Chronically Yours – a Column by Noura Costany

“What have you eaten lately?” “You’ve lost weight.” “You’ve gained weight.” “When’s the last time you felt that depressed?” “How much urine did you collect?” “Spit into this.” “I need your blood.” “Take off your shirt.” “The marks around your breasts? Let me see.” “Can you explain exactly how you…

I was diagnosed with Cushing’s disease in 2020 after several years of suffering and searching for answers. Since then, many different people have told me their opinions on my illness or given me unsolicited advice. For instance, they’ll say that using my wheelchair less will help my muscles or ask…

Last June, my partner and I moved from New York City to Michigan. I was very involved with the healthcare system in New York, for better or worse. I was diagnosed with Cushing’s disease in 2020, and even though my main doctor is in Los Angeles, I still…

Right now, I’m doing a round of Cushing’s disease testing. I was originally diagnosed in 2020, and two years after my first pituitary tumor was removed, I was diagnosed with a recurrence. It’s now been two years since I’ve done any testing, and my endocrinologist wants to do a…

Cushing’s disease testing can be complicated, especially if the disease is cyclic, as it is for me. This means that my pituitary tumors release excessive amounts of hormones occasionally instead of constantly, causing my cortisol levels to fluctuate. Usually, testing is done for diagnostic purposes, but my doctor recently…

When I was pregnant, I received numerous comments about how Cushing’s disease might affect my parenting ability. Mostly, they focused on how my mobility aids and fatigue might keep me from caring for my daughter. These were major oversteps and obvious examples of ableism. But now that my…

“Two tumors.” I repeated the words to myself about 50 times before I finally told my husband what the MRI report said. “I have two tumors.” Having tumors wasn’t a huge shock. We’ve known for a while that there was a tiny, little tumor in there, but also that I…

Our daughter was born at 27 weeks, and we’ve spent the past two months in the neonatal intensive care unit (NICU). It’s been an emotional and challenging journey, but now we’re finally nearing the end. In the next few weeks, we expect to bring our little girl home. While we’re…

“It’s completely fine! No big deal,” I find myself muttering again and again as people ask how I’m doing. I laugh off how serious my situation is, quickly changing the subject. But then, at home, I end up staring at the wall and crying myself to sleep. As someone with…

I’m six weeks postpartum and have so much to reflect on. My water broke at 25 weeks, and I gave birth to my daughter at 27.5 weeks. The birth involved a lot of complications, including preeclampsia, a full placental abruption, an infection, and a loss of oxygen. All…