How We Are Sick: Diagnosis

Maybe I’m dying.

It’s a thought I’ve had a lot throughout my life. As a child I was paranoid and constantly frightened by everyone’s seemingly fragile health. That comes from being the daughter of someone who is chronically ill. My mother was in and out of the hospital, which meant a lot of my time was spent in and out of the hospital waiting rooms. As I got older a lot of the fear of others’ health problems subsided. Everyone but my mother started to seem so sturdy. But the fear for my own body only grew and the expression of it became increasingly melodramatic.

“Maybe I’m dying,” I would pronounce upon the start of a flu. “Maybe I have a brain tumor,” I’d say when a headache had lasted more than a day. My family took it all in stride, calmly promising me I was just fine.

But I wasn’t.

Looking back, I was a sickly child. I was overweight, horribly depressed, and missed a lot of school either because of real illness or anxiety-induced perceived illness. But what was there to say or do about it? I was my mother’s daughter, and if she was really sick, then I must be too.

Faced with being the “sickly one” in so many groups, I turned to literature for emotional nourishment. It’s a familiar narrative for kids outside the norm. Over the years finding sympathetic characters nurtured a part of me I often tried to hide from my peers. My recent upsetting diagnosis led me back to books, comics, tv shows, and video games for this same comfort.

**Spoilers of many comics below and content warning for graphic descriptions and images of medical conditions**

Stitches by David Small W. W. Norton & Company; Reprint edition (September 13, 201
Stitches by David Small

The child in Stitches: A Memoir by David Small evoked a lot of childhood memories for me. The boy is born with sinus and digestive problems, things I too struggled with as a child. In these three panels to the right, Small draws a young David pulling his teddy bear to himself for comfort and falling into slumber after closing heavily lidded eyes. The last panel reads, “Getting sick, that was my language.”

Stitches is filled with heavy lines, blurred panel edges, and silence. This is fitting, given that David loses the ability to speak after surgery on his throat. The reader learns about David through his body language and facial gestures, which Small draws with precision. During his diagnosis David must have x-rays done of his throat (something he endured many times as a child in order to “cure” his sinus issues).

Stitches by David Small W. W. Norton & Company; Reprint edition (September 13, 201
Stitches by David Small

On the left in the top panel we see his knit brow, the look of irritation and frustration and anger clear though his face is in shadow. The next shot is from the x-ray apparatus across the room, the emptiness depicting the daunting isolation of medical tests. And the final panel of the page is a side view of David’s slim frame, his long neck stretched upward, his chest and lowest ribs touching the x-ray panel. Just a young, skinny boy. A sick child.

I got a handle on my absenteeism halfway through high school. I began to recognize that my “feeling bad,” was bouts of depression and worked on getting through the bad days, rather than retreating to my bed. It was hard, and often still is. Depression can be crippling, and anxiety can deceive you.

It was anxiety and bad doctors that hid my illness from me. Growing up, I got used to any and all physicians telling me that I needed to trim down, lose some weight. No matter the ailment, that seemed to be the prescription. Sometimes it seemed to make sense. Why my knee was taking so long to heal after an injury. Why my stomach hurt so often. Others seemed so disconnected from my physical mass. My toothache, for instance. The migraine flashes I began experiencing. But they were the doctors, and I was the patient. Their job to fix, mine to be fixed. Right?

Rachel Masilamani’s NON-PARTUM: The Subject
Rachel Masilamani’s NON-PARTUM: The Subject

Rachel Masilamani’s NON-PARTUM: The Subject portrays this same sentiment so well. Megan Purdy points out in her analysis of “The Subject,” “Rachel’s posture is hunched with worry, holding out the hair that’s always falling out; the doctor’s filling out a chart with no more worry than a furrowed brow. Let us know. Let us know. Let us know. Now Rachel is angry, not just frustrated—when does letting them know translate into actual care?” So much of my life was similar, for so long I wondered the same thing: when does the actual treatment begin? But I never got to the anger. Unlike Rachel, I trusted the doctors of my youth readily, to my own detriment.

So, last year when I starting dropping weight faster than any fad diet promises, was incapable of holding my emotions together for longer than an hour, and was generally exhausted, I knew it was a bad case of the anxiety. A deluge of panic attacks. Probably tied-in with my now dwindling weight. Purdy continues her article about “The Subject” with, “Also, there’s something in how Rachel finally figures out what’s going on with her (Hashimoto’s Thyroidosis, which can cause severe depression, weight gain, and changes to your skin and hair), not through diligent investigation, but by accident, while she’s participating in research studies just to live.” Such was the case for me, too: by accident. I went into the doctor to procure more anxiety medication.

