Netflix series Afflicted

When Jamison, who suffers from the same chronic illness  I do, was approached to take part in Netflix series Afflicted he was told the series would be filmed “through a compassionate lens”.

Jamison and the other participants, who all live with different misunderstood chronic health conditions, bravely agreed to have their lives and struggles documented. Reading this post  most subjects agreed to take part in Afflicted to raise awareness, reduce stigma and increase public understanding. To promote research and subsequent treatment developments for their conditions.

What actually happened;

Instead they were lied too, manipulated, and their stories were shaped to fit the narrative that Netflix wanted to tell. So to sum up Netflix decided to take people from a vulnerable, misunderstood minority group and tell a story which insinuated that they are at best mentally ill, and at worst manipulative liars.

As someone who lives with ME/CFS, one of the conditions featured in the series, I feel that this decision will lead to yet more disbelief, misunderstanding and anger towards myself and the rest of the chronic illness community. Like we don’t have enough shit to deal with!

How did Netflix manipulate the narrative of Afflicted:

They made the participants and their families and friends into puppets. They insisted they repeat the interview questions each time before answering them.Then used them saying the original questions (words which Netflix had ultimately scripted) and other fragments of interviews to create statements which were never said.

They interviewed experts in each participant’s condition, for example Stanford university professors who study ME/CFS. However they never used these interviews in the finished documentary. Instead they used interviews with psychiatrists (why? None of the participants are mentally ill), alternative therapists and doctors not qualified to comment. I’m guessing the real experts didn’t say what they wanted to hear/use in their preconstructed narrative.

They then took the psychiatrists statements about psychosomatic illness and used them over film of the participants taking part in treatments. Such as a special bath that one of the participants takes to help with her condition, and Jamison in his blow up bath which he needs to use as he cannot access a bathroom. The insinuation that these conditions are psychosomatic is clear.

They failed to share medical evidence proving that participants have been diagnosed by medical professionals with the conditions they have. Such as positive results on standard Lyme tests. The reason behind this omission is clear, how do they paint chronically ill people as ‘cuckoo for coco puffs’ (a statement used in the documentary completely out of context) if there is evidence that we are not.

As someone with a chronic illness this series made me feel:

Angry. Really very cross. Those of us who suffer from a medical condition that is not easily diagnosed, or treated, have all dealt with doubt about the validity of our illness.

We’ve been disbelieved by doctors, family, friends and larger society. We’ve doubted ourselves.

I doubt myself on a regular basis. I’ve worried that I’m neurotic, lazy, and/or the cause of my health conditions. I’ve tried to snap out of it, or pull through and made myself more unwell in the process. Any thought Netflix wanted to plant into the heads of the viewers of Afflicted is one that most chronic illness suffers have had for themselves, about themselves!

Throughout history chronically unwell people, especially women, have been doubted while medicine struggles to catch up. Many now widely accepted, proven conditions, such as MS, started out being labelled as neurosis.

Afflicted contributes to this. Afflicted takes societies most vulnerable, marginalised people and not only doubts, but points a finger, stares and makes comments under it’s breath about us. It plants that seed of doubt that can grow. It potentially prevents progress, understanding and even basic support from doubting loved ones, and professionals.

I believe Netflix has a social responsibility to take a look at Afflicted and consider the impact it will have. Unfortunately it doesn’t look like they will.

They are currently looking for participants for a series called Undiagnosed  which will ostensibly take people undiagnosed health condition and use crowdsourcing to look for answers. After what happened to the participants of Afflicted I would be seriously concerned about Netflix’s motivation for Undiagnosed. After all they have already shown us how they feel about chronic illness.