Betty D's Alopecia Story
Everyone knew me as someone that had beautiful hair.
As a rising hairstylist, I was a walking billboard for the salon that I was working in. I gained so many clients just from my hair alone. Back then, my hair was my signature.
Friends, clients, and stylists alike all called me Betty D. I was given the nickname because at the time there was another stylist in the salon that was also named Betty, so when people would come in or give us a call, they would ask to schedule with Betty. And then the question was always, “Which one? Betty D or Betty C?".
And just like that, Betty D was born.
As my styling career was blossoming and my client list grew longer, I started to notice that my scalp was sore. It was sensitive to the touch, and on some days it felt like it was on fire. When a few times a month turned into multiple times a week, I knew that there was something wrong.
Luckily, the soreness went away and life seemed to move on. I went on to have my daughter and twin sons and the soreness felt like a thing of the past.
“It was probably just stress”, I would say to myself. I was a wife and mother of three and my hands and heart were full with the beginning of a new chapter in my life. “Things are okay”, or so I thought.
I remember the day that I first noticed it — it feels like it was just yesterday. It was a beautiful summer day and I had gone on a walk with a friend to my favorite park in Ohio.
To take advantage of the warm weather, we had a girl's day in the park. We brought some snacks and walked on the trail before finding a bench to sit and talk. As we were leaving, my friend stood up and grabbed her water bottle. When she turned and looked down at me, noticing the top of my head, she said, “Did something happen to your hair? It looks a little weird right there.” What she noticed, and I later saw in the mirror when I got home, was a small, round patch, right in the center of my hair.
I felt like I couldn’t move. As a stylist, I thought about all of the things that I could do to fix it. But deep down, I was terrified. I hadn't been diagnosed yet, but I was very familiar with what it was. I’d witnessed it in a few of my clients.
I felt like a fraud.
Every time I sat a client down in my chair at the salon, I felt so embarrassed, as so many of them would tell me that they dreamed of having hair like mine. They had no idea of my secret battle. I was going to the dermatologist as often as I could, getting injections on my scalp, using every single topical solution, “miracle cream”, and medication they would prescribe, to desperately try to make my hair grow back.
My life started to feel like I was constantly looking over my shoulder. I was so afraid of being exposed and someone seeing my bald spots showing through my hair. I felt ashamed of constantly breaking down crying and having to reapply my makeup during my lunch break.
With the rate of my hair loss, I had to be very creative with my hairstyles because the thinning had spread across the center of my scalp.
I was later diagnosed with Central Centrifugal Cicatricial Alopecia (CCCA alopecia). At this point, my hair was falling out by the handful and my trips to the dermatologist were becoming more frequent. I’d bring along my sandwich baggie to each visit, to show how much and how fast it was all falling out.
Stress played a major role in the progression of my hair loss. My life felt like it was falling apart and my stress stemmed from work, finances, and watching the disappointment of my children during my divorce that followed a few years later.
I was never able to wear my hair down again because at that point, my hair had become so thin. For the last 10 years, the only hairstyle I’ve been able to wear is a bun.
Alopecia has taken a significant amount of the hair on my scalp. For now, I have enough to cover it with a bun. It’s just enough for me to hide in plain sight. To this day, I get compliments like, “Wow, you have such pretty hair” or “I wish I had hair like yours”.
On the outside, I smile and thank them, but on the inside, my heart breaks a little. If they only knew how long it takes me to get ready in the morning or how many cans of concealing spray I use to try to hide my spots — most days, I can't cover them all. If they only knew how many times a day I check to make sure that none of them are showing.
If they only knew what was really happening underneath my bun.
I’ve been living with CCCA alopecia for almost half of my life. It’s taken me years, but I’ve accepted that my hair may never grow back. I’ve come to terms that one day, it’s likely that I’ll lose it all.
I miss the feeling of wearing my hair down, swooping it across my face, or tucking it behind my ear. Soon, I may have to make the brave decision to shave off the rest of my hair and trade it in for a wig or rock a bald head. And that's okay.
This is what my journey with alopecia looks like. Alopecia isn't always what it looks like.
I’m no longer hiding. Instead of being embarrassed by something that I can’t control, I’ve chosen to embrace that I am strong, bold, and brave with or without my hair.
Countless alopecians are living among us that are on their journey with alopecia and we each have our own unique story. To see the suffering of my fellow alopecians is what directly inspired Betty D’s.
Created by a brave alopecian and with the support of my daughter, we’ve created a community inspired by the collective stories of alopecia. This is a safe place for my fellow alopecians to share their lows and to celebrate their triumphs. It’s also a place to uplift and stand in solidarity with someone you know that may be living publicly or secretly with alopecia.
Here at Betty D’s, we stand together to understand this disease, build awareness, and provide advocacy and support to a community that truly deserves it.
Ladies, I understand that our hair is often one of our greatest forms of self-expression. I feel your pain as you reapply your makeup after grieving the loss of your hair. Gentlemen, I applaud you for your courage, your bravery, and your vulnerability.
To our innocent children, tweens, and teens whose identity can often feel like it lies at the hands of bullies at school or people who don’t understand that you are “different”, you are not alone.
And to our families, friends, and supporters — thank you. We may feel isolated and suffer alone, but together we’re an army.
Welcome to Betty D's.