MY JOURNEY TO DIAGNOSIS
My diagnosis was unique and was caught coincidentally. I started feeling fatigued when I was in college. I went to the local clinic a few times and saw my primary physician when I went home to visit. I complained of insomnia and fatigue. They ran blood work, but nothing came up as wrong. They said I had depression and anxiety and insomnia. I tried various medications. Some helped temporarily; others didn't help at all. I also struggled with migraines and vertigo, which were increasing in frequency. I went from 1 migraine a year to about 2 per month.
Finally, at 24, I went in for what I thought was an ear infection. They ran an MRI after not finding anything. The MRI showed a mass on my pituitary gland. It all moved fast after that, like a blur. My tumor was large and needed to be removed. I didn't have a chance to finish all testing before surgery. Cushing's disease wasn't confirmed until the pathology on the tumor cells came back as positive.
My biggest struggle was acceptance. Accepting my life was forever changed. Accepting that nothing was going to be the same. Accepting that I would forever be monitored by medical professionals. While all of my classmates were getting married, having kids, buying homes—I was having brain surgery, attending multiple doctor visits per month, and getting poked/prodded what felt like weekly.
The best things I did were to start seeing a therapist and joining multiple online Cushing’s disease support groups, where I could read about others who had similar stories. I found solace in knowing I was NOT alone. While statistically my endocrinologist said I am the 1 per million—in her 40 years of practice, I was her sixth Cushing’s disease patient—I was NOT alone. My therapist helped me accept my new "normal" and come to terms with my diagnosis. I was able to voice my frustrations freely and work through my problems.
MY MESSAGE TO OTHERS
There are many things people don't understand about this disease because of how complex it is. I see people who are newly diagnosed that have misconceptions. I see people who have been living with it for years that make assumptions. I see my own friends and family not understanding anything I go through.
One thing that can be SO frustrating is to hear, "At least it isn't cancer." It does not give one bit of comfort hearing that. If anything, it's irritating. Some days I wish it WAS a type of cancer; at least cancer seems to have thousands of dollars of research pouring into it. People understand it. And there are usually many treatment options available. Cushing’s disease treatments are limited. Knowledge is limited. Resources are limited.
On the flip side, people need to understand: it is NOT an immediate death sentence. Attitude is everything. Believe you are strong and have the ability to beat it. Do not let yourself fall into that dark hole!