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Finding a New Perspective After Medication Changed My Appearance

Three years ago when I stared in the mirror, the face looking back at me was unrecognizable — swollen and puffy with what I now know is referred to as “moon face.” My body was similarly swollen, and most days I looked like I was seven months pregnant, another classic symptom of Cushing’s disease. Thanks to my years of steroid treatment, I had medication-induced Cushing’s which came with many side effects including, gaining 50 pounds, thinning hair and said moon face. And that was just what we could see on the outside.

It took me three years on steroids to become “cushingoid” as they call it. As a normally very petite person, I was extremely uncomfortable with the added weight and also felt trapped inside a body that didn’t feel like mine. As you may imagine, this was extremely upsetting and my self-esteem plummeted. Many people asked me “when my baby was due,” and in time I learned to brush off my embarrassment and just explain that it was side effects from my steroids and move on without being too flustered. But so often tears would follow hours later, devastated that my invisible disease became visible. I also felt anger, anger that after my mast cells had taken so much from me, they were now taking my appearance further, making me feel like a prisoner in my own body.

Three years ago, I began my 16-month taper off steroids, the painfully slow process of decreasing .5 mg a week. But slowly, I started to find myself again. I felt so much better both physically and emotionally, and for the first time in a long time, it felt like I had won something! But as with any chronic disease, it never goes away and I now ebb and flow with not just how I feel, but also with my appearance.

Currently, I look and feel more “cushingoid” than I have in a long time, adding to the never-ending list of things I don’t understand about my body. If nothing has changed, why is my body acting as it if has? Why is it again getting harder to find myself in my reflection? This has triggered me this week to feel an overwhelming sense of frustration and anger again, for the lack of control I have over so many things in my body. I also feel defeated knowing this will never go away. There is no end date I am working towards. My diseases are a part of me, and they, as much as I hate to admit it, control so much — even my appearance.

But today, while mindlessly scrolling through Facebook, I saw a reminder I so desperately needed to see. It was a post about being thankful for our bodies and for what they allow us to do, for the fight they join us in each day and for still waking up daily to do it all over again. In that moment I realized, despite all the gratitude I have practiced in the last few years, I never thank my body. In fact, I blame it. And while I know it will take time for me to fully appreciate what so long has felt like my enemy, I realize how much I actually ask of it. Daily, I push my body to live in spite of my diseases and it still continues to recover. And so far, no matter what challenges it faces or appearance changes that happen — my body continues to allow me to see another day. So, I am grateful for this new perspective, for the deep breaths I can take and for the feeling of my heartbeat reminding me of what a blessing it is to be alive.

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