But maybe I was dying.

My shared “bad doctor” experience with Masilamani is not a rare coincidence. Recently Pacific Standard published “Is Medicine’s Gender Bias Killing Young Women?” by Maya Dusenbery, executive director of editorial at Dusenberry describes recent research about the gender disparity in heart disease and heart attack diagnoses. Though “[h]eart disease is the number one killer of both men and women in the United States” doctors often misdiagnose women with anxiety attacks, or accuse them of being too stressed.

Have I faced this same bias over the years? If I was a cisgender male would they have found my disease sooner? The sizeism was so obvious, “lose some weight.” But none of them said, “because you’re a woman.” It’s impossible to know in my case, but for too many others it has led to fatal repercussions. Dusenberry continues, “[w]hen younger women do have heart attacks, though, studies have found that they are about twice as likely to die as their male counterparts—and more than 15,000 women under the age of 55 do every year.”

Rachel Masilamani’s NON-PARTUM: The Subject
Rachel Masilamani’s NON-PARTUM: The Subject

Rachel in “The Subject” is brushed off by doctors just the way Dusenberry describes. In these images above one medical intern points out that it could be an autoimmune problem, something to do with her thyroid, or possibly lupus. The attending doctor replies, “Pssh! If you want to get into all that, be my guest!” And then, to Rachel, and to the audience, “College is pretty hard, isn’t it, sweetie?” How much sooner could Rachel have been diagnosed?

How much sooner would I have been diagnosed, if doctors took their patients seriously?

When the doctors asked how I could have possibly not noticed that one of my lungs had stopped functioning, I just shook my head. Obviously I had a hard time breathing while walking too fast or going up stairs because I was overweight. They shook their heads right back. I’m not nearly as overweight as the doctors of my teenage years led me to believe. And, even if I was, plenty of people much heavier than I breathe just fine. Plenty of people heavier than me are runners. Or at the very least can run for a bus without hyperventilating.

Sick by Gabby Schulz/Ken Dahl
Sick by Gabby Schulz/Ken Dahl (click to enlarge)

The webcomic Sick by Gabby Schulz/Ken Dahl focuses heavily on the beginning of illness and the overwhelming amounts of energy needed just to procure a diagnosis. In these two images to the left Schulz/Dahl draw what it’s like to have to wait in a hospital waiting room in America with no money or insurance. The panel is crowded with text-sound, aggressive words (die, gunlust, cop-porn, crimefuck), and jarring colors, a lot of blood and excrement.  Not only does the wait take far longer than it feels like it should (22 hours in this cartoon)–after all, time moves the slowest it ever will when you’re sitting in a waiting room–but the process is scary, lonely, and unclear. Nothing about it is comforting. No one seems to care that you are suffering.

Schulz/Dahl also imagine what it would be like to be ill and wealthy in the panel below. Here the colors are soft blue and yellow, comforting colors, actually very similar to Masilamani’s blue in her medical panels. As my editor, Claire, pointed out, these soft tones are often the colors of medical scrubs. The rich, sick character calls for an ambulance, an absolute luxury and privilege. Ambulances are expensive in America, and often not covered by insurance, especially if they send a private ambulance or your need was not deemed dire.

Sick by Gabby Schulz/Ken Dahl
Sick by Gabby Schulz/Ken Dahl

I am acutely aware of the pain of having to choose between my health and my wallet. In October of 2013 I was working at a daycare, and developed aggressive pneumonia. I was working full-time, but since I do not have a degree in education, I was not listed as a full-time employee, so I received no healthcare insurance. I was making just above minimum wage and could not afford insurance on my own. My roommate and I took public transit and walked to a clinic while I was running a fever in the low 100s (F) and struggling not to vomit. The doctor saw me for five minutes, after a wait of over an hour, prescribed me antibiotics, and charged me $150, more than I would have made that day at work had I not missed it for my clinic appointment.

We walked to the pharmacy to fill the prescription and it was there that I fainted for the first time in my life. When I came to, the employees of the store were threatening to call an ambulance and I desperately begged them not to. Already I was in debt from the doctor and medication, I couldn’t bear to imagine how much the paramedics would cost me.

It took me a long time to recover from that illness, and it likely did permanent damage to my lungs.

