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.
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. Since Afflicted came out and pretty much destroyed any hopes I had for MECFS advocacy, I’ve been looking for ways to make up for it, ways to right that wrong… and now I have a crazy idea that might help raise awareness for ME/CFS and other chronic illnesses. It’s a long story, but I’ll just say that it involves a $2,000 coffee mug and one of the most popular podcasts in the world.
3. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would LOVE to see you rocking some Ask About ME apparel. Send me a photo!