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The first time my body rages against itself, its 2009.
Nanette Hoogslag/Getty Images
My little studios two windows become my enemies, pouring intense white light into the room.
The light is a dagger.
I cant open my eyes, I cant think, I cant do anything but scream, literally.
I get into the bathtub and pull the curtain to further block the light.
This isnt 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 anemergency roomwould use money I dont have.
No parental support, and no more college insurance.
Uber and Lyft dont exist yet, so I cant take a quick and cheap ride anywhere.
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.
Youve just gotcontact irritation, honey, the doctor says.
He gives me some steroidal drops, which help immediately (but not totally).
Just dont wear the lenses for a few days.
It cant be just contact irritationthe deep throb is too intense, the light too painful.
And my instincts are leading me.
I am a lighthouse to myself.
I dont know it yet, but this is my induction into the society of thechronically illand chronically silenced.
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.
Literal darkness is different from artistic darkness.
In the dark, creatures go blind.
They dont need their eyesight, so they lose it.
I dont 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.
Finally, I see anophthalmologist, someone who specializes in diseases of the eye.
Theyre running tests and theyre asking me about family history: Does someone havecolitis,Crohns?
Does anyone have aneurological disease?
No, I say.No, no, no.
The tests dont reveal anything.
Yet again, they tell me to stop wearing my contactswhich Ive already done.
Take these drops immediately if you get inflammation again, the doctor says.
Thats it?I think.Thats the answer?
Ive got some mysterious eye problem that requires drops that Ive already used before?
My aunt with eye cancer suggests a major hospital with specialists a city away.
Im sick, but no expensive, fancy machinery can pinpoint why just yet.
I stay up at night wondering whats happening.
And the painits always present.
The doctors tell me to come back when the symptoms reappear or worsen.
Im silenced by my doctors and by my own body; its 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 just a delicate little flower?
Something is wrong, my gut says.
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 cant 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 its the eggs we eat.
Its the meat, gluten.
As if I have a choice in most of this.
They say things like, Have you tried turmeric?
and, I have a great acupuncturist, or This is a spiritual awakening!
These offers to help sound flippant and trite, no matter how lovingly they might be intended.
In the end, the issue isnt just other people, though.
Its who you turn into.
Its 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.
Im at a fancy hospital, paying hundreds of dollars to get a fucking answer.
And I get it.
You have ankylosing spondylitis, the rheumatologist says.
Its 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.
The drugs suppress my immune system, and I get shingles and a lung infection.
I stop the medication.
My spine, waging a war against itselfand me.
But what does that have to do with me?
According to a 2012 study in the journalPain, chronic pain is associated with more daily expressions of anger.
No shit, right?
We dont exactly need science to tell us this.
Anecdotally, plenty of women express feeling anger around chronic pain.
Were 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.
History has drawn women in the shape of weakness.
In the shape of melodrama.
In the shape of less-than.
As if were not in pain, were hysterical.
As if its not physical, its psychosomatic.
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 aspecialist.
I think of how some of my friends accuse me of taking it too far.
When I cancel plans, Im a flake.
When I leave early, Im 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 cant be that bad.
It wasnt easy to ask for another appointment, to advocate for myself, to demand more blood work.
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.
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 wont feel the glare.
As it turns out, my anger has become my savior.
Excerpted fromBurn It Down: Women Writing About Angerby Lilly Dancyger.