For some people it can take years to find a diagnosis that sticks. I feel very lucky that my new doctors worked so diligently to make sure that was not the case for me. And yet…knowledge is not always power, sometimes I believe ignorance is bliss. At first they thought, maybe cancer. Maybe just a bad ulcer. But my bloodwork came back positive for an autoimmune disease. Ok, maybe Sjögren’s syndrome, a disease that is potentially dangerous, but for many, just aggravating. It explained my constant dry eyes and mouth. But little else.

Story title(s)'Dangerous Habits, part 1: The Beginning of the End' CoverTom Canty ScriptGarth Ennis ArtWill Simpson (pencils), Mark Pennington (inks) ColoursTom Zuiko LettersGaspar EditorStuart Moore Cover dateMay 1991
Hellblazer #41 – Cover: Tom Canty; Script: Garth Ennis; Art: Will Simpson (pencils), Mark Pennington (inks); Colors: Tom Zuiko; Letters: Gaspar

Dusenbery’s “Medicine’s Gender Bias” continues, “When it comes to less acute problems, the effect of such medical gaslighting is harder to quantify….But it can be observed indirectly: In the ever-increasing numbers of women prescribed anti-anxiety meds and anti-depressants. …. In the fact that it takes nearly five years and five doctors, on average, for patients with autoimmune diseases, more than 75 percent of whom are women, to receive a proper diagnosis, and that half report being labeled “chronic complainers” in the early stages of their illness.” On average, it can take five years and five doctors. Five years and five doctors just to find someone who will believe you long enough to find out what’s wrong with you.

In fictional comics, the diagnosis is often swift and sure. There is very little hemming and hawing like there is in the real world. This is partially to do with “The Law of Conservation of Detail” as defined by TvTropes. The idea is that there is a limited amount of time and space in comics/tv/movies/etc to tell a story, so false diagnoses, unless they somehow further the plot, are not going to make the cut. In Issue #41 of Hellblazer, John Constantine’s doctor gets to the root of the problem immediately: terminal lung cancer. Perhaps it is a little more straightforward in his situation, after all, he is almost never seen without a lit cigarette.

Story title(s)'Dangerous Habits, part 1: The Beginning of the End' CoverTom Canty ScriptGarth Ennis ArtWill Simpson (pencils), Mark Pennington (inks) ColoursTom Zuiko LettersGaspar EditorStuart Moore Cover dateMay 1991
Hellblazer #41

But everything is so fast. He coughs up a disgusting amount of blood, something I am now no stranger to, then a bit of his lung, something I am luckily still a stranger to, and heads off to the doctor. He returns for the results shortly after, and the doctor has definite answers for him. Maybe it was just a different time and place, London in the 90s while I’m in Chicago in the now, but the process for me was so segmented and bureaucratic. All of my x-rays, CT scans, biopsies were done at another location by technicians and the write-up of the test, not even the original images, were sent to my doctors. John Constantine gets to see up close and personal the damage smoking has done to his body. I have started drawing out childlike illustrations of what I imagine my lungs look like.

One of the more bizarre physical manifestations of my autoimmune disease is Reynaud’s Phenomenon. The Mayo Clinic says, “Raynaud’s (ray-NOHZ) disease causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress.” This is a gross understatement. What it really feels like to me is similar to when your leg or arm falls asleep. It starts out numb, but also freezing cold, and then internally begins to tingle until it’s excruciating and feels like I’ve lit my hand on fire. This diagnosis helped find my final diagnosis.

Then the rest of my tests came back. My GP is the one who broke the news to me. He is an unfailingly upbeat man who has prescribed me dozens of herbal supplements to fix my energy levels, sleep troubles, skin problems, foot odor, and so much more. He actively prescribes me yoga time (which I am bad at following through with), and believes I should take up meditation. So when he told me that I have Antisynthetase Syndrome, I didn’t know it was terrible news. Even when he described the polymyositis it had caused, or the interstitial lung disease I now had, I wasn’t sure I was being told something horrible.

Throat: Coping is Coping - Volume 1 by Ben Mitchell Publisher: CreateSpace Independent Publishing Platform (November 25, 2012)
Throat: Coping is Coping – Volume 1 by Ben Mitchell

Throat by Ben Mitchell is about a, possibly unintentionally, despicable man named Lyman Durman who discovers he has throat cancer while experiencing some extreme tonsil-based discomfort. His doctor is awful. While the diagnosis is as swift as Constantine’s, the doctor has absolutely no bedside manner. He’s crass, unprofessional, and rude. While this may seem over-the-top and entirely fictional, it really isn’t. A lot of people struggle not only with doctors who don’t take their symptoms seriously, but also physicians who do not know how to adequately communicate results to their patients.

