Unpretty: How A Lupus Diagnosis Helped Me Get Over My Shallowness And Feel Comfortable Being Seen And Cared For
May is Lupus Awareness Month. For information on the disease and how to get involved, visit Lupus.org.
In December of 2018, I was diagnosed with lupus. The first time the word lupus was uttered to me was three months earlier when I stopped by my dermatologist to check out a rash that seemed to colonize my entire face. Lupus, the word alone felt ugly and I was scared.
Lupus is a chronic disease that causes inflammation in the body and commonly affects a person’s skin, joints, and internal organs. Upon learning more about the disease, I realized I’d been experiencing minor symptoms, like joint pain, over the course of several years but I didn’t check it out and shrugged it off as simple growing pains. My parents came from countries where people didn’t have adequate access to health care, and even the most elite didn’t go to the doctor for routine check-ups. Even though my health-conscious Haitian mama eventually worked for more than 20 years as a certified nurse assistant I spent years in between my annual physical. As a Black person I didn’t trust doctors, and for very good reason. I was more like my stress-free Sudanese dad when he went to a doctor — only because a major event occurred. In this case, the disfigurement of my face was the event. And for me, it was more than skin deep.
In 2018, I was a young professional finding my place in the world. Earlier that year, I moved into my first apartment, I successfully completed my second year at my first full-time job, and I had just celebrated my 26th birthday. Twenty-six was different than 25. It was going to be my year. I was feeling grown and empowered –- very Joan a la Girlfriends, my icon who was successful and beautiful. Lupus seemed like it was going to make that nearly impossible.
I never worried about my skin. I knew it was sensitive due to some minor breakouts but nothing on this scale had ever occurred. Having a chronic disease meant that these types of outbreaks would continue to pop up and I felt awful. My butterfly rash took up so much space. I lamented how I looked in the mirror. I knew that I cared about my looks but I didn’t realize how connected to my self-esteem it was. I was reverting back to my younger self, feeling unremarkable, insecure, and ugly. Even worse, I was ashamed that I cared so much. I was unremarkable, insecure, ugly, and now a shallow bitch. I was spiraling. To top it off, I was losing my hair. It was a massive hit to my confidence. I cursed at Lupus, the great colonizer.
Growing up, I never felt normal and desperately wanted to fit in. I was bullied for being Muslim in a post-9/11 world and often felt othered. I didn’t get complimented for my looks, and if it wasn’t for my hijab that made me stand out I would’ve probably completely faded into the background. I would go home and cry to myself because I believed I was ugly. I didn’t talk to anyone about how I felt. As a teen, I leaned into my outsider identity and expressed myself sartorially. I thrift shopped, customized my clothes, and incorporated my hijab into my fits. Being an outsider forged a path for me that centered fashion and beauty and I did it my way. I was okay with being different. I began to think of myself as beautiful. I blossomed.
Lupus forced me to really look at myself and I did not like what I saw. I thought back to my teenage self and how she would respond to a grown me being so unkind to herself on the daily. This is not who I was supposed to become. I wanted to make her proud of me. I wanted her to think of me as successful and beautiful. I tried to tell myself affirmations, that beauty is skin deep, that I was still beautiful, but I didn’t believe myself and I felt silly talking to myself in the mirror.
I knew I needed to change so I focused my energy on things I felt I could control. I started to take care of my health and not just my skin. I researched doctors, made more “just because” appointments, and took better notice of my symptoms. It felt good. I tapped into my teenage DIY goddess energy and started to incorporate hats and more sun-protective measures into my outfits. I channeled that creativity further by directing and styling monthly photoshoots that showcased adaptability and innovation. That felt better. Much to the dismay of my dermatologist I also started growing locs. I didn’t care that it might have increased the thinning of my hair. I’d always wanted them but was too scared to commit. My hair might not be around for much longer, so I might as well go out with a bang.
More than anything, what helped was talking with family and friends about what I was going through. Being vulnerable and not some Black superwoman persona I created for myself allowed me to be seen and to be cared for. My loved ones helped me practice gratitude and be proud of what I accomplished. But they also let me know it was okay to be upset with the changes. It was the last piece and something I didn’t know I needed.
Taking care of myself meant that I had to address multiple aspects of my wellness, and as I did my health started improving. My hair started to grow back, and my skin is improving. Overall, I feel much more in control and proud of myself. Teenage me would be so proud.