Today something really interesting happened to me. I went to the mall and two people told me how much they loved my hair. They loved the color and they loved my curls. They said they wished they had hair like mine. My response? “ For the low cost of $26.99 you CAN have this hair. Why? Because it is a WIG lol!”
It always shocks people when I tell them I’m bald. They typically don’t believe it until I show them pictures of me without a wig on. It hasn’t always been this easy for me to talk about it though.
Three years ago I was diagnosed with Lupus and three other diseases. I couldn’t believe that at the age of 27, a single mother, working and going to college full-time, I was being told that I had these incurable diseases. I didn’t even know what Lupus was. I then learned that Lupus is an autoimmune disease in which the body’s immune system begins to attack itself. One of the first places Lupus attacked me was my hair follicles. It caused me to lose all of the hair in the middle of my head.
While Lupus also attacked my heart, my brain, and caused seizures, I’ll be honest, as a woman, the thing that bothered me most was losing my hair. Going out into the world was hard, because of course people would stare. People either thought I was trying to be super edgy or they pitied me because they knew I was sick. It wasn’t until after about six months that I finally got to the point where I saw my newfound look as something cool. I realized I had options. I could wear hair if I wanted to, or I could shave my head and look like a “model”. I could look however I wanted to, rather than be tied to covering my baldness with a wig or a weave.
Prior to finding out I had Lupus, I had thick shoulder length hair. The hardest part about the hair loss for me was the fact that I only lost my hair in the middle. Once I finally decided to go bald, I actually had to cut my hair in the back to finish shaving it. It’s ironic because when I had hair, I was a very insecure person. Our society bases so much of our self esteem on how we look, but once how you “look” is taken away from you, you have to learn a new ideal of what self esteem is.
I now use my bald head as a walking billboard to educate people about Lupus.
In October of 2010 I started a non profit foundation called The Purple Rose Foundation to educate people about the disease and empower them. I want to let them know that whether it is hair loss, or crazy face rashes or scars, it doesn’t stop them from being beautiful. I’m passionate about spreading Lupus awareness because even though almost 2 million Americans are diagnosed every year, most people don’t even know what it is. We want to make Lupus a household name. By working with other Lupus groups, such as Running for Lupus to have celebrities to bring awareness by throwing the Lhandsign for Lupus and speaking at schools to educate people about the disease, we can do that.
Just the other day I met a little 10 year old girl who was diagnosed with Lupus three years ago. She was very insecure because Lupus meds had stunted her growth. I lifted up my wig and I showed her my bald head. I told her that no matter what this disease does to her, as long as she feels beautiful, she is beautiful. I love that what used to make me feel ashamed, I can now use to help empower other people as they battle this disease. I may have Lupus but Lupus does not have me. Hair or no hair, I am me and I love it!