I Never Understood my Mom Until I Had a Diagnosis of My Own
“Call my mom. She needs to come now.”
It’d been five hours since I booted her out of the delivery room, and 20 since my water broke. She’d assumed the cheerleader role, and I couldn’t handle it. I sent her home to wait while I toughed it out, my husband digging his hands into my lower back to counteract the contractions. My platelets, to our surprise, were too low for an epidural. The pain was exquisite.
I was in a crisis — perhaps the scariest of my life — and I needed her with me. My midwife, a hospital nurse, and a doctor I’d never met whispered about an emergency transfusion, my soaring blood pressure, and the risks of a C-section. I, like so many of the women who birthed before me, thought I was going to die.
About 20 minutes after my husband made the call, my mom blew through the delivery room and clasped my hands. Hers were rough and cracked. I wasn’t the only one in physical agony. Stress worsened the painful psoriasis that covers her palms and the soles of her feet. She suffered as I did.
Spoiler alert: I didn’t die. I birthed a daughter named Willa. She’s 1-and-a-half years old now, curly-haired and wild, as she should be.
In spite of my delirium, I carry a few moments from the night of Willa’s birth with me: One is of my husband on my left and my mom on my right as I pushed through a contraction, nearing the end. “You can do it! You’re so close!” she said. Simultaneously, I rolled my eyes and grinned as I bore down. I may not have wanted a cheerleader, but I needed one.
Another moment is my mom snuggling my swaddled newborn in a chair beside the hospital window, singing to her. She never looked more beautiful. Grand-motherhood suited her. She had that glow.
I, on the other hand, was a hormonal savage. It’d be days before I could get a brush through my hair. Everything my husband said was hilarious. I belly-laughed from the bottom of my empty womb. And I mourned the life we had before our daughter.
I called my mom. She assured me that, while it’d be different, it’d be wonderful, too.
In that moment, I realized that I’d get to be a cheerleader for my own daughter — whether she liked it or not. We were links in a far-reaching family chain. I’d never been cognizant of my place in that chain before. It’s a remarkable thing. As I marched in and out of doctors’ offices, I did my best to tamper my postpartum highs and lows. Hematologist, rheumatologist, internist, primary: I’d amassed enough clinicians for a pickup basketball game. They were all trying to figure out what was going on inside my body.
The low platelets are immune thrombocytopenic purpura — doctor-speak for “I don’t know what’s happening here.” And a surprise rheumatoid factor — an indicator of rheumatoid arthritis — put my postpartum morning stiffness into a tidy, terrifying box. I had nightmares of not being able to dress my daughter. Of being confined to a wheelchair.
I called my mom. She told me to cross that bridge when I got there.
And when the lesions showed up, I called her again. At first, they were thin, pale, and oddly dispersed. They dotted my legs, my hips, and my back. She knew it was psoriasis. I imagined I’d won the autoimmune jackpot: thrombocytopenia, rheumatoid arthritis, and psoriasis. The trifecta, from the inside out.
My rheumatologist — bless her heart — thinks otherwise. Because of my mom’s psoriasis, she’s given me a definitive diagnosis of psoriatic arthritis. I’ve staved off medication thus far. But I’d be lying if I didn’t admit it: My hands are stiff every morning. The plaques on my legs — and a pitted scar where a dermatologist dug too deep — make me loathe summer dress season.
Recently, I asked my mom what triggered her psoriasis. She links it to the months before my wedding, when — like a carnival in a vacant field — she built my dream backyard reception from the bottom up. She thinks her disease manifested in the stress of it all. I found some dark humor in the notion that she brought my wedding to life and got psoriasis, while I brought my daughter to life and got psoriatic arthritis. (Worth it.)
The links of our family chain are spotted and cracked. Nevertheless, they’re resilient. Maybe Willa won’t have an experience — or, ahem, a daughter — that triggers a chronic disease. Maybe she will.
And if she does, she can call her mom.
New moms: Pay attention postpartum. A 2011 study out of Denmark found that the risk of autoimmune disease (AID) was “significantly higher” in the first year after vaginal delivery and cesarean section. According to the report, “These results suggest an association between pregnancy and the risk of subsequent maternal AID.”
Speak with your kids about your disease. Especially if it’s genetic. If my mom wasn’t open about her psoriasis, I might’ve missed it entirely. I spent most of my postpartum days examining my kid’s body, not my own. The lesions were relatively thin, and I could’ve happily ignored them.
Find a mentor. I was lucky; mine was built in. Online patient communities are a gift, but so is sharing physical space with a person and seeing firsthand how they manage their disease. If they’ve lived with it longer, they’re a fountain of wisdom.
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Casey Nilsson is a writer and editor based in Providence, Rhode Island. Follow her on Twitter at @casey_nilsson.