Tag: mold

On August 10th Netflix released Afflicted, a seven-episode series in which I appear with six other chronically ill patients. Though I had high hopes for the series, and some parts were accurate, it has ultimately caused damage to the chronic illness community, portraying many of the participants as hypochondriacs and the illnesses they face as psychosomatic rather than their true physical nature.

I have debated about writing this blog post because in being honest about my experiences with Afflicted, I felt it might diminish my story and the stories of my fellow participants. I also didn’t want to diminish the work of some truly talented and genuine people who worked on the series and just happened to land a bad gig. But above all else, I felt like the series was an unjust outcome that needed to be brought to the public’s attention. And now that’s what I intend to do.

I’m not victimizing myself, or anyone else, but I am incredibly disappointed with the scope and slant of the overall series.

Nevertheless, I am still proud of my part in the series. There were some truly memorable moments to my story, glimpses into my life that I’m so grateful to have documented and to be able to revisit in the future. When filming commenced I had been bedridden for two years and was mostly unable to speak but for a few short, whispered words each day. The year and a half prior to that I had been too sick to chew food and had to survive on IV fluids and liquefied meals.

When I was approached about being in Afflicted, I had already written several essays about my fight for survival, but having it told visually was appealing to me. However, this meant giving control of the narrative to people who, unbeknownst to me at the time, had a dishonest agenda. That’s why, perhaps out of sheer instinct, I worked extremely hard to make sure my story was told in the best possible light. Now, after watching the finished product, I feel it very easily could have gone the other way.

In the days following the show’s release I’ve wondered why my story turned out relatively well when others did not. Perhaps I was the most debilitated participant and because I usually couldn’t speak loud enough for the microphones to pick up my voice, the producers decided to take it easy on me. It could also have been because, while on camera, I was fully aware that although the filmmakers said they had good intentions, people with ulterior motives can seem altruistic if they say the right thing in the right situation.

Casting

In the spring of 2017 I was contacted by a casting producer for DocShop Productions, the production company working on Afflicted. The producer told me that if I made it on the series I, along with several other people, would be filmed living with a chronic illness and through a “compassionate lens.”

I was looking forward to being on camera again and having a stark comparison to my much healthier depiction in Forgotten Plague, an excellent documentary about ME/CFS. Plus, there was something about having my story seen on Netflix that I felt would make its complicated nature easier for people to understand.

First, in order to even get in the documentary, I had to do two rounds of interviews via Skype. I was feeling well enough but the interviews were each over an hour long and that seemed like a lot to ask of someone who couldn’t even lift a water glass. After all, the casting producer knew how sick I was, he knew it was painful for me to talk and to look at a screen, but he seemed to have no problem putting me through the physical torture. At one point he even asked “Does it hurt to talk this much? Are you in pain?” to which I nodded my head, and then unsympathetically, he continued asking me questions.

I soon learned that this producer had been on a popular reality TV show at one point, but I didn’t think much of that — he said I would be in a documentary, not a reality TV show.

Eventually I got through the casting interviews and the producer, tantalized by the thought of me potentially being well enough to go outside for the first time in years, liked my story enough to interview my family.

Once I was accepted by the casting department I was given the task of getting a professional psychiatric evaluation, which was tricky considering I was too physically debilitated to travel to a psychologist’s office. But with help of my mom and a local doctor, we figured it out. I passed with flying colors.

So not only did I do the psych evaluation, but after that ordeal was over I had to have my online presence analyzed by a private investigation firm. I had to accept a friend request from some random account on Facebook so private investigators could look through all my photos and posts. I also had to confirm every address at which I’ve ever lived.

It was around this time that I learned that I would not be paid for my time and effort on Afflicted. For ethical and journalistic reasons, documentary subjects are never paid. My issue is that it’s now obvious that DocShop and Netflix intended to make not a documentary, but rather a reality TV show. People on reality TV shows usually get paid for the entertainment they provide, but none of us did.

I was about to undertake a process in which me and my family would devote dozens of hours without pay and under false pretenses. In fact, we’d end up losing money because of the footprint the production company left on our property and lives.

Filming

The first red flag, which I should have seen but didn’t, was when one of the producers had me remove my midline IV — a foot long vein-dwelling catheter in my arm. Then, so the cameras could film the minor surgical procedure, I asked my nurse to come out and insert a second midline. If this doesn’t sound like a big deal, let me emphasize — at the producer’s request, my mom pulled out a foot of tiny plastic tubing from inside my arm and then, using a scalpel, my nurse made an incision in my other arm in order to insert the new tubing. There was blood and gauze, the whole deal, but none of the footage ever made it in the finished film. But the worst part was the producers said they’d pay for the procedure and didn’t.

