by Yaika Sabat
I didn’t expect to get what felt like a punch in the stomach during an anniversary date. For our third anniversary, my now-husband and I were sitting in the theater watching Insidious: The Red Door, seeing what the Lambert family and Lipstick Demon were getting up to this time around. Then, the doctor scene happened. If you haven’t seen the movie, I might spoil some things for you, so fair warning.
There’s a scene where Josh Lambert (played by Scream King Patrick Wilson) goes to the doctor. He’s been dealing with a brain fog that makes life hard to manage. His mysterious symptoms have led to a divorce from his wife and strained relationships with his children. He doesn’t know that he and his son Dalton were hypnotized to stop them from astral projecting and luring the dangers that perpetually seek a way out of The Further. He also doesn’t know that his suppressed memories are trying to fight their way back. All he knows is he’s struggling. An argument with Dalton and the pain of his fractured relationships finally drives him to seek medical help. He gets a fittingly creepy MRI and then it’s time for the results.
There he is, sitting in the examination room, hoping this doctor will solve the puzzle and help him get his life back. Instead, the doctor tells him, “There’s nothing physically wrong with you. No growths or spots on the brain. Nothing to be concerned about.” Josh, fully aware that there is, indeed, something to be concerned about, sits there, silent. Seemingly confused by this reaction, the doctor continues, “That’s good news, Mr. Lambert.” Josh can only say, “I guess I was just hoping for something real. Something that could explain this…fog.” The moment I heard that sentence, I gasped and sunk into the back of my seat. More accurately, I felt like someone shoved me into my seat. I felt a lump in my throat.
I know all too well that “nothing wrong” is not always good news. It’s not good news for the patients with no further insight into what is disrupting their life, causing them pain, and wearing them out. It’s not good news for the person who knows they’re going to be doubted and dismissed. It’s not good news for the person who just needs to know what they can actually do to make it stop. They leave feeling no better and only more certain that they don’t know what’s wrong. Chronic illness feels to me a lot like living out a horror movie. You exist in a body haunted by an invisible source. No one can see it, no one can feel it, and so you struggle on your own.
Horror movies have always been a part of my life. As a child, every single one seemed to give me nightmares. Still, I couldn’t help but watch them. As I got older, the nightmares lessened but my love of horror movies grew and grew.
Without knowing it, chronic illness has always been a part of my life, too. As I look back, my life mirrored that of so many horror movie main characters. Whether it’s Josh Lambert feeling lost because he doesn’t understand his brain fog and daily confusion, Kathy Lutz becoming increasingly terrified by strange occurrences and a husband transforming in front of her eyes, or Chris MacNeil desperately seeking any help for her daughter. I can see the structure of so many of those movies and how they and I align.
The movie starts. You meet the protagonists and see their day-to-day life. Maybe they just moved to a new home. Maybe they’re starting over, or excited because they got it for a steal – maybe they know why it’s a steal or don’t think to ask. Everything is promising. Until it’s not. Small things happen at first like items mysteriously being moved to a new spot. They hear scratching in the walls. Their pets respond badly to the home, barking or refusing to enter. The protagonists ignore it, find some rational explanation, or laugh it off as an active imagination.
I’ve always had some kind of symptom, but most of my life, they were either spread out or not obviously connected enough to make it all seem like a lot of random, unfortunate afflictions. A moody, sensitive digestive system. Ankles that take great joy in rolling on a whim. Lower back pain of someone decades older (not that pain cares about age). An almost pathological clumsiness. My friends jokingly tell me that I need to get someone to clear whatever curse I’ve got. This is just my life. It was frustrating, but, sometimes, life is frustrating. The day-to-day goes on. I often wake up fatigued and in pain. All my energy goes into functioning. People tell me more than once that I’m a hypochondriac or jumping to the worst conclusions. I let them convince me of that.
The movie starts to build and the strange occurrences get worse. People’s personalities start to change. It gets tense and angry. Objects aren’t found in strange places, they fly across the room. Instead of just scratching, now they hear whispers or the house blatantly tells them to get out. They can’t just write it off as their imagination or lack of sleep anymore - they’re properly afraid. They try to keep it together, partially because they’re not sure what to do. If they start to share their experiences, they’re told it’s not possible or there must be a logical reason.
In my mid-thirties, I move across the country and my symptoms ramp up. I wake up and try to stand straight but the pain that greets me makes me scream and fold over. I try to reach a heating pad, or if I’m lucky and my partner is home, he brings me one when he hears my cries. I get up too quickly and have to hold myself up with a wall when my head goes so light I wonder if it’s floated away. I get day or days-long migraines that feel like a knife in my eye. I am so bone-tired that sometimes I wake up and cry because I’m awake. I stroll downtown for half an hour and pay the cost for a week.
But, life has to go on. I stumble my way through getting ready, prop myself up in my office chair or the recliner, surrounded by heating pads, and get to work. I tell myself to be grateful that at least I can work from home. But the symptoms become too intense to ignore and I’m not sure what to do next.
