Health blog

Lupus WTF – Yael Valencia Aldana

Dear Donna,

I am sitting in the doctor’s office, not for my son’s father but for myself. It is a Monday. He is in a hospital bed two miles away, mending. The wisp of a man my son and I brought to the hospital on the edge of death is recovering. He wasn’t always a wisp. Five years of an autoimmune kidney disease is slowly killing him.

I am at my doctor’s office to review my own blood test results. I am very pleased with myself. I believe I have found a solution for the various ailments that have plagued me for these three years, light-headiness, heart pain, dizziness, numbness in my left hand. These are terrifying symptoms of a heart attack or a stroke, although I have had neither. No doctor can tell me what is wrong. But no matter, I am sure I have figured it out.

I tell the doctor as soon as I see him. He is African and my first male doctor.

“I know what is wrong with me,” I announce.

“That would be perfect,” The doctor says. I have my notebook in my hand with all my symptoms listed.

“It’s low blood sugar,” I tell him. “It accounts for everything, all the symptoms.” I show him my notebook

Then I point to my last test results. My liver enzymes are high, although I don’t drink.

“Something is going wrong with my liver, causing the low blood sugar situation. Obviously, we need to figure out the liver situation, but I have stopped my symptoms by eating more often and talking glucose tablets.”

He nods patiently at me. “Let’s go over your latest test results. He points at his computer screen. “See this antibody here? Double-stranded DNA?”


“It’s a sign of Lupus.”

I sit back in my chair. I am processing what he said, but I am devastated.

“I am going to refer you to a rheumatologist for the official diagnosis. But with your symptoms, it makes sense.” I am silent.

“Don’t be so upset.” He says. Your levels are low. Your kidneys are good.

“It’s still lupus.”

Furious, I go home and start to make a list of why I cannot have Lupus. First of all, Lupus is an incurable autoimmune disease. That is the number one reason I can’t have it. But as I write, things float to the top of my awareness. The terrible pain in my foot that would come and go in my twenties, my knee problems in my thirties. The more I write, the more I made a case for Lupus.

I decided to do something else. I was reading an article written by a pregnant woman going into graduate school. I laugh, I am also in graduate school for creative writing. I know the halls of academia are not usually friendly places for children or their mothers, Black mother’s even less. I have a fourteen-year-old son, and I was always getting side-eye from my professors whenever I had to deal with him.

Then I decide to so something else, for myself. I will wash my hair. I am thinking of the woman in the articles’ son, then my son, and then my symptoms. I am still arguing with myself that I do not have Lupus, but the symptoms are arguing back and are winning. A thought leaps from her son to my son, to my symptoms, to something terrible. I remember that my son has told me his that bones hurt so badly sometimes, And that by the time I get him to the doctor, the pains are gone. He calls me to show me these rashes that appear and disappear on his skin. These two symptoms, joint pain, and rashes are the typical manifestation of Lupus. I start screaming right there with my head bent over wet.

I cry bitter ugly tears, “Not my son, not my boy.” I call for my dead mother. I demand she come; usually, I ask gingerly but not this time. I am blind with grief and horror, and pain.

I scream for her. “Mum, protect him, don’t let this happen.”

She arrives as she always does. And as she always does, she puts me in check. She is the only one from the other side whose voice I can hear. My Grannys always help when called, but they are silent.

“Pull your Goddamned self together.” She tells me. “I can’t do anything about this. You pull up your bootstraps for that boy. We doan have no time for feeling sorry or foolin. You get to it.”

So I rinse my hair and get to it.

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