Chronically Yours – a Column by Noura Costany

I have very odd eyesight problems that are caused by Cushing’s disease, including visual snow, floaters, halos, and night blindness. According to neuro-ophthalmologists that I’ve seen, my actual eyesight is fine. My issues are caused by the high levels of cortisol in my body. My body responds to stress with…

Brain fog is one of the most frustrating issues I face with Cushing’s disease. It’s not one thing, but a collection of symptoms, such as memory lapses, confusion, trouble focusing, mental cloudiness, and unease. I didn’t realize that Cushing’s disease was causing my brain fog at first. I…

Being queer and chronically ill are two huge parts of who I am. I’m proud of both of the identities that influence my community and my life. For a long time, these two parts of me felt like a Venn diagram where the circles didn’t even touch. However, over time,…

The term “flare-up” is used to describe the sudden onset of aggravated symptoms. Although I’m medicated for Cushing’s disease, I still have significant flare-ups. Often, they’ll happen when I overexert myself, fail to rely on my mobility aids, or overestimate how good I feel. I also have flare-ups during…

I love it when kids ask me questions about my Cushing’s disease, because it’s a great chance to educate them. Kids are super curious, especially about my mobility aids and medications. In my experience, children generally understand why older adults or people…

Cushing’s disease significantly affects the menstrual cycle. When people hear that statement, they often think that the disease affects only periods, but it actually alters every part of the menstrual cycle. The first sign of Cushing’s disease for me was a complete loss of my period. One month, I’d…

Cushing’s disease can look different from one person to the next. One may use a wheelchair, while another is in remission. Someone might be on 50 medications, and another person might need only one. Therefore, simply saying I have Cushing’s disease doesn’t really explain how it affects my body.

Despite achieving success, some people experience impostor syndrome — the feeling that they’re not good enough or haven’t earned it. They may feel like a fraud, like they’ve tricked people into believing they’re good at something. For those of us with chronic illness, impostor syndrome may cause us to wonder…

Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com.

In 2020, I had transsphenoidal surgery to remove a pituitary microadenoma that was the result of Cushing’s disease. In simpler terms, doctors removed a 4 mm tumor through my nose. Later, due to a recurrence of Cushing’s disease, I had another pituitary tumor. This time, though, I wasn’t a…