Mitchell draws a doctor who is entirely unsympathetic to Lyman’s plight. When he looks into the patient’s throat he says “Yeah, that’s definitely not right at all.” Not exactly comforting words to hear from anyone, let alone a medical professional.

Schulz/Dahl hits the nail on the head again in this panel:

Sick by Gabby Schulz/Ken Dahl
Sick by Gabby Schulz/Ken Dahl

In the imagined situation of the patient without insurance or money going to the hospital, the doctor reacts by handing him a box of “Xtra Strength Debt” and saying “Here, take this. And come back when you’ve got a real problem and a real job.” Doctors are supposed to help without judgement. Yet the number of times I’ve left an office angry because of a doctor’s clear personal bias against me is astounding.

cantbreathe by Al Rosenberg
cantbreathe by Al Rosenberg

Let me break my situation down for you in a way my doctor did not. Not much is known about my autoimmune disease, except its associations with other diseases and the antibody marker for it, anti-Jo1. Antisynthetase Syndrome is incredibly rare. One to ten people in every million have it. For comparison, according to the Lupus Foundation of America, approximately 1.5 million people in the U.S. have lupus. Whereas approximately 318 to 3,180 people in the U.S. have Antisynthetase Syndrome. I felt very alone.

The way I wish my illnesses had been explained to me: Polymyositis (PM) and interstitial lung disease (ILD) are more common, but scary. PM causes muscle weakness, making things like climbing stairs and dressing yourself difficult. ILD causes irreversible scarring of your lungs, eventually hampering their ability to successfully participate in the oxygenation process.

Just that. Science. No frills. No football metaphors about how we are going to tackle this head-on. Just clear descriptions of what is wrong with me and how it is generally treated. Like in the comics. Constantine’s doctor gives him a terminal diagnosis this way:

Hellblazer #41 - Cover: Tom Canty; Script: Garth Ennis; Art: Will Simpson (pencils), Mark Pennington (inks); Colors: Tom Zuiko; Letters: Gaspar
Hellblazer #41

I wish I could have had these three bottom panels that Constantine gets to experience. He is shocked and has a moment of silence to contemplate this news. Doctors give characters in tv shows, movies, and comics a moment to let the news sink in. Doctors in real life have other patients waiting to be told different news. They talk straight through all of the things you should now know about your situation, ask if you have any questions and then rush you on your way. Maybe this isn’t true everywhere. Maybe somewhere there are doctors who really say, this is serious, take your time, I’ll let you have your moment of silence.

skullungs by Al Rosenberg
skullungs by Al Rosenberg

Once again, you’ll notice this cool blue color associated with medicine, this time in the Hellblazer panels. Is it clinical? Sad? It still seems calming to me.

While there are these fictional swift diagnoses in comics, there is also often either no diagnosis, just horrible mystery fictional illness, or the narrative begins after what the reader is to assume was the diagnostic portion of the tale. This seems particularly true in comic’s sister medium video games.

Barring games that are based around the medical profession, most narratives begin already on the quest to find a cure. Like in Shadow of the Colossus, where your character is already on his journey to cure his love. Or there is only one disease in all the land, so it’s obvious which one you are facing. Like in Nier, where a father goes on an epic quest to save his daughter from the only illness. Or, better yet, a notice pops up to tell you what has infected your character and where you can find the cure. Like in most Massively Multiplayer Online games.

The “quest” is for a cure. Are diagnostics too boring to be a game? In real life it takes up so much time and energy that it seems strange to be left out of so many narratives.

The adventure part of fictional video game illnesses is rarely experienced by the individual with the illness. The Quest for a Cure is almost always done by the healthy hero. If games focused more on the diagnosis as part of the quest they would have to focus more on the individuals with the illness. Diagnosis is so bodily, so involved with the patient. But in games where the player’s character can get sick, discovering the source of the illness/getting diagnosed is often synonymous with a cure.

To me being diagnosed has been life-altering, so, by necessity, very interesting. This panel in Masilamani’s “The Subject” felt true to my experience:

Rachel Masilamani’s NON-PARTUM: The Subject
Rachel Masilamani’s NON-PARTUM: The Subject

Rachel is in bed, reading about her condition. She looks tired, is possibly falling asleep, or already asleep, still holding The Big Book of Thyroid Disorders. An excerpt from the book includes, “As with other autoimmune diseases it is unclear what causes Hashimoto’s Disease and there is no cure.” Since my first few doctor’s appointments I have found myself in this same position. There’s not much information out there about Antisynthetase Syndrome, but I’ve read everything I can find with tired eyes.

