The Aftermath of Afflicted

The Aftermath of Afflicted

The last thing the world needs right now is a post by another angry person, especially when that person is straight, white, and male. I’m not one to ignore the privilege I’ve had in this life, but nor am I one to pretend like my current situation is without struggle, the likes of which no person should face. If you’re wondering what I’m talking about, please take a look at some of the older posts on this blog.

Now, if you’re still reading this, let me promise one thing: As angry as I may seem in the next several paragraphs, I vow — both for your sake and my sanity — to finish this post on a positive note. And if you’re one of the lovely people who have been reading this blog for months or even years, I promise that, barring some unforeseen event, this will be my final post specifically about Afflicted, the Netflix series that documented parts of my life.

But for now, I’m just going to vent, OK? Thanks!

This is probably one of the most frustrating times in my life. For years I’ve been experiencing a baseline level of anger — watching a sea full of able bodied people live their lives to the fullest and post about it on social media. At times it has felt like a type of resentful yet unavoidable fear of missing out on life (I’m 30, can I say FOMO?), which has driven me to some pretty dark places. But that was before Afflicted came out and throngs of ableists, other types of ignorant people, and even just sanctimonious folks who say they are well informed, came out of the woodwork to chime in on my life.

Reactions to Afflicted

What I’ve been experiencing lately, however, is an entirely different level of frustration, one stemmed from withstanding a barrage of people overstepping boundaries, like the tweet from a man threatening to come into my room with a machine gun because he thinks I’m faking my illness and pointing a gun at me would expose some sort of facade.

But come on, I used to lift three times my body weight; I used to flip tracker tires I could literally crawl into. I’m not faking my illness, nor did it originate in my mind. The fact that I even have to say these things, after what I’ve been through, is just ridiculous and proves that some people have a truly disturbing lack of empathy and understanding of suffering. It’s easy to say that people who make these kinds of comments are just projecting their unhappiness, and that may be partially true, but I doubt they know real unhappiness, the kind that only comes from having everything you hold sacred taken from you. Not even I know that level of unhappiness, though I’ve gotten pretty close, and hey, I’ve managed to not threaten to kill anyone. Where’s my trophy? Hah!

I also received a similarly threatening message from a man who cryptically said that I needed to be forced to stand up because one of his relatives wouldn’t get out of bed until someone went in his room with an axe and purposefully sharpened the blade in front of him.

These messages are troubling, but even seemingly innocuous messages get under my skin, probably because I don’t know the people who send them. For all I know they too want to come into my room with an AK-47, but aren’t saying it. Though I can’t imagine someone making me chug a glass of celery juice at gunpoint just because they think it’ll make me walk again. Nevertheless it feels impossible to know what anyone’s motives are on the Internet.

And as suspicious as it is that I get dozens of people everyday telling me to read Medical Medium, these are not the messages that truly unnerve me.

No, besides the death threats, I’m talking about the audacious woman who messaged me asking what I would do if my family died and there was nobody left to take care of me, or the anonymous comment left on this blog telling me that I’m a burden on my family and that I should get a job (I guess writing for The New York Times doesn’t count as a job). Then there’s the guy who said I’m lazy, not sick (again, I didn’t know writing for The New York Times was considered lazy).

I’m also talking about the Reddit thread littered with pompous doctors who, when I interjected to correct them about the details of my situation, said I was violating Reddit’s rules. Apparently you’re not supposed to talk about personal health/medical problems on the website, but you know what, Reddit can kiss my ass. If people are talking about my life in any public space I’ll be damned if I’m not going to have my voice heard. The ignorance of these doctors is mind blowing. One of them actually thought I was faking my illness because I can write so well but can’t speak. Uh… Hey Doc, I hate to break it to you, but it’s entirely possible to communicate by typing, even though my speech is impaired. They should have taught you that in medical school! Or you know, even high school.

This ignorance just shows that the part of my brain that transfers thoughts to my finger tips is working just fine. The reason I can’t speak is most likely unrelated. It reminds me of a man I met with ALS, he was stuck in a wheelchair and couldn’t voluntarily move except for his eyes. That’s how he was able to communicate. He used a computer program that responded to his eye movements and was able to compose these thoughtful, articulate letters to people. It was so impressive, but I wonder what the doctor from Reddit would say about my condition compared to this man’s. I bet he would say that I don’t have ALS, which is true, I don’t. But my point is not to compare illnesses, it’s that there’s an idiot doctor out there somewhere who is seeing patients and he thinks that well-crafted nonverbal communication is impossible without the ability to speak and anyone who proves otherwise (me) is a hypochondriac. Fuck that guy!

