My story begins about three years ago, two years before I was diagnosed with Cushing’s Disease. The difficult thing about Cushing’s for me is that the symptoms are mostly based on physical appearance. I first noticed acne, weight gain, and irregular periods. When you try to explain these symptoms, they’re written off as things that “just happen when your body changes”. My mom agreed that something was off and encouraged me to keep going to the doctor. I got medication for acne but everything else was disregarded.
Thinking I must just be imagining these problems, I ignored them and tried to push them aside. I studied abroad in France for four months and didn’t notice anything extremely out of place. There was so much going on in my life and everything was so different, I wasn’t sure if my symptoms were just from being in a new environment. But when I got home, over the course of about a month, I lost half of my hair. I had always had thick, wavy hair. I complained about the frizz and having to manage it but all of a sudden, when it was gone, I missed it. I couldn’t put it in a ponytail without bald spots and it was too thin to put in braids. It wasn’t just my hair that changed. I didn’t identify with this image of myself. My face swelled, my skin reddened, my blood pressure increased. I was gaining weight, regardless of any dieting or exercising. I felt like I was running in circles, spiraling downward. This was the body of my disease.
It was clear that something was wrong. I could feel it. Yes, women gain weight, and yes people lose hair during stressful events. But I was an active, 21-year old female. I know my body and I knew that something wasn’t right. But Cushing’s is difficult to diagnose and requires precise testing. Unfortunately, the first doctors I saw dismissed me with comments like “It’s stress”, “It’s because you traveled”, and “It’s because you’re getting older”. Finally, after six months of appointments and worsening symptoms, my mom and I did our own research and suspected Cushing’s Disease, and I found an endocrinologist willing to test me. I took the dexamethasone suppression test at 11pm, got my blood drawn at 8am the next day as instructed, and I waited.
“Lila, I have your results and I’m a little surprised. Did you take the dexamethasone the night before your blood work?”
“Yes”, I responded.
“Were you feeling at all sick or was anything wrong?”
“No”, I responded again.
“Your results show abnormally high cortisol levels. We’re going to do a few more tests.”
Three weeks, another round of blood work, a saliva test, a urine test, and an MRI later, we found the source of my disease; I had a tumor on my pituitary gland. It sounds strange to be excited about a tumor but at that moment, I was ecstatic. I finally had an answer. I finally understood what had been happening the past two years.
Getting the diagnosis was only the beginning of the journey, however. After that came rounds of tests, appointments, follow-ups. I had to be careful with my body, being under constant surveillance and scrutiny. Well-meaning advice ate away at me- get more sleep, eat less sugar, exercise more, rest more. It was exhausting fighting against my own body and my growing insecurities. And for a while it was hard to feel beautiful. It was hard to be a 21-year old female, feeling like my appearance was slipping away, entirely out of my control. These changes might have seemed small or even unnoticeable to other people but this was my body. With these aesthetic changes came deeper emotional struggles. I had consistently high blood pressure and anxiety. I knew it would all go away after the surgery but I had been living with these problems for two years and the end still seemed so far.
One day, as I was rushing from yet another doctor’s appointment to a blood test, trying to make it back to work on time for the third time in two weeks, I broke. On the sidewalk outside Mass General Hospital, the anxiety, nervousness, and frustrations that had been building and building finally overwhelmed me. I always try to be a positive, independent person. I want to find the silver lining and solve my own problems. But this was too much. I needed help. At that moment, a kind stranger saw me crying and changed my life. She hesitated at first, unsure if she should approach me while I was so upset. She came over and told me she worked right next door and that I was welcome to come in and talk if I wanted to. I wasn’t sure at first- I didn’t want to burden this stranger with all of my feelings. But I needed a helping hand and here it was. I went in with her and we talked for hours. She helped me make appointments, figure out insurance, and just vent about everything that was happening. At that moment I realized how far one act of kindness can go. It really is true that you never know how much of an impact one action can have.
After that point, I still got frustrated by what was happening but I felt so much relief and encouragement knowing that people cared. My friends and family were beside me every step of the way. I couldn’t have gotten through it without my roommates, sympathetic listeners whenever I needed it. My mom was in NJ while I was in Boston but she did everything she could to support me. I started to realize that hard times bring out the best in people and make you see what is really important.
Ironically, as my physical appearance declined, my confidence soared. I saw how shallow and fleeting appearances are and really took notice of what makes a person beautiful. It’s not their hair or their makeup. It’s their passion. It’s their personality. It’s their love. And while I didn’t exactly enjoy having bald spots, I did enjoy looking deeper into myself and finding my true beauty.
On December 7, I arrived at the hospital at 5:30 am with my mom. 7 hours later, I woke up, tumor free. A few ups and downs in the following weeks, but overall my medical team was incredible and I recovered amazingly. Now, about a year after my surgery, I am back to my old self. I feel healthy and active. I am training for my second half-marathon and loving my senior year of college. To any other Cushing’s patients out there, please know that it will get better. There are highs and lows and it seems like the journey will never end but know that it will and you are strong. I will never forget what I learned from this experience. Through this disease, I was able to realize so much about myself and what really matters. I was able to see that my friends and family are so dedicated and loving and will do anything for me. And I was able to truly understand that beauty is only skin deep.