I have been on a quest for a diagnosis. There is no cure. I am chronically, and potentially terminally, ill. Accepting a lifelong diagnosis is hard. I’ve been lucky to have a great support system, have found doctors who will listen to me (for the most part), and have the joy of reading these comics.

Al Rosenberg

Al Rosenberg

Gay weirdo. Talk to her about tiny games, big books, trash, and all things illness.

13 thoughts on “How We Are Sick: Diagnosis

  1. Reading this very late – I just saw a tweet about it and I suppose it was the perfect timing for me. Not to get into too much detail, but I’ve had a similar experience. Years of not getting health care because I couldn’t afford it, finally getting health insurance only for my doctor to tell me it was because of my weight gain until she found out I was bi and kept insisting it HAD to be an STD. 2 years and 3 doctors later, I finally was diagnosed with lymphoma. As a Daredevil fan, I couldn’t help but think about the reveal Foggy went through with his cancer – how sad the doctor was, how there was this moment for tears and to think over the diagnoses- when my doctor asked me to take my shirt off once more to grab a lump on my back and tell me it was a tumor and I would need surgery and they’d call me before walking off, leaving the door open while yelling back to make sure I go left after leaving the office to find the exit. There is something heartbreaking but gives some type of companionship to see other women going through the similar, albeit horrible, experiences and making peace with it. Reading this was just what I needed on one of those days when you can’t really do much but think about much all of it sucks. Great article and very awesome of you to put your story out there!

    1. Thea, thank you so much for sharing your story with me. The medical system is lacking in so many ways. I find myself devastated by all of the stories that have been shared with me after I wrote this.
      I hope you find those moments of quiet grief and self-reflection, even though they’re never offered to us.

  2. Wow, everyone thinks they have life issues with because a boyfriend breaks up with them, or they lost a friend to a fight. But here you are with an actual illness, which I am incredibly sorry for. You have opened my eyes to see other’s perspective. To you I hope nothing, but for great things to come to you.

    1. That’s sweet, thank you.

      Those are real, hard problems too though!
      I feel sad when a woman breaks up with me, and I’m heartbroken when my friends and I are fighting. Those problems don’t cease to be real and painful.

      If anything being sick has granted me more empathy for others’ problems, no matter how “small.”

  3. Al, thank you so much for sharing. This is a beautiful piece. Your experiences echo those of too many people I hold dear. Our medical system is riddled with problems and prejudices, and you deserve so much better. We all do. May your voice join that of many others, and hopefully we’ll have a cure for this broken system, someday.

  4. All I can say is that I am so sorry and that you are an amazing, awesome, fantastical writer!

  5. Christ. I’ve been dealing with a mystery illness of my own since October (swollen glands in throat, messed up sinuses, fatigue) and I’ve had something similar with my doctor saying that the back of my throat looked grey and bad. I have been worrying for months and gotten nearly monthly blood tests.

    I’m so sorry it’s taken you so long to get diagnosed, I’m sorry that you don’t know if you can get better.

  6. Al, this is beautiful and raw and amazing. Thank you for sharing this with us.

    Your points about how women are (mis)diagnosed or their symptoms just written off was very eye opening — yet so obvious. It made me think of the invention of the vibrator as a cure for “female hysteria.” Have women ever been taken seriously by a doctor, save for, perhaps, when they have babies?

    1. Wendy, thank you.
      I know. The article I cite really hit me hard. For so many years I’ve been complaining about absolutely horrible doctor’s appointments, and being brushed off. Now I wonder why I’ve examined gender disparity in everything but my own health experiences.

  7. Incredible and moving. Thank you for writing this. The only small, brief (reproductive) medical mystery I’ve had so far left such a bad taste in my mouth and made me feel so insecure and lonely. I couldn’t believe it when the woman at the desk, at a place that considers itself “radical,” said with a laugh after my appointment, “You’ve got us all talking, they’re back there throwing around words I’ve never heard!” I feigned a weak smile because I didn’t know how or care to explain why that was terrible to say to me in the open waiting room or at all. What I experienced was tiny, but they made it feel bigger than necessary. I can’t imagine what you and so many have to go through when facing those feelings, unresolved, long-term, and time after time after time. It’s great that you’ve written this, personal stories like this are what make the numbers come to life. <3 <3 <3

    1. Ambria, thank you so much for sharing your story with me. I’m so sorry that happened to you. It’s all too common to find unprofessional doctors/doctors’ offices.

  8. My god, this is an incredibly honest and affecting piece, Al. Thank you for writing it.

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