And I’m not convinced they ever really intended to use the footage either. They didn’t interview my nurse who did the procedure, I never even saw the producers have him sign a release to appear on camera. I asked one of the producers about this and her response: “Oh, I forgot.” So she was either incredibly incompetent, or there was something she wasn’t telling me. I can’t imagine the producers wanted to see me suffer through surgery for nothing, but maybe they did so in order to make me believe they were focusing more on the science and medical aspects of my illness when really they cared more about psychobabble. The only other rationale I can think of is that during post-production the editors felt the surgery wasn’t important enough to fit into my story, but that seems absurd. It’s a medical mystery show and a medical procedure isn’t important enough to make the final cut? Either way, they asked me to do a completely unnecessary medical procedure for the cameras and it never made it into the film.

The second red flag came when the film crew was filming my mom at a local restaurant and a stranger asked a producer what the series was about. The producer said, “mental illness.” Though it’s certainly an important topic, I do not have a mental illness nor did the producers tell me that the series was about anything mental health related. I confronted the producer and he said he was joking, that it’s just something he says to scare people off when filming in public places (that alone is a red flag).

Now that Afflicted has come out, it’s apparent that he wasn’t entirely joking. His “joke” immediately popped back into my mind as I watched the so-called “experts” he interviewed on the show and how they rattled off nonsensical psychobabble about physical illnesses — essentially denying that some of the illnesses portrayed on the show are physical, instead insisting they originate in the mind. More alarming however, was how the editors of the film cut the audio and video to make comments from “experts” pertain to the illnesses on the show, which they may not have even been referring to.

Luckily for me my mental stability was reinforced when Dr. Eric Gordon came to evaluate and treat my condition, a segment that appears in episode two. In one scene he is heard saying: “This is an incredibly well adjusted young man. This is not an emotional problem.”

Even still, most of the other participants were not so lucky and the producers capitalized on their vulnerabilities. I told one of the producers that because she herself had a chronic illness, she should be ashamed of how her crew misled the people in the series.

Before I convinced Dr. Gordon to come see me, that same producer got frustrated and wanted me to travel four hours to the Bay Area to see an ME specialist even though I was physically unable. We exchanged the following text messages:

I thought she was joking, and she probably was at the time, but shortly thereafter that same producer contacted my mom and actually suggested that she give me a tranquilizer and transport me to a doctor.

However, not all of the film crew was this bad — I liked the first cinematographer, he was very respectful and seemed to genuinely care about my comfort level. But he had to leave after a few days and another cinematographer replaced him. This guy was odd, to say the least. He kept referring to my mom as “Mommy” when talking to me. He also had an unusual affinity for my inflatable bathtub, repeatedly telling me that he wanted to get one so he could bathe in his backyard. I did not enjoy having this guy in my space; he started walking in on me with a camera while I was using the “bathroom,” a very private part of my daily routine that I explicitly told the crew they could not film.

Post-Production

It’s impossible for me to know what happened to my story, and the series as a whole, during the editing process. But based on the footage I saw the film crew capture compared with the footage that actually appeared in the finished product, it’s fair to say that there was a coordinated plan between the post-production team and the field producers who oversaw filming.

At one point in the series the producers include an iPhone video I took the winter before they showed up to film. They included the video of the snow falling outside my window to show time passing. The problem is: that didn’t actually happen. The video made it seem like the crew was at my house filming during the snow and winter, or at least that the video was taken during the time they were documenting my life. In realty they only filmed me during July, August, and September; no snow.

Additionally, the other day my mom reminded me of how our answers were manipulated during on-camera interviews. The producers had us begin our responses by repeating the question they asked, which is fairly typical for an on-camera interview, but for these producers it was a way of putting words in our mouths. They would insert words into their questions that none of us would normally use and force us to incorporate them in our answers.

There is one scene in the first episode of the series where my mom says: “At first you’d always be questioning … the whole hypochondria … is there some psychological reason?” In that part of the film her voice is dubbed over shots of me bathing, and it appears as though she’s saying there was a time when my loved ones thought I was a hypochondriac, but I know for a fact that’s not what she meant. For starters, later in the episode she says: “Jamison’s a fighter. If he can’t do something it’s because he can’t do it.” Now, does that sound like a quote from someone who has ever thought her son was a hypochondriac? No way!

My mom can’t remember the question the producers asked in order to create that sound bite, but she probably wasn’t even talking about me, she was using the second-person, likely to describe a general scenario that other, less supported ME/CFS patients in similar situations endure. Nonetheless, through a combination of deceptive questioning and clever editing techniques, the producers created a false reality for her and me in that scene.