Honestly, I don’t mind debating most topics, but anyone who wants to have a “logical” debate about the legitimacy of my illness can go bang there head on a wall, especially any medical or psychology professional. My illness is physical. There’s nothing to debate!

The paradox of this situation is that the people who argue that my illness is all in my head are so maddening that they are jeopardizing the mental soundness of which they say I never had in the first place. And in the process they are further stigmatizing mental illness. By automatically blaming mysterious physical illnesses on poor mental health, these ignorant people manage to stigmatize two separate types of illnesses at the same time. I didn’t even know that was possible until I found myself at the center of the debate.

As far as I’m concerned, the ignorant reactions I’ve been getting are a direct result of the producers of Afflicted choosing to make their film scandalous reality TV masked as a legitimate documentary. They could have made an informative, investigative, scientific film that created awareness and championed its subjects. Instead they made it a giant piece of click bait. The plight of the subjects in the film and the science behind our illnesses was enough to enthrall viewers, it really was, but maybe the science part was just too complex for the producers to grasp. Still, I don’t know, maybe hire someone who can grasp it? They’re plenty of scientist out there. Nonetheless it seems like the bosses at DocShop Productions and Netflix weren’t interested in helping sick people find answers, they were interested in fetishizing us to reality TV fans.

Lately I’ve been overwhelmed by all of this. I’m not used to this much attention, good or bad. I’ve really had to search inside myself for what this new phase of my life means and how I’m going to get myself through it while protecting my sanity. I feel like I have to respond to every message I receive and rebuke every slight against me, but I also have to remind myself that none of this could have been possible a few years ago. In 2015 I was too sick to even eat, now I’m well enough to actually engage with trolls on my favorite social network. Except I know that isn’t how I should be using my energy. After all the crap I’ve been through I feel like I should have this higher consciousness that prevents me from wasting what little health I have on stupid stuff like debating random strangers about the legitimacy of my illness. As I recently mentioned on Twitter, all of the flack from Afflicted has really shattered my heart into pieces and taken bits of my soul, but it has also made me grateful to still have those pieces of myself. Before all this happened it felt like I had nothing left — no pieces of myself — now atleast I have the ability to decide what pieces I share with the world and which I keep from people who don’t deserve them.

This is really the first time in the eight years I’ve had ME/CFS that I’ve regularly had to defend myself from trolls. Before I became bedridden I still faced naysayers, but at least then I had the option of pretending to be healthy. I didn’t look sick so I had a choice of whether to tell people about my illness, which I usually didn’t do because I would get a skeptical reaction. Now, however, I don’t have that choice. I no longer have the option of pretending to be healthy. I’m bedridden with a semi-permanent IV in my arm, there’s no pretending that’s the existence of a healthy person.

Inconsistencies and Omissions

My last blog post covered the main issues I have with Afflicted, but I left out a lot of the small stuff.

For instance, my story was shown with significant parts out of sequence. The final scene in the seventh episode of Afflicted, which shows me going outside to look at the stars at night. That event actually happened before many of my previous parts in the series. Specifically, that moment was filmed prior to the doctor coming to me (seen in the first two episodes), not at the very end of my story’s timeline.

One of the most blatant inaccuracies, in my opinion, has to do with the scene when I tried to get out of bed and stand up. The production team edited the footage to make it look like I was unsuccessful in my attempt to get out of bed. The edited footage shows me sitting on the edge of the bed, then I gradually lower my feet to the ground. Next they cut to me looking exhausted, in a lot of pain, and getting short of breath. All of that really happened, obviously. But what the producers left out was me actually standing up. The viewer just sees me fall back down to the mattress. In reality, the reason I fell down to the mattress was because I had just stood up.

What really happened: After sitting on the edge of my bed and slowly getting my feet to the ground, I supported most of my body with my arms, pushing off from the mattress. Then I did it — I stood completely upright and unassisted for the first time in two years and the cameras were there to capture the milestone. In previous months I stood up with the help of a walker, but none of those prior attempts were unassisted or as complete and triumphant as the moment on camera.

After I stood up I was excited. But I had to wait a year to find out how the moment would fit in with the rest of the film. Little did I know that it wouldn’t fit in at all. The producers cut out my most memorable moment.

But what irks me the most is that the production wasted so much energy from me and my family. I could have used my time and energy to research new treatments or doctors or even write my memoir. Instead I was accommodating a crew of strangers as they filmed me doing things I wouldn’t normally do and they didn’t even use the footage.

I just wish they wouldn’t have altered real moments, like when I stood up. I guess I know why they did — it builds suspense for when I finally go outside in my wheelchair later in the show. But that too is flawed storytelling because it was out of sequence. In reality, I went outside before, not after, I stood up.

