage is her condition, which depicts cancer of the bone type, which is now sitting in Finch’s spine. Operation is impossible but one can get an alternative chemotherapy which may stop the spreading and enlarging of cancer to the remaining organs.
Her daily routine involves rising at 5 am every day for therapies and check-ups, because she works full-time. Her roster includes a bloodwork every week, a chemo every month, PET scans and X-rays meant to assist in keeping her sickness under control. She experiences fights almost on daily basis regarding her chronic disease.
Responding to the allegations, one of the executive producers for the controversial series ‘Afflicted’, Dan Portland, said the team is unhappy and bitter when they got some responses concerning the program. He said the management’s intention was aimed at offering an affectionate “window” through which they could see the pain the victims and their families undergo in the hands of tricky and misconceived sicknesses, bring humanity to their effort, and to showcase that effort in its every ramification.
He applauded the ‘Afflicted’ cast for their extraordinary bravery in telling their own stories and the production team appreciated the mature way they joined the online conversation, despite their criticisms. Portland affirmed that their sicknesses are not a fallacy and they need better attention.