My journey to diagnosis
It took me between 8 and 9 months to be diagnosed with Cushing’s disease. I didn’t feel well and had seen changes even 2 to 3 years before I began the journey of trying to get answers. At first, I thought I had a food allergy. My face didn’t look like I’d just gained weight—it blew up like a balloon. I was unrecognizable. My primary care physician tested me for food allergies. I found out that I was intolerant to pretty much everything I was eating on a daily basis, so I cut a lot out of my diet—but there was no change. It was incredibly disappointing.
I knew something was wrong, so I continued to advocate for myself. Another test showed that I had an elevated white blood cell count, so I was referred to a hematologist. From there, I got referred to an endocrinologist. The more I learned from my test results, the more I researched on my own.
By the time I saw the endocrinologist, I was convinced I had Cushing’s disease, and I told him so. He was upfront that he was only vaguely familiar with Cushing’s disease and he literally did what I did—he searched Google with all of my symptoms together. By this time, I was antsy. I was desperate to be validated.
I was diagnosed in October of 2020, and honestly, it was cause for celebration. I finally had an answer. I was finally validated. And I could finally start curating a better version of myself.
Self-esteem was my biggest challenge. Self-esteem issues seep into all areas of life—my social life, love life, mental health—everything was affected by me thinking about how other people saw me. It got to the point where I didn’t even want to do things like go to the store because I didn’t want to run into anyone who knew me before I started having all of these symptoms. I also didn’t want to deal with the cliché things people would say. They didn’t understand. You can’t diet and exercise your way out of Cushing’s disease. I feel like I became this ugly person inside and out, and I was so angry.
Getting diagnosed actually helped. I was more gentle with myself once I had an answer for what was going on. And my mom has always supported me and reminded me to not be so hard on myself.
My message to others
Cushing’s disease is an opportunity to reinvent yourself. I will never be what I was prior to this, but that’s OK. I know that when you’re in the midst of it, struggling and looking for answers, it feels like nothing you do will make a difference. But that’s just not true. It’s important to me that people know that there is hope.