There is a new series on Netflix called “Afflicted.” It chronicles the stories of seven people with chronic rare diseases and their struggle to cope with symptoms as they search for a diagnosis and cure for their ailments.
One of the featured patients on the show is Pilar, who has been sick for over two years after discovering a gas leak beneath her bedroom that had been slowly leaking for two years. After starting to get headaches, fatigue, food intolerances, and less tolerance for almost every smell and chemical, she started searching for answers. The doctors initially told her the symptoms were in her head. Three years after symptoms started however, the gas leak was found.
In the first season of “Afflicted”, a recurring theme seems to be that chronic illness can originate in the mind. They feature several doctors that say that questionable and undiagnosed symptoms can often be a psychiatric problem more than a physical problem.
In Pilar’s case, they only mention the cause of her reactions and symptoms once: the gas leak. They go into detail describing her chemical sensitivity. She has to remain almost completely isolated because her immune system has been compromised and smells and chemicals can aggravate her, causing debilitating headaches, pain, fatigue, and irritation.
Pilar’s body has a hard time flushing out toxins and she goes through traditional medical treatments as well as more alternative treatments like energy healing, oxygen treatments, infrared saunas, and lymphatic massage. She lives in isolation away from friends and family.
Pilar goes through about twelve treatments a week and they have cost about $200,000 over the past two years. The documentary shows her estranged husband working two jobs and digging into his savings account to finance her treatments. Pilar and her husband do not live together and she states that she does not love him anymore. He seems smitten with her still and refuses to leave her or give up on her even though the relationship is strained and they no longer live together.
However, in an article published on Medium.com, Pilar tells her side of the story.
Pilar says the director presented the documentary to her as an opportunity to raise awareness about rare chronic diseases and specifically to show that the symptoms were not a case of mental illness. Pilar was excited to spread the story of her pain and suffering and to help others who were going through rare chronic illnesses.
However, the documentary did actually question Pilar’s symptoms as a cause of emotional disturbance. Featured doctors and speakers on the documentary hinted that her symptoms might be a way to estrange herself from her husband.
For example, the doctor who says that her symptoms may be an emotional reaction to her marriage is Dr. Richard Friedman. He is a psychologist, not a medical doctor, and Pilar states she never met him and that he is not even familiar with her case.
Pilar says that anyone’s smell, clothes, sweat, or saliva could cause a reaction to her, Including friends and family, not just Jeff, her husband.
Pilar states that her chapter of the Afflicted version was like a television show and it portrayed her as a villain and her husband as a hero instead of focusing on the facts of her illness. She states that the filmmakers did not examine her medical records or history or talk about the cause of the illness (the gas leak) more than once.
Pilar also says that the savings Jeff used was both of their savings from a shared account and that he stopped covering her treatments months before the crew stopped filming and that they were aware of it.
Pilar says the filmmakers only used footage that supported their narrative and even manipulated scenarios and words to prove their own point.
The documentary even failed to mention most of Pilar’s diagnosis such as multiple chemical sensitivity, mast cell activation syndrome, toxic encephalopathy, autoimmune disorders, common variable immunodeficiency, hypogammaglobulinemia, chronic fatigue syndrome, and more.
According to Pilar, the unfortunate part is that the documentary spent so much time weaving an exciting but fabricated tale that the movement for awareness and increased research and understanding of chronic illnesses had been set back by the Netflix filmmakers.