Our now terrified protagonists bring in experts to examine the phenomena and investigate potential causes. Maybe it’s the pipes, a draft, a prank, an illness, or the homeowner’s mind playing games with them. They visit doctors and we watch along as, inevitably, no physical causes are found. We then watch along as they seek out psychiatric help, knowing that they’re not imagining it — there is some sinister force responsible. We watch our protagonists do the logical, sensible things and get no help. Most of us remember the medical testing scenes in The Exorcist not only because of how uncomfortable the tests looked, but because we have to watch Chris sit there and be condescended to by doctors, when we know something nightmarish is already happening and only going to get worse.
I go to so many doctors over the years that I lose count, but I’m a fat, brown woman with a diagnosed anxiety disorder. I’m an almost laughably perfect example of someone they can dismiss. I’m too nice, try to find humor even if I’m sitting in a pit, and I’m not expressive enough of my pain. For two years of college, I got progressively more sick, going to the ER more than once during the year, and eventually I can only eat specific foods in small quantities. I end up being hospitalized for a week when another attack of pain kicks in. The doctors only admit me because my mother, who can be impressively intimidating, tells them she’s simply not taking me home until they fix the problem. It’s a week of IV fluids and nutrition, little sleep, and lots of tests. And yet, they almost send me home and only find the cause of my illness when my wonderful nurse insists they run a specific test. The doctor tells my mom, not me, that If I had gone home, I would have faced sepsis in a week.
Our terrified protagonists shift to other experts, those of the paranormal kind. They decide to fight the force on its turf. The spirits, forces, or other invisible causes are not happy, to put it lightly. They’re not subtle in the rage they throw at our leads. What was once noises and objects being moved are now physical attacks. Sometimes the invisible presence shows itself in all its horrifying glory. Nothing is hiding anymore. Maybe they learn that it’s not attached to the house. It’s attached to them. This is the point where it takes all the protagonist’s strength to keep going because it would be so easy to give up.
After dealing with doctors for decades who either dismissed my concerns or couldn’t find the root cause, I decided to practice the research skills I learned while getting my degrees. I determine that I’ll go into the next appointment prepared. I create a list of my symptoms, research possible causes, and note various illnesses it could be - the ones that seem unlikely and those that ring true. The worsening of my symptoms makes them easier to pinpoint. My invisible, sinister force seems like it could be one or two possibilities. It’s all so much work that I wonder if it’s worth the effort. But I’m used to nothing being that easy, so I’m not giving up.
The movie’s climactic moment approaches. At this point, either our heroes escape relatively unscathed, there’s a large price to pay for survival, or the forces working against them are triumphant. Sometimes, right on the edge of losing, our heroes rally and whether it be through a spiritual practice, the power of love, or just their stubbornness, they cast out the forces that have been haunting them. Just picture the end of The Conjuring, when the Warrens walk out of the house and Carolyn follows them, the sunlight lighting her once haunted features. The family is reunited, their mother is returned to her loving state.
I share that I’m wondering if my symptoms could have a specific cause. I make sure not to be too certain in my theory because I know it makes it more likely that doctors will shuffle me into the pile of patients they think spend too much time on the internet. My doctor asks me some questions, does a physical examination, and thinks I might be right. I hear her say, “you might actually have it,” and, for a moment, I’m too stunned to speak. After several appointments, hours of research, various tests, and lifetimes on the phone with doctors, it turns out I have Hypermobile Ehlers-Danlos syndrome, and a host of other, likely related, chronic issues. I have a diagnosis. Everything starts to click into place.
Sometimes, it seems like our protagonists will prevail, but ultimately whatever evil they face is stronger. They stay haunted, they’re never believed, they’re stuck. We leave that film with little hope. Or, they prevail, but not without losing someone. George and Kathy Lutz flee with their kids and their dog (I clap extra when he goes and gets the dog), but they lose all their belongings and their home. Regan is exorcised, but only because Father Karras sacrifices himself.
I got lucky. It was exhausting and overly complicated to get an explanation. I’m often furious that if people had paid more attention to my words and symptoms they could have figured out what was wrong years ago. I wouldn’t have spent so much time wondering what was wrong with me or if I was just imagining things. I mourn the ways my life could have been easier, less painful. I mourn that things will never be easy, the idea of an uncomplicated life. Still, I got a diagnosis and am able to start implementing treatments.
The thing is, I know so many people who don’t have that. Who are still piecing together a variety of symptoms but are no closer to an answer. Who feel “crazy” even though we know what they’re dealing with is real.
Also, my horror – my haunting – isn’t done. I still have invisible, chronic illnesses that impact my life in so many ways. I still have to plan around how activities, weather, or a million other little things might affect me. I still don’t know when I’ll have a flare. I still look fine on the outside, so people don’t always get it. There will be people who think it’s nonsense, that it’s made up, that I’m using it all as an excuse. Chronic means it’s sticking around. It might have moments when it’s hiding in my walls, but it’s always there. I know the ghosts that live in my joints, my belly, my brain. They still like to make my life harder, but we understand each other a little better. My ghosts and I are getting better at some kind of compromise. I’m learning to live my life as a walking haunted house.
About the Author
Yaika Sabat is librarian, writer, and lifelong horror fan. Her love affair with horror began with Scary Stories to Tell in the Dark, urban legends, the initial sightings of the chupacabra, and scary movies she was entirely too young to watch. As a nonfiction writer, her interests include the horror genre, film, folklore, and mythology. When she’s not writing, you’ll usually find her enjoying the company of her husband and cats.