If you watch the entire series you’ll notice several people, mostly doctors and the subjects’ family members, also use “hypochondria” in their interviews. What are the odds that several people in the same film just happened to use identical words and phrases?

In my opinion these interviews, and the strategically chosen words used in the questioning, were carefully orchestrated by the producers so they could later mold them to fit the narrative of skepticism.

As a writer I know the power of good storytelling, but I also know the importance of telling an accurate and truthful narrative. The editing done on Afflicted crosses that boundary in my opinion.

Imagine if, in my memoir, I quoted my mom in a scene that she wasn’t actually part of or even just twisted her words around. I’d get destroyed by the literary world, I’d probably never again be taken seriously in my writing.

“Listen, any time you’re bringing cameras in the real world and aiming at disempowered people, exploitation is gonna come up.”

– Dan Partland, executive producer, Afflicted and Intervention

Omissions From my Story

For those who want to know exactly what was left out of my story in Afflicted, below I will include a list of things that were filmed but never made the cut. I want to specifically mention the lack of ME/CFS researchers featured in the series, as well as limited references to my medical records. The truth is the film crew spent an entire day at the 2017 Community Symposium on the Molecular Basis of ME/CFS, which was held at Stanford University, where the crew interviewed numerous ME/CFS researchers who I know had a better explanation of the disease than: “We don’t know what it is,” which is a sound bite featured frequently throughout the series. These researchers probably mentioned how it’s a metabolic and inflammatory disease, how it often creates low natural killer cell function and other biological deficiencies. But none of that was mentioned, nor was my diagnosis and treatment of Lyme disease and the MTHFR gene mutation. All of this information was provided to DocShop Productions and here are the most noticeable parts left out of my story:

• Lyme Disease diagnosis and treatment

• PICC IV insertion procedure which I redid for the cameras

• My low NK cell function, low cortisol, MTHFR gene mutation, active cytomegalovirus and EBV tests

• The slew of tests that Dr. Eric Gordon did — blood, hair, saliva, urine, etc.

• Researchers from Stanford who came to draw my blood for a major ME study

• My mom at her job during day and caring for me at night

• Daily IV treatments

• Taking anti-viral med (Valcyte)

• Weekly B12 injections

• Interview with Stanford Geneticist Dr. Ron Davis

• Interviews with several top researchers at the 2017 Community Symposium on the Molecular Basis of ME/CFS

Focus on Psychosomatic

If you’ve watched Afflicted then you know that several of the episodes focus predominantly on psychological issues, often implying that the illnesses seen in the series are created or contributed to by the mind. There’s one sound bite from a doctor who says that studies have shown that trauma can damage the immune system, that’s absolutely true. I think stress and trauma and other mental health factors can contribute to physical illnesses, but they cannot cause them. The car accident I was in didn’t cause ME/CFS or Lyme, but sure, the emotional trauma and stress may have weakened my immune system to the point that viruses took over my body. And then of course there’s the physical injuries, which may have damaged my nervous system. Mine is not a simple illness. It’s complex, but the mental factors are by no means the biggest factors, certainly not big enough to warrant devoting the amount of coverage they received in Afflicted.

The most frustrating part about the series’ focus on mental health is that it was never even mentioned that I’ve tried therapy and antidepressant medications. I’ve done both of those things, many times, and yet I’m still as sick as I am. I hate that when people see how defensive I get about my illness being called psychosomatic they automatically assume it’s because I’m in denial and refuse to try therapy or SSRIs. Trust me, there is nothing I won’t try if there’s even a remote chance that it could make me better. I’ve tried a lot of the things people have recommended — everything from drinking celery juice while sitting in a salt bath to going to weekly therapy sessions and taking anti-anxiety medications. In fact, I still regularly take Ativan because it does help. And I’ll be the first to admit that I have serious memory/cognitive issues, depression, and anxiety, but these are not causes of my illness. I wouldn’t even necessarily call them symptoms of it. They are, however, definitely byproducts of being sick. But here’s the thing, nobody who has watched Afflicted knows any of this because the producers left it all out.

They also chose to omit any mention of the psychological evaluations that were mandatory for all of the main subjects of the series. If nothing else this step should have exempted us from the level of scrutiny we faced on the series about our mental health. And if they still chose to examine it, our well-documented good mental health should have been included in the narrative. Ideally, psychiatrists like Dr. Richard Friedman should never have been interviewed.

