Health

My Chronic Pain Took Almost a Decade to Diagnose

The first time my body rages against itself, it’s 2009. I’m just out of college, and I have awoken
to what feels like an explosion inside my skull. Oh god, it’s my eye, I realize. My little studio’s two windows become my enemies, pouring intense white light into the room. The light is a
dagger. I can’t open my eyes, I can’t think, I can’t do anything but scream, literally.

I hide in the bathroom, where it’s cool and dark and I’m all alone, but the light from the main room streams beneath the door, which is enough to send me into a panic. I get into the bathtub and pull the curtain to further block the light. I try to breathe through and into the pain, but this isn’t just any pain, this is skull-exploding torture.

Have I finally been turned into a vampire? I wonder, trying to find a joke in my desperation. Is this it? As someone who’d written a college thesis on vampires and sexuality, that would be ironic. But this? This isn’t my body turning from human to eternal creature. This is napalm in my eye socket.

I have about $ 76 in my bank account. Going to a doctor or an emergency room would use money I don’t have. No parental support, and no more college insurance. Uber and Lyft don’t exist yet, so I can’t take a quick and cheap ride anywhere. I end up getting a pricey yellow cab ($ 25) to the doctor who prescribed me my contact lenses a few months ago. I wrap a black sweater around my head and sink into the back seat. My heart is pounding.

My eyes look like two red balloons. One is much more swollen than the other. Somewhere in there is a pupil, maybe some white of the eye. Somewhere in there is the girl I was before.

“You’ve just got contact irritation, honey,” the doctor says. “That’s all.” He gives me some steroidal drops, which help immediately (but not totally). “Just don’t wear the lenses for a few days.”

Sitting in that chair, looking up at this friendly doctor in his shoddy glasses shop decorated in pictures of moody, angular models wearing Prada frames, I just shake my head. It can’t be just contact irritation—the deep throb is too intense, the light too painful. And my instincts are leading me. I am a lighthouse to myself.

I don’t know it yet, but this is my induction into the society of the chronically ill and chronically silenced. This is my first taste of what it’s like to have my intuition erased because someone has a degree in medicine and I don’t. To be furious with my own body and with the way others look past it.

I stop wearing the contacts, yet every so often my eyes seem to blow up. The light and I are no longer friends. I become a creature of the night, which may fit my poetry-writing goth-girl persona, but I never wanted it to be literal. Literal darkness is different from artistic darkness. In the dark, creatures go blind. They don’t need their eyesight, so they lose it. I don’t want to learn how to live in the dark, not like this.

I Google all the reasons my eyes might be doing this to me. None of the reasons look very good (Oh god, I’m dying of brain cancer becomes a regular thought), and a lot have to do with autoimmune illnesses, which of course I don’t have. Right?

Finally, I see an ophthalmologist, someone who specializes in diseases of the eye. I come in feeling like my right eye’s exploding out of my goddamned head, sobbing in pain, shaking with sleeplessness and terror.

They’re running tests and they’re asking me about family history: Does someone have colitis, Crohn’s? Does anyone have a neurological disease?

“No,” I say. No, no, no. The tests don’t reveal anything. Yet again, they tell me to stop wearing my contacts—which I’ve already done. “Take these drops immediately if you get inflammation again,” the doctor says.

That’s it? I think. That’s the answer? I’ve got some mysterious eye problem that requires drops that I’ve already used before? Living in daily pain, unable to go to class during flare-ups, and sitting in my house with sunglasses on is my new normal?

Unacceptable.

My aunt with eye cancer suggests a major hospital with specialists a city away. There, they diagnose me with uveitis, an inflammatory condition that destroys the eye tissue, and they also test me for something called HLA-B27, an antigen associated with certain autoimmune or immune-mediated diseases. They think I’ve got ankylosing spondylitis, a degenerative, inflammatory spinal disease, which sometimes first presents with uveitis. I test positive for HLA-B27, but no radiography can confirm my diagnosis until my disease progresses further so that my spine’s vertebrae are visibly fusing.

I’m sick, but no expensive, fancy machinery can pinpoint why just yet. To exist in this liminal space—of being sick and unable to prove it, of being in pain but unable to predict it—is wearing on me. I stay up at night wondering what’s happening. I wonder if, when I’m with friends and tell them I’ve got to go, I’m creating my own prison of sickness. And the pain—it’s always present. Soon enough, a day won’t go by where my hip or my neck or my back is free from it. I won’t remember a life where the sky is blue and the dinner is delicious and the people are laughing and I’m not cracking my back and contorting myself into positions that help relieve the ache. The doctors tell me to come back when the symptoms reappear or worsen. I’m silenced by my doctors and by my own body; it’s not sick enough to prove itself right.

I begin to morph, to grow inward, to worry. I try not to make myself a victim. Am I hypochondriac? I wonder. Am I just a delicate little flower?

Something is wrong, my gut says.

I am tired. I am a tired girl. I am an in-pain person. I am different now.