The stories told in Afflicted were not pure, they were manipulated, perhaps even fictionalized in some parts. But this is just how the producers chose to do things and the tactics they employed during filming were even more dubious.

At one point a producer ambushed me with a camera and asked why I didn’t want to see my friend who was waiting in the other room. I was legitimately confused by her comment. While I wasn’t feeling well at the time and needed to pace my visit with my friend, I had never said that I didn’t want to see him. In fact, I was actually really looking forward to seeing him and had been waiting for the producers to finish interviewing him so I could do just that. After all, he had driven two hours and I wasn’t going to let him leave without spending time together.

Then it dawned on me that the producer was fishing for drama. She appeared to want to create a scandalous event in my life where there wasn’t one. I have to admit this was one of the few times not being able to speak was actually a good thing. If I could have used my voice in that moment, there’s no doubt in my mind that I would have told the producer to get out of my room and stop being so manipulative. Now that was probably exactly what she wanted me to do, so then later the editors could use the footage of me getting upset to make it seem like I was hostile about seeing my friend. I remember I thought about trying to type a few four-letter words on my phone to get my anger across to the producer, but wisely I took a couple deep breaths and motioned for my friend to come in. We spent the rest of the day hanging out together. It was a really memorable day, but I guess it wasn’t memorable enough for the producers — none of the footage made it into the series.

This wasn’t the only time the film crew made me frustrated…

The cinematographer I wrote about in my last post, the one who was obsessed with my inflatable bathtub, also started moving stuff around my room. He was staging my belongings in places around the room in order to get better shots. Then he started giving me verbal directions (a filmmaker friend told me this is fairly normal, even on documentaries, but to me it just seems fake). It feels like fictionalizing a true story and I’m not an actor, so why was I being treated like one?

“Turn your head towards the window,” the cinematographer said. But I wouldn’t do it. I wasn’t getting paid, so I wasn’t going to be treated like someone, a subordinate, who could be ordered around.

“Run the water over your face,” he said. That was a tough one because I was going to run the water over my face anyway. Hah! If he had just kept his mouth shut he probably would have gotten a better shot. Instead I gave him an unsavory look, waited several minutes until he seemed to forget about his command, then I finally washed my face. I’m stubborn, sure, but I also believe in being treated fairly, which didn’t happen while making Afflicted.

Ironically, shortly after I refused to follow the cinematographer’s directions, a producer approached me and told me to “stop playing for the camera,” suggesting that I wasn’t being natural enough on camera. Damn, I guess I need to go back to acting school.

Still, I pressed on with my involvement in the film because I had been promised that it would be a legitimate documentary and would help raise awareness for ME/CFS and Lyme disease.

I even did things like naively consent to have the cinematographer put a camera on my chest while I was trying to eat and allow a digital camera in my room to do a time lapse of me sleeping. Every minute, like clockwork, the camera’s shutter would open and close. All. Night. Every. Minute. I finally had my mom take the camera out of my room at five in the morning so I could sleep. Again, none of that footage was used. But in hindsight, that was only a small piece of a much bigger problem with the production.

I think the biggest issue about Afflicted is not that it stigmatizes MECFS and mental health issues, it’s that the production team did so but somehow thinks they also did a good deed.

I’ve talked to filmmakers and their subjects and I’ve been part of other films (actual documentaries), the producers of those projects always took care of their subjects. The people in Afflicted were not taken care of and we were never introduced to each other, we found each other online after the release and then we started speaking out against the poor treatment we received.

Since then I’ve had time to reflect on the production and its aftermath. I had high hopes for the series and the advocacy it could potentially bring. While it has obviously been a letdown, there are certain things I’m grateful for. I’m grateful for the people who, despite being fed the inaccurate and misleading information in Afflicted, have searched for the truth and found the other side of the story. I’m also grateful that I have some very special moments captured on film.

Still, I can’t shake the question: Would I do it again if I knew this would be the outcome. I’ve thought about this a lot, which I realize is pretty pointless considering I can’t go back in time, but ultimately I’ve concluded that I would do it again. I’d go through the arduous casting; I’d invite a group of strangers with cameras into my house for a few weeks; I’d spend two hundred hours essentially working without pay. Why? Because if I hadn’t gone through it someone else with my disease probably would have, and honestly, they might not have fared as well. I shudder to think about someone else with ME/CFS or Lyme being portrayed worse than me and, in turn, being used to marginalize a group of sick people. That’s just not right.

BEFORE YOU GO…

1. Thanks for reading!

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!

Netflix and Hill: The True Story Behind “Afflicted”

Netflix and Hill: The True Story Behind “Afflicted”

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!