But this is the type of focus that is employed on Intervention, the reality show in which people are confronted about their addictions on camera, which at one time was made by the same producers who made Afflicted. But in hindsight I should have seen the focus on mental health coming. That was a big part of Intervention. Past storylines of that show have often focused on how trauma and mental health relate to addiction. That is essentially what the producers tried to do with Afflicted, except it didn’t work. You can’t correlate the same issues that people face with addiction to illnesses like Lyme disease and ME/CFS. You just can’t. The pathology is not at all related.

I consider mental health a very important issue, but Afflicted should never have been about that. People with mental health conditions deserve empathy and care and the treatment they need, just like those of us with chronic physical illnesses deserve those things. The difference, however, lies in the type of care and treatment. You wouldn’t treat a cancer patient with a mental illness protocol and vice versa, so neither should you treat ME/CFS or Lyme as you would a mental illness. Physical illnesses should be treated as physical illnesses and mental illnesses should be treated as mental illnesses.

After the show first aired I talked to the executive producers of Afflicted and they said it was important for them to show both sides of the argument about whether some chronic illnesses are created in the mind. When I asked one of them about this, he sent me this note:

What exactly is going to be effective? Making sick people look bad? “Acknowledging” skepticism doesn’t make people take us more seriously, especially when the evidence of their biological basis – both my abnormal lab results and the broader research – is purposefully excluded. There’s a big difference between acknowledging the skeptical perspective and, say, devoting three entire hour-long episodes to psychobabble sound bites about it, which is precisely what the producers did.

One such episode was devoted to “Identity,” suggesting that those of us with chronic illnesses spend so much time in poor health we become consumed by the lifestyle and don’t know how to live any other way, which is a completely asinine point to make. It’s unfair to categorize people like this because they “become” their illness. If giving all of your surplus energy to try to make yourself better is “becoming” an illness, then sure we “become” it, but if we’re talking about finding some sort of clandestine enjoyment or comfort in living as a sick person because we don’t know how to live any other way, well, that’s one of the most idiotic things I’ve ever heard; that’s not us.

The latter is basically what the producers did and now it seems they’re trying to justify their actions with flawed logic. In fact, one could argue that they gave far more air time to skepticism than the scientific research that is being done on the chronic illnesses profiled in the series.

The Release

Post-production took almost exactly a year, during which time I heard nothing about the progress of the series. I periodically asked a few of the producers about it and they could never tell me anything useful. Apparently, more than a week after it came out, some of them still haven’t seen the series. By some accounts there were no screen tests done prior to the series’ release and it wasn’t until a few weeks ago that I even learned of the date it was coming out.

Nonetheless here we are, once again fighting to legitimize our illnesses, this time after participating in a film that many of us assumed would help accomplish that very thing. Instead, in many ways, it has added more skepticism to the conversation. If making a film with a “compassionate” look at the lives of chronically ill people and the complexities of their illnesses was the filmmakers objective, as they said it was, then they failed miserably. I don’t think they’re bad people, or even necessarily had cruel intentions, but I hope that this is a learning experience for them — you can’t play both sides. You can’t make a reality show that is also an investigative documentary; you can’t say a physical illness is psychosomatic and expect the people with that illness to support your film; you can’t dupe a person’s family into saying he’s a hypochondriac and expect him to just be happy that the film is “raising awareness.” I realize that a creative work can’t be everything to everybody, but it should at least be the thing you said it would be to whom you said it.

Perhaps I should just be happy that my story was told at all and that it’s raising awareness, albeit the wrong kind, but that’s nowhere near good, or even acceptable, enough for me. Not when I see other sick people suffering at the hands of a film that was supposed to do right by us. I’m sad and angry because I’m proud of my part in the series, but I can’t, or rather won’t, recommend it to anyone because I’m afraid people will doubt the legitimacy of my illness, or any other that deserves to be taken seriously.

Oh well, life goes on…

BEFORE YOU GO…

1. Thanks for reading! Several of the other participants in Afflicted have also written blog posts about their experiences. Please check out our group post where you can find links to each person’s individual post. They are truly astonishing to read.

2. Some GOOD NEWS: My memoir, WHEN FORCE MEETS FATE, is now available for preorder on Amazon (Canada, Australia, etc.), B&N, and Booktopia. If you’ve already ordered it or plan to, the book will be published January 2021 and all copies will be delivered then. We’re currently working on a new cover for the book (that’s why there’s no thumbnail on the listing yet). I will be unveiling the cover before its published and I’m also working on the audiobook, which I’m excited about. I’ll have some big announcements in the weeks and months leading up to the release of the book. So stayed tuned!