I am angry and resentful of friends and family who can’t see it. Of them not noticing how tired I am. Of them telling me, “Well, you look okay to me.” Of them telling me to do yoga and drink green juices and meditate. Of them telling me it’s the eggs we eat. It’s the meat, gluten. It’s pollution. It’s my job.

As if I have a choice in most of this. As if I have the time or money or energy to fill my days with yoga and juices and swims and stress-free, vegan lunches. I learn then that everyone wants to be your doctor, but they don’t usually want to sit down and talk to you face-to-face about your past, your symptoms, or what you’ve tried before. They say things like, “Have you tried turmeric?” and, “I have a great acupuncturist,” or “This is a spiritual awakening!” What they mean is, “I care,” but how it’s translated is usually, “My quick fix could end your suffering.” These offers to help sound flippant and trite, no matter how lovingly they might be intended.

In the end, the issue isn’t just other people, though. It’s who you turn into. It’s the loneliness of being sick. It corrupts even love, even kindness, and it reduces your patience to ash. No one wants to carry that.

My final diagnosis comes in 2017, almost a decade after the pain began. I’m at a fancy hospital, paying hundreds of dollars to get a fucking answer. I remember what the doctors said years ago, that they thought I had ankylosing spondylitis but had no proof of it.

I want proof. I demand it. And I get it. “You have ankylosing spondylitis,” the rheumatologist says. It’s progressed enough that my X-ray shows it this time. My spine is fusing.

The injectable medicine hurts going in, and none of my friends know how to ask me about it. They either don’t understand that I need a medicine for an invisible illness, or they assume the medicine is fixing me when it is not. The drugs suppress my immune system, and I get shingles and a lung infection. I stop the medication. The cycle continues: different drugs, different physical therapies, holistic treatments, self-care like it’s going out of style, saying no to plans, pushing through pain, constant exhaustion, the fear that I’ll be immobile in 10 years. My spine, waging a war against itself—and me. Throughout, doctors telling me to take it easy, that it could be worse, that men tend to experience ankylosing spondylitis pain more intensely than women. But what does that have to do with me?

According to a 2012 study in the journal Pain, chronic pain is associated with more daily expressions of anger. No shit, right? We don’t exactly need science to tell us this. Anecdotally, plenty of women express feeling anger around chronic pain. It’s not just the pain that causes it, though, it’s that the world isn’t built to accommodate invisible illness. We’re trained to see sick people as burdens on society and on our patience and comfort. The chronically ill are sometimes accused of “playing the victim” for pity or attention. If being a “victim” is what it takes to find accommodation, understanding, compassion, financial aid, and employment considerations, sure—I’ll play the victim.

History has drawn women in the shape of weakness. In the shape of melodrama. In the shape of less-than.

In a 1990 Sex Roles study on patients who’d undergone surgery to improve their hearts’ blood flow, researchers found that female patients were less likely to receive pain medicine and more likely to receive sedation than male patients. As if we’re not in pain, we’re hysterical. As if it’s not physical, it’s psychosomatic.

There are cases upon cases of women suffering from chronic illnesses—like
fibromyalgia or endometriosis, as just two examples—who are told they’re either lying or falsely reporting their pain. All of this is compounded for women of color and trans women.

How do you not internalize this negligence? How do you fight against this demand for proof? How do you not learn to question the severity of your own pain at every turn? I think of how my doctors seemed shocked I wanted to see a specialist. I think of how some of my friends accuse me of “taking it too far.” When I cancel plans, I’m a flake. When I leave early, I’m a downer. When I say it hurts, they say, “Well, you look fine.” When I say I feel tired, they say, “Well, you wrote a book! It can’t be that bad.” I think of how my symptoms were seen as a fault of my own, as if I wasn’t sick but instead guilty of jamming a contact lens into my eye. It wasn’t easy to ask for another appointment, to advocate for myself, to demand more blood work. The truth is, if the pain wasn’t as severe, I may have just cowered and ignored my instincts. I may have just accepted that I was being paranoid, hysterical, overly sensitive. Why does it take so much to make them see?

The silencing and the invisibility lead to anger, and the anger leads to sickness. Poverty and ignorant employers lead to anger, and the anger leads to sickness. Insurance bureaucracy and the lack of social and community accommodation lead to anger, and the anger leads to sickness.

The whole cycle is broken; the body stays ill. That’s the collateral of a system that erases the voices of the sick and disenfranchised.

I am a spine on fire. I am a collection of joints and bones and tissues that wage war. I am every step in pain. I am not thinking clearly. I am not moving quickly. But I am also not going to be quiet.

Gone are the days of staying silent when a friend reduces my experience. Gone are the days of sitting idly by when a doctor refuses to go into detail. Gone are the days when I snuff out my light simply so others won’t feel the glare. There is too much beauty in being alive to silence my intuition, to ignore my body, to not sing its needs and demand they be met. As it turns out, my anger has become my savior.

Excerpted from Burn It Down: Women Writing About Anger by Lilly Dancyger. Copyright © 2019. Available from Seal Press, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group Inc.

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