Superstar

My alopecia is not your punch line

Gina Knight.
Photo: Courtesy of Gina Knight

In 2012, just months after having my first child, I found myself in the shower crying into my hands surrounded by my own hair.

Earlier that year, I had noticed a small coin-shaped bald spot on my head. I was pregnant with my first child and although it worried me, I put it in the back of my mind. As my pregnancy progressed, the spot I soon saw doctors who immediately chastised me for my hair practices: “Stop braiding your hair,” one doctor said, “Stop straightening your hair another said.

In fact, four years earlier, I started a successful hair and beauty blog called Natural Belle, where I talked about my journey to chemical-free Afro hair. My hair practices were actually pretty good — and However, I had a head of beautiful, thick hair that was now falling quickly. After dismissing the problem as just a black woman’s problem, my doctors continued to dismiss it as a pregnant woman’s problem. The hair loss was “normal”.

I trusted them, my alopecia got worse.

Through my own research and a visit to a trichologist, I later discovered that I had a rare form of alopecia called Central Centrifugal Cicatricial Alopecia (CCCA), an autoimmune condition that is likely genetic and primarily affects black women.

Last night I saw Jada Pinkett Smith poking fun at one of the biggest and most watched events of the year, the Oscars. But as others reacted to the slap that followed (which I don’t tolerate), I felt a sense of loss. and defeat – as if all the embarrassed feelings I had harbored had been validated by one flippant remark. I recognized the sadness on Pinkett Smith’s face; it sounded familiar.

Women with hair loss have all been ridiculed. Countless women have contacted me saying they have been insulted and bullied because of their hair or lack thereof. Seeing this happen to someone as well known as Pinkett Smith, and by his peers, shows we have more work to do.

What this incident has highlighted is how much he lacks understanding when it comes to alopecia. I’ve seen comments saying, “It’s just hair”, but I ask, “Would the same joke have been made if Pinkett Smith was bald from baldness?” to chemotherapy? Alopecia is not considered a serious disease because it is “not life threatening”. Earlier this month in Indiana, a 12-year-old girl killed herself because of bullying over her hair loss. Words can, in fact, be harmful.

At first I wore wigs and extensions, using them as a crutch to hide my alopecia from the world. I became aware of my hair loss which led to social anxiety which I still deal with. I always have trouble concentrating in social settings. I feel extremely embarrassed. I spent so many years hiding my hair loss and worrying about what people thought that I started not going out and socializing. At worst, I thought everyone could see my wig and laugh at me. A lot of my personality had to do with my hair, especially as a black woman. Culturally, our hair is used as a way to express ourselves. Hair has always been my creative outlet, and without it I felt lost.

In 2018, after losing more than half of my hair, I decided to shave it off. I wasn’t ready to do it, but I was tired. At first I felt unattractive and became obsessed with perfection. I figured if I was bald, everything else had to be perfect. I lost a lot of weight. Alopecia takes my control away. By shaving off the rest of my hair, I regained control.

Gina Knight.
Photo: Courtesy of Gina Knight

The road since then has not been easy. I was mistreated. I was misdiagnosed. I was misunderstood. Talking more openly about my hair loss has left me open to ridicule and mean jokes about my appearance.

But, eventually, I started connecting online with more and more women on the same journey as me. This community helped me feel less alone.

Although I still love wigs — I now have a business dedicated to them — I wear them as accessories, not something to hide behind. When I saw Pinkett Smith embrace her baldness I felt validated. A well-known actress normalizing baldness. How powerful. I wish I had seen that represented when I was making that decision for myself. position regarding my alopecia, although every once in a while I am reminded of how much work still needs to be done to educate people.Last night was just another of those reminders.

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