A letter of encouragement to my newly diagnosed self

Words of wisdom gleaned from a Cushing's journey laden with challenges

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by Noura Costany |

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Dear Noura,

I know how scared you feel right now after being diagnosed with Cushing’s disease. I know you hid in the bathroom night after night and cried yourself to sleep. You thought your life was over and that nothing would be OK again.

Since getting sick, so many of your friends abandoned you, and some family members have gone silent. I’m sorry because I know how alone you feel.

First, I have to tell you the bad news: It gets worse before it gets better. You’ll have a pituitary tumor removed in a few months, and you’ll feel completely alone in a Texas hospital. Because of COVID-19, no one will be allowed to visit you. It’ll be hard, and you’ll be in a lot of pain.

It’ll also take you a while to find yourself. You’ll be confused as your ideals change and your career shifts. You’ll struggle, cry, and get stuck over and over again.

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Then, you’ll move out of your parent’s house and into an adorable apartment in Queens, New York, with your partner. The super will let you paint it green. After some time searching for new connections, you’ll make new friends who’ll love you so much. You’ll still be in touch with others who wanted to be there for you before, and you can rely on them.

Nov. 5, 2021, will be your wedding day, the best day of your life. Your feet will hurt from dancing all night, and your heart will be full of more love than you’ve ever felt. You’ll spend an incredible honeymoon in Thailand.

Another wedding, another setback

Your brother will marry the love of his life in Costa Rica, which will be beautiful. But while you’re there, you’ll start to notice you’re feeling a bit off. You’ll see you’ve gained weight, your period has stopped, and your striae are growing again. You’ll ignore it for a while, but it’ll get worse.

You’ll realize that your Cushing’s is back, and this time it’ll be worse. You’ll be very weak, and you won’t be able to have surgery right away. You’ll have to use a wheelchair, which will take some adjustment. Your experience with the disease will be scarier than the first time you had it. You’ll struggle, you’ll stumble, and you’ll literally fall.

But you’ll get back up. You’ll work through it with your partner, your family, and your friends by your side. You’ll learn to master the wheelchair, and mobility aids will become an extension of you. You’ll find jobs that give you a sense of fulfillment.

You’ll set aside your desire to be an actor because now you want to pursue writing. Luckily, you’ll find a community that lets you write about your illness, which provides you with a sense of purpose. You’ll even write an entire novel (and hopefully, even publish it one day). And you’ll give up on some dreams to make room for better ones.

In October 2023, you’ll be the happiest you’ve ever been. You’ll be pursuing your dreams, connecting with supportive communities, and learning to love yourself. You’ll even receive test results that show how healthy you are and how much you’ve improved.

You’ll go through a lot of good and bad before you get to this point, and I’m sorry about that. But my goodness, life on the other side of it is filled with so much happiness.

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.


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