Chasing Hair

A Life with Alopecia Areata

Left: 8th grade graduation Right: By ArtBlanche with a full head of hair

It’s just hair.

That’s a comment I would hear a lot. The intention was to soften my feelings about finding hair on the floor, in my brush, in the sink, in the shower or in my hands. My hair was everywhere except my head. But I was encouraged to be grateful because it was just hair.

To an extent, yes, I was grateful, but that didn’t make the experience any less painful. When your body turns against you in any way, there isn’t enough consoling to make it better.

I began loosing my hair at the age of 5 or 6. My mom found a spot on my head and began taking me to doctors. All of them. My mom was in a panic. I remember her crying in the dark. I was young. I didn’t understand what was happening and I also didn’t care. I just wanted to play.

After many blood tests, the diagnosis came back positive for alopecia areata, an autoimmune disease the affects the hair follicles. Basically, your body decides that your hair is an invader and works overtime to get rid of it. There are two other types of alopecia, totalis (hair on the scalp) and universalis (affects the entire body). I had Areata which is characterized by patches on the scalp or anywhere on the body. I experienced it on my head, eyebrows and eyelashes. And wouldn’t you know it, my mustache passed down by my Italian great-grandma was never affected. I would have been full on Mario if I didn’t start waxing and bleaching. Anyway…

The first time I came online about this diagnosis was in 1st grade. My mom had me fitted for a wig. I wore it to school one day and we were playing duck duck goose. I was happily running and laughing and then my wig fell off in front of everyone. They pointed and laughed. I was devastated and so embarrassed.

I came home that day with my wig askew and a tear stained face. My mom greeted me at the door and I pulled it off my head and I said, ‘I’m never wearing this again!’ From that moment on, I became obsessed with truth. I never wanted to be found out again.

Alopecia areata comes in stages. I went into remission around 5th grade. I remember that my hair was long and beautifully black. I would french braid it and you know I had those amazing 80/90s bangs hair-sprayed within an inch of their life! But then, in 7th grade, the fall out began again. This time, I very much cared.

I tried so hard to cover my spots as they came in. I would spend hours in the mirror trying to cover things just right. I would wear giant clips or bows or scrunchies in hopes that they would help to cover my indiscretions. My biggest fears in those days were windy days (I lived in Chicago), rain/swimming and someone sitting behind me in class. I would always try to sit in the back.

One day on the bus, this boy (and yes, I do remember his name) ripped my big bow out of my hair and revealed my giant bald spot. Again, the laughter. It was horrible.

My hair continued falling out to where I couldn’t cover things anymore. I had some patches of growth and some long hair. It was wild. Below you can see a picture of me from my 8th grade graduation.

For treatment at this time, I was using topical steroids and creams. My mom would put these on my head at night. It was a ritual. And every night, I would pray that I would wake up and just be a normal girl. I longed to have hair that I could just comb and walk out the door. I wanted to have a swinging pony tail just like all the other girls. I wanted to be pretty.

And one day, my dreams came true. My hair came back towards the end of my senior year in high-school. I made it to the pom squad with my little tufts of hair. I certainly stood out on the football field! By my freshman year in college, I had a cute sassy bob. Oh, that was so much fun to play with and whip around while I danced!

Throughout most of my adulthood, I was passing. No one knew my secret except my hair dresser. I would have a spot here or there but I learned to cover it with eye shadow. I would visit my dermatologist twice a year and she would inject a steroid into my scalp. Ouch! That seemed to work.

But then, at what I considered to be the height of my career, my hair began falling out again. This time, I was an international burlesque star making a living being sexy. You can imagine the panic I was experiencing. How was I supposed to continue doing this job when I was going bald…again.

My chase for hair was on! My life revolved around hair. I was going in every month for steroid shots. I was trying shampoo after shampoo that all promised to stop fall out and regrow hair. I was taking supplements. I was counting the hairs that I found and keeping a journal that detailed my routine for the day and how much hair I lost. My doctor couldn’t help me. After 2 years of shots, I said there must be something I can do! She just looked at me and shrugged her shoulders and said, ‘It’s hard.’ That wasn’t good enough. I entered the rabbit hole of learning about autoimmune diseases and anti-inflammatory diets.

Turns out my steady diet of mac and cheese and bourbon wasn’t helping my situation. I changed everything. I went on a strict diet of NO. I spent thousands of dollars on functional medicine doctors, labs, acupuncture, Chinese herbs and supplements. I lost a distressing amount of weight. And the hardest part; I kept this all a secret.

I began wearing turbans and stealthily (or so I thought) changing into wigs in the bathrooms backstage. As you now know, wearing wigs was also traumatic for me.

by Robert Kelly

After years of hiding this secret, I decided to come clean. I had to tell people what was happening. I couldn’t hold this any longer on my own.

In 2018, I made a video called The Big Reveal and I took off the wig and shared my secret. I was terrified I was going to lose my career. But to me, the risk was worth the freedom. When I clicked publish on the video, I held my breath. What came to me was an overwhelming amount of support. It was humbling and a huge lesson for me. We don’t have to go it alone.

I stopped hiding. Below is the first photo shoot I did without a wig. I had been working with this photographer (ArtBlanche) for years and he had no idea until he arrived.

Then I began performing without a wig. I started showing up as me. It was difficult to do when I was backstage with glamour girls. But I was making a choice to stand in my difference. It felt important to me to honor that, not only in myself, but to all those in the audience who felt different and who felt like they couldn’t be who they really were.

I now have the confidence I always wanted. I no longer want to be normal. I love that I’m different. I love my story and my pain. It has made me the person I am today.

I am still always in pursuit of truth. I am still revealing myself as I discover more of my truth. It is a striptease that never ends. For that, I am grateful.

And now, I get to help people step into their confidence. I LOVE this job. I truly believe that we can all get to a place of comfort within our own skin and experience.

If you would like support in your confidence journey, contact me HERE.

For all my fellow alopecians, I see you. You are beautiful. Shine brightly, my friends!