It’s said that 4 in 10,000 people worldwide have sarcoidosis, an inflammatory disease that can cause lumps known as granulomas to develop throughout the body. However, I’ve never seen one who is disfigured like me, though I know they exist.
When it appeared, I would cover the first lump on the left side of my face with makeup. At first, I thought the lump was an allergic reaction, until it didn’t go away after some time. I went to a plastic surgeon and had a biopsy. When I returned to the doctor’s office, I was informed of the findings. I recall hearing the word sarcoidosis for the first time; I didn’t have a clue as to what it was. When I went back home, I immediately started praying asking God to heal me. Little did I know that years would go by with no visible sign of healing.
Several years passed before another lesion began to appear on my right cheek.
At this point, I was extremely stressed out and wondering what in the world was going on as no one in my family had this issue. One year later, another lesion appeared on the right side of my eye. I became very frustrated with the mundane responsibilities of life, like going grocery shopping. Fellow shoppers would look at me as if I was contagious, and quickly look away as if I was the ugliest thing that they had ever seen. There were many times when people would stop and stare at me as if I was a fish in a fishbowl. To make matters even worse, children would stare at me while walking toward me with frowns on their faces. Elderly men and women would look at me as if I had Ebola! Imagine, if you can, standing out no matter how hard you try to fit in.
One afternoon while walking to one of my favorite natural health stores, I saw three teenagers — a boy and two girls —walking down the street. When I first saw them, I thought to myself, I should move over to the other side. After being rejected so many times, I just wasn’t up to any more rejection, at least not in that moment. But for some reason, I didn’t cross the street. As they came closer to me, the boy, who was probably only 13, yelled a profanity. The two girls kept walking. But the boy turned around, and, while walking backwards, pointed at both of his cheeks and shouted disgusting profanities.
I felt like I had been punched right in the middle of my stomach, and my heart sank as the tears formed in my eyes. That was a bad incident, but only one of many I’ve experienced from being physically disfigured – I face rejection, and alienation, every day.
I wondered why this was happening to me. I would later learn that environmental factors can make it more likely to develop sarcoidosis -- I lived in an apartment with mold for 15 years. But in the meantime, I resorted to trying to hide my face because the lesions were so big — larger than the size of a quarter. I tried to cover them with circle Band-Aids. Unfortunately, the Band-Aids kept falling off because the lesions were too large. My former pastor kept telling me that I should stop covering the lesions, but I couldn’t bring myself to remove them. As time went on, I stopped covering them even though they were more obvious than in the beginning. I eventually came to terms with truly loving myself when I heard an inspirational sermon that challenged me to fulfill my purpose on earth, regardless of being physically disfigured.
Even though I still have physical scars, my scars remind me of my purpose; this is my story.
We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on this patient-focused series. Once a month, patients affected by serious and often rare diseases share their unique stories.
Shanene Higgins lives in Oakland, California. She is the CEO of Higgins Publishing.
Photo by tgageqd