Why hope is important in the face of Cushing’s disease

Last weekend, my husband and I took a trip upstate to see my family. We left late, so by the time we were on our way, it was dark outside. With an iced coffee in hand, I relaxed into my seat, singing songs with my husband and enjoying the darkness around me. I sipped on my drink, glancing over at my partner. It dawned on me that I felt happy — hopeful, even.

My mind snapped back to when I was diagnosed with Cushing’s disease in 2020. I had been sick for two years and had slowly lost my sense of self in the battle for a diagnosis. Finding out I had a pituitary tumor that caused Cushing’s disease made me feel conflicted. I was relieved to finally have an answer and terrified of what was to come.

I knew my life would never be the same.

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My family tried to surround and support me, but I was lost. I locked myself in the bathroom, curled up in the bathtub, and let water pool beneath me as I sobbed for hours on end. I could barely get out of bed; food lost its taste. I had no idea how to carry on, and I realized that I was losing hope.

This wasn’t how I pictured my life going. I had always worked multiple jobs and explored different internships. I volunteered and had time for my friends. I remember wondering, “What does this mean for me? Who will I be now?”

Round 2

About a year after I underwent endoscopic transsphenoidal surgery to remove my tumor, I was just starting to feel recovered and hopeful when I began to experience Cushing’s symptoms again. My stomach sank as I once again locked myself in the bathroom (this time in a new apartment) and curled up under the hot water.

I avoided it as long as possible, but eventually I had to face the music: I was sick again.

This recurrence, diagnosed in 2022, was more complicated. I couldn’t get surgery, at least not right away, and I had to be treated medically. My heart felt like it had been pounding for weeks. I started to lose myself again. Was this fair to my partner? What would happen to my career?

Who am I?

So as I sat in the car recently, staring at the love of my life, drinking an iced latte, and listening to music, I took a deep breath and slowly let it out. I hadn’t even realized that I had dug myself out of the hole. I had found myself through love, friends, self-expression, and writing. After I discovered that I was sick again, I dived into discovering exactly who Noura was.

My hair has been several different colors, I have two new tattoos and four new piercings, my husband and I are looking into leaving New York City, and, best of all, I wrote a book. Even if this book goes nowhere, I will write another one, and another and another until one gets published.

It’s not tenacity, fear, or drive that’s making me find myself. It’s hope.

I have hope that I will continue to learn how to be a productive partner, even with my physical limitations. I have hope that the work that I do at Bionews, the parent company of this website, and on social media will help others who are struggling. I have hope that I will keep learning how to be a great friend, sister, and daughter to those I care about. I have hope that my work, the books I have poured my heart into, will reach the right audience.

Hope. I had missed it so much. It holds a special place in my heart, and I can’t wait to see how my life turns out now that I feel it again.

You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.