Kindly stop saying this to people with CCCA, part 1
..."But you don't look like you're losing your hair."
It's been 16 months since I was formally diagnosed with centrifugal cicatricial alopecia – CCCA – and I'd estimate I've lost 30% of my hair. But, I can camouflage it to where most people don't know because I'm blessed with tightly coiled hair.
But I know.
Every day, when I look at myself in the mirror to get ready for the day, I am reminded of how widespread my hair loss is. I know it's going to be a particularly rough day when I see that one of my bald or thinning spots has spread and I have to work harder – perhaps unsuccessfully – to camouflage the new loss.
As a woman – specifically, a Black woman who wears her hair natural, short and gray – hair is an important part of my identity. It makes a statement about who I am before I even speak. When I show up to a space, my hair tells you a story: it says I'm proud, confident, and unapologetically Black and middle-aged. Moreover, it says that I have zero interest in conforming to Eurocentric beauty standards.
I like what my hair says about me. I like that it represents my values. That's why losing it is emotionally painful.
...And this is why I get frustrated when I share my personal story with someone and their first reply is..."But you don't look like you're losing your hair." Or some derivative of that, such as "No one would know" or "I can't tell."
The first several times this happened, I would separate my hair so people could see a few of my bald spots. I no longer do that because I don't owe proof of my hair loss to anyone, even though it seemed to be what people were asking for.
It took a while for me to consciously recognize that I would leave these conversations feeling frustrated. And it took even longer for me to realize that the frustration was masking something else: hurt. I was hurt because saying those words invalidates and denies my lived experience.
After this a-ha moment, I went back to a few friends to ask what they intended with those words. Their response was one of two things:
1) It was the first thought that came to my mind.
2) I was trying to make you feel better.
My friends never intentionally meant to hurt me, and I imagine that's the case for 99% of people who would have this response. Perhaps I too would have used those same words if the shoe was on the other foot...because, as humans, we naturally and often say things without thinking through the ramifications.
But hair loss is a serious matter and it helps so much when the words people say uplift us.
So here are a few meaningful things you could say in response to someone vulnerable enough to share their hair loss story with you:
"I'm so sorry. I can't imagine how difficult this must be... I'm here for you."
"Thank you for trusting me with your story. I'm sorry this is happening to you and I admire your bravery."
"I'm sorry you're dealing with this, and I know you to be strong and capable. There isn't anything you can't handle...including this."
When your first words are caring, they serve to ease our grief. They make us feel supported. They make us feel loved. May we always speak this way to one another.
In gratitude,
Lisa
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Disclaimer: I am a Black woman living with central centrifugal cicatricial alopecia who shares thoughts, stories and ideas with other Black women navigating this condition for informational purposes only. I’m not a doctor or licensed or certified professional, therefore nothing in my posts – explicit, implicit, by implication, or in reference – is intended to constitute, or be a substitute or replacement for, licensed, professional, medical care. Always seek the advice of your dermatologist or other qualified medical provider with any questions you have regarding your health, CCCA, and treatments for CCCA, be they medical or otherwise, and before making any decisions about your health care. Never disregard professional medical advice or delay in seeking it because of something